Respecting Choices - ACP Facilitator Manual
Respecting Choices - ACP Facilitator Manual
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Res eating C OiC S GUNDERSEN HEALTH SYSTEM ACP FA LITATOR NUAL This manual is copyright protected for use with the Respecting Choices Advance Care Planning Facilitator online courses Revised and rewritten by Bernard J Hammes PhD and Linda Briggs MS MA RN 19942007 Gundersen Lutheran Medical Foundation Inc All rights reserved Res eating C oicesi GUNDERSEN HEALTH SYSTEM i u r Facilitator39s Manual Third Edition Published by Respecting Choices Gundersen Lutheran Medical Foundation Inc 1900 South Avenue ALEX La Crosse WI 54601 6087754887 Email respectingchoices gundluthorg Website wwwrespectingchoicesorg The term certification as used in Respecting Choices educational programs and products means that Gundersen Health System issues a certificate upon fulfillment of the following elements 1 completion of a specified Respecting Choices educational program with standardized content and processes 2 successful demonstration of skills associated with the specified program and 3 if applicable an 80 percent or higher score on a written examination associated with the specified program The Respecting Choices certification programs are not credentialed by a national accreditation body About Gundersen Lutheran Gundersen Lutheran is a comprehensive healthcare network including one of the nation s largest multispecialty group medical practices providing services through regional community clinics hospitals nursing homes home care behavioral health services vision centers pharmacies and air and ground ambulances Gundersen Lutheran employs more than 500 medical dental and associate staff and nearly 5000 support personnel Headquartered in La Crosse Wisconsin Gundersen Lutheran serves 19 counties in western Wisconsin northeastern Iowa and southeastern Minnesota and has been named one of the top 100 health organizations ten times in the last 10 years The main campus of Gundersen Lutheran serves as a tertiary referral center and is designated as the Western Clinical Campus for the University of WisconsinMadison Medical School and School of Nursing 2007 Gundersen Lutheran Medical Foundation Inc Contents Faciitator s Manual Chapter 1 Appendix Chapter 2 Chapter 3 Appendix I Appendix II Appendix III Appendix IV Biographies v Preface vi Acknowledgement for the Third Edition vii Historical Background viii The Respecting Choices Approach to Advance Care Planning and Advance Directives 11 Part I Introduction to Respecting Choices Overview and Background 11 Improving EndofLife Care 14 A Short History of Advance Directives 14 Overview of Law and Ethics Related to Advance Care Planning 16 Part II Advance Care Planning and Advance Directives Understanding the Language and Concepts 111 Advance Care Planning The Process 111 Advance Directives The Plan 117 Exercises 120 Advance Care Planning and the Law Common Misunderstandings 121 Further Reading 123 Facilitating Basic Advance Care Planning Discussions 21 Advance Care Planning Why Is This a Difficult Discussion 21 Basic Advance Care Planning for Any Adult Why Is It Important 22 Determining DecisionMaking Capacity 23 Interview Skills for Advance Care Planning 26 Importance of Healthcare Agency Strengthening the Process 210 Cultural and Religious Spiritual Perspectives on Advance Care Planning 213 Frequently Asked Questions about Facilitating Advance Care Planning Discussions 222 Exercises 225 Further Reading 226 Creating an Advance Directive Communicating the Plan 31 Creating an Advance Directive Options for Communicating Choices for Future Medical Care 31 Competencies for Assisting with Completion of an Advance Directive 34 Tools for Promoting and Assisting with Advance Care Planning The Respecting Choices Example 36 Exercises 311 State Statute Information Regarding Advance Directives Template 312 State Statute Information Regarding Advance Directives Wisconsin 315 State Rulings Regarding EndofLife Decisions Wisconsin 318 The La Crosse Power of Attorney for Healthcare Document 319 Further Reading 3 21 continued 2007 Gundersen Lutheran Medical Foundation Inc iii Contents Faciitator s Manual Chapter 4 Facilitating Advance Care Planning Discussions with Adults with Chronic Progressive Illness 41 Advance Care Planning Interview Skills for Adults with Chronic Progressive Illness 42 Helping Patients Understand the Benefits and Burdens of LifeSustaining Treatment 44 Exercises 417 Further Reading 418 Chapter 5 Advance Care Planning Skills with Adults Likely to Die in the Next 12 Months or Adults Living in Longterm Care 51 Interview Skills 5 1 The Living Well Interview Questions 53 Developing a Written Communication Plan 54 Exercises 5 8 Appendix I The Physician Orders for LifeSustaining Treatment POLST Form The La Crosse Vision 59 Appendix II Guidelines for Implementing the Physician Orders for LifeSustaining Treatment Document La Crosse Template 511 Further Reading 515 Chapter 6 Making Advance Care Planning Work Organizational Issues and Educational Strategies 61 Developing Community and Organizational Systems and Practices 61 Patient and Community Education and Engagement 612 Continuous Quality Improvement Measuring the Effectiveness of an Advance Care Planning Program 615 Exercises 620 Appendix I Gundersen Lutheran Policy on Advance Care Planning and Advance Directives 621 Appendix II Advance Care Planning Request Intake Form 629 Appendix III Sample Script and Flow Chart for Advance Care Planning Admission Assessment by Registered Nurses 630 Further Reading 634 Respecting Choices An Epilogue Advance Care Planning Strategies for Other Populations E1 Further Reading E6 iv 2007 Gundersen Lutheran Medical Foundation Inc Biographies Bernard Bud Hammes PhD Ethics Consultant and Director of Medical Humanities Gundersen Lutheran Medical Center La Crosse Wisconsin Dr Hammes came to the clinical setting with a doctorate in philosophy from the University of Notre Dame in 1984 Since that time he has been providing ethics education and consultation to medical staff house staff medical students nurses social workers chaplains and other health professionals His work has focused primarily on improving endoflife care at Gundersen Lutheran and in the La Crosse community He is the chair of both the institutional ethics committee and the institutional review board He has led the development of two successful awardwinning advance care planning programs If I Only Knew and Respecting Choices He has published 33 articles and book chapters about endoflife issues Linda Briggs MS MA RN Associate Director of Advance Care Planning amp Ethics Consultant Gundersen Lutheran Medical Center La Crosse Wisconsin With 25 years of nursing experience as a critical care staff nurse nurse manager clinical nurse specialist and educator Linda Briggs brings extensive insight to clinical and educational perspectives related to healthcare ethics After receiving a master of science degree in bioethics from the Medical College of Wisconsin in Milwaukee in 1999 she joined the Gundersen Lutheran team of professionals dedicated to developing effective programs in improving endoflife care Her master s thesis has been published by Gundersen Lutheran Medical Foundation and is entitled A Competency Based Educational Curriculum for Ethics Committee Members She provides education and consultation to individuals and organizations invested in implementing the nationally recognized advance care planning program Respecting Choices 2007 Gundersen Lutheran Medical Foundation Inc v Preface The Third Edition of the Respecting Choices Facilitator Manual continues the re nement and development of the Respecting Choices comprehensive approach to developing an effective advance care planning ACP program There are several changes to this manual First we have rearranged and condensed the content into six chapters to coincide with the Respecting Choices ACP Online Facilitator Course a series of six interactive educational modules Individuals who complete both the online course and the classroom ACP certification course will appreciate the consistency in this reorganization Second we have rearranged the content to ow from basic planning for any adult and the completion of a written document to more advanced planning for adults with chronic progressive illness and for those living in long term care facilities We have refined the ACP interview skills to assist the novice to learn basic facilitation as well as the more experienced practitioner to improve their communication skills with adults who are ill and in need of making endoflife decisions Third we have added new content For the first time we explain the unique conceptual and theoretical underpinnings that have guided our approach to ACP from the very beginning We have added an epilogue that describes how the facilitation skills are modified to address the planning needs of unique populations eg pediatric patients with progressive fatal illnesses and provides an overview of a newly developed advance care planning approach to patients with endstage illness Last all references at the end of each chapter have been updated This new edition represents both the ongoing commitment of the Respecting Choices faculty to constantly improve our materials and re ects our dedication to meet the training needs of our many partners The Respecting Choices materials and training are now used in over 55 groups in the United States which range from statewide implementation to small communities and from large integrated health systems to rural hospitals A Respecting Choices program is now used in a growing national movement in Australia and is being used or has in uenced development of programs in two large health authorities in Canada We invite you to visit our Website at wwwrespectingchoicesorg to learn more about our current work activities and ongoing research If you have any thoughts or questions you would like to share please contact us Sincerely Bud Hamme Ph Linda Briggs MS MA RN Director Associate Director 2007 Gundersen Lutheran Medical Foundation Inc Acknowledgment for the Third Edition The Third Edition of the Respecting Choices Facilitator Manual represents signi cant growth and development of the Respecting Choices national and international program This growth and development has had strong support from Rana Limbo PhD APRN BC Director of Bereavement and Advance Care Planning Services at Gundersen Lutheran Medical Foundation and from George Kerckhove Board member of the Gundersen Lutheran Medical Foundation Without the dedicated efforts of these two people this edition would not have been possible We also want to thank Mark V Connelly MD Chairman of the Board of Gundersen Lutheran Medical Foundation and the Foundation s Board for their ongoing support and confidence in the Respecting Choices national program Acknowledgement also needs to be given to the numerous staff and administrators at Gundersen Lutheran Health System who have remained committed to the process and improvement of advance care planning as part of great patient care We also need to recognize the editorial help of Cathy Mikkelson Fischer and the production support of the Gundersen Lutheran Marketing Department Finally we would like to recognize the significant contributions of Elaine Colvin now retired to the Respecting Choices program over many years 2007 Gundersen Lutheran Medical Foundation Inc vii Historical Background Editor s Note What follows was the Foreword to the Second Edition of the Respecting Choices F acilitator s Manual We include it here because it illustrates the collaborative communitywide nature of Respecting Choices beginnings and acknowledges the contributions of the many individuals who working together made the program possible This facilitator s manual is one part of a larger advance care planning program This manual will assist you in gaining the knowledge and skills necessary to help other adults with advance care planning as well as gain an understanding of how this knowledge and skill fits within an overall organizationalcommunitybased program This foreword is meant to provide a historical perspective of the program in La Crosse so that you will have a context for creating programs in other communities This advance care planning program was first created in La Crosse Wisconsin In January 1991 the presidents of the four central healthcare organizations in La Crosse appointed a task force and charged it with developing a program that would result in 50 of the adult population having made advance care plans prior to facing endoflife decisions We acknowledge the following individuals whose vision and support made this program possible Jack Schwem Lutheran Health System Kermit Newcomer MD Gundersen Clinic Ltd Brian C Campion MD Franciscan Health System and William J O Leary MD Skemp Clinic The appointed task force started its work early in 1991 under the name The La Crosse Area Medical Centers Task Force on Advance Directives By 1993 the Task Force and support staff had developed and implemented a unique and sophisticated set of policies standards materials and curriculum called Respecting Your ChoicesTM Recognition and thanks is extended to members of the Task Force as well as to those providing staff support Task force members included Bernard Hammes PhD chair Joe Kruse MHA Dan Felten MSW Jackie Lee RN BSN Julie Bartels RN BSN Randi Friedl RN BA Debra Flock Elaine Colvin MEPD BSN RN and Jim Breitengross BSW Important staff support members included Reverend Carol Garman Nickijo L Hager MSN BSN RN Mama Holley Gale Kreibech BSN RN CHES Michael Milligan and Joan Mueller MA The local La Crosse program continues today under the joint leadership of Nickijo L Hager and Bernard Hammes The newly organized founding organizations Franciscan Skemp Healthcare and Gundersen Lutheran continue to strongly support this collaborative communitybased advance care planning program As is noted above the original program name was Respecting Your ChoicesTM In 1999 Gundersen Lutheran expressed a desire to make the program available nationally At that viii 2007 Gundersen Lutheran Medical Foundation Inc time Franciscan Skemp Healthcare decided that this goal was beyond the scope of their communitybased mission and gave Gundersen Lutheran permission to take responsibility for moving the program into a larger audience Subsequently the name of the national program was changed to Respecting Ch0ices This new name emphasizes both the original roots of the program and the importance of understanding and upholding an individual s advance care plan In addition it recognizes the importance of acknowledging the values of healthcare professionals and of organizations involved in providing care It is Within this matrix of relationships that advance care planning takes place and respecting choices needs to occur The image of the starfish on the seashore has been with the program since its inception There are often questions about the image Why was it used What is the significance The image was chosen because it was appealing had a timeless quality and communicated a sense of quiet personal re ection In addition it reminds us that each individual is unique and that We can one by one make a difference in all that We do It was hoped that this visual would help promote advance care planning Persons who complete this training are called facilitators because this term best captures the multiple roles that these individuals undertake Synonyms for to facilitate include to 99 CC 99 CC to expedite to assist and to advance All of these terms describe roles that advance care planning facilitators may need to fulfill promote As have the hundreds of people who have already participated in the original Respecting Your Ch0icesTM program We hope you too Will find the Facilitator s Manual and training stimulating and useful We also hope that you will find ways to use this course and the larger Respecting Ch0ices program to improve care for patients and their families Nickijo L Hager MSN BSN RN Bernard Bud Hammes PhD Vice President Mission and OD Director Medical Humanities Franciscan Skemp Healthcare Gundersen Lutheran Cochairs La Crosse Area Medical Centers Task Force on Advance Directives 2007 Gundersen Lutheran Medical Foundation Inc ix 2007 Gundersen Lutheran Medical Foundation Inc Chapter 1 The Respecting Choices Approach to Advance Care Planning and Advance Directives Respecting Ch0ices V 2 quot4 3 H 1 Chapter 1 The Respecting Choices Approach to Advance Care Planning and Advance Directives Part 1 Introduction to Respecting Choices Overview and Background Advance care planning ACP is heralded as a critical component in promoting respect for selfdetermination and in improving endoflife care However there are multiple barriers to designing an effective ACP approach that produces successful outcomes To promote ACP many programs have focused their attention on a narrow set of outcomes such as the completion of advance directive documents the design of a userfriendly document the education of consumers on the terminology and rationale for completing written documents or the development of an improved storage and retrieval system To be successful ACP must be viewed as a comprehensive system that defines clear expectations develops strategies to address multiple outcomes and requires monitoring for ongoing improvement Respecting Choices is a comprehensive ACP program that advocates four key elements training of health professionals and others to skillfully facilitate ACP discussions developing community and organizational systems and practices to incorporate ACP into the routine of care designing effective patient and community ACP engagement materials and monitoring outcomes with continuous quality improvement methods A description of the importance of each of these elements in achieving successful and sustainable ACP outcomes follows 1 ACP facilitation skills development Effective ACP involves much more than assisting an individual in completing an advance directive document It is a staged ongoing process of assisting individuals in understanding their medical condition and potential future complications understanding the options for future medical care as it relates to their medical condition discussing choices with family loved ones and providers and re ecting upon these choices in light of personal goals values and beliefs to include religious and cultural perspectives Effective ACP emphasizes the personal relationships embedded in making difficult choices for future medical care Embracing this definition of ACP acknowledges that it is an ongoing process that requires the commitment of multiple professionals who develop skills in uncovering the patient s perspective and facilitating shared decision making among patient family provider and other loved ones The phrase endoflife in this program is used in a broad context It is meant to include all decision making in the last days months or even years of an indiVidual s life 2007 Gundersen Lutheran Medical Foundation Inc Chapter 11 Having discussions about future healthcare decisions including endoflife care can be uncomfortable for health professionals and individuals for many reasons a Asking someone to talk about core values and beliefs is very personal b Discussions can produce strong emotional responses touching on deep feelings and fears We may Want to avoid c We may be unsure how to start or finish such a conversation and do not Want to appear lacking in appropriate skills d The conversation is complex and timeconsuming Without a clear endpoint With education and a Willingness to gain knowledge and skills expertise in initiating discussions about future healthcare decisions and assisting in the development of individualized advance care plans can be attained 2 Consumerpatient engagement Community and patient engagement involves developing a plan to expose individuals to consistent reliable and repetitive messages about the importance of the process of ACP for all adults Ideally exposure occurs through normal daily interactions with religious organizations ethnic and cultural communities advocacy groups and organizations that provide healthcare services 3 Systems to Honor Choices Respecting Choices advocates systemwide changes throughout the community and related healthcare organizations In order for an individual s preferences to be honored at the end of life systems must be built that ensure the storage and retrieval of plans the transfer of plans throughout the healthcare continuum the availability of skilled facilitators Working in concert With other health professionals the transfer of preferences into medical orders and the education of all staff about basic ACP concepts 4 Continuous Quality Improvement Effective systems needs ongoing monitoring and revision The Respecting Choices approach defines quality ACP outcomes offers data collection suggestions and explains how to use data to create momentum for change As a participant in this program you will learn about each of these important elements and We invite you to personally engage in the meaning of this Work Critical to your success as an ACP facilitator is your ability to Work through your personal goals values and beliefs To effectively help others you must become knowledgeable about the range of healthcare choices including endoflife decisions and be at peace with these issues in your own life Chapter 12 2007 Gundersen Lutheran Medical Foundation Inc Why Planning for Decisions at the End Of Life is Important The facts about how We die are clear Field amp Cassel 1997 1 Most of us will die after experiencing a chronic progressive and ultimately fatal illness 2 Approximately 80 of deaths will occur under the care of health professionals in some type of health organization 3 When the time comes to make important endoflife decisions approximately 50 of people are incapable of participating in those decisions 4 When health professionals are uncertain about What decisions to make the default is to treat 5 If health professionals or loved ones have not spoken with a patient about endoflife issues they cannot reliably predict What the patient would have chosen and they find the decision making responsibility burdensome and stressful These facts highlight the importance of taking the initiative to discuss and plan for future treatment choices The past decade has seen some critical although not always successful strategies to provide opportunities for advance care planning What Do Adults Fear What Are They Willing To Do The prevalence of completing advance directives in the general population remains at 25 to 30 but adults continue to be concerned about future healthcare decisions for a variety of reasons Many fear that technology will keep them alive in a state they would not find acceptable or that their families might get embroiled in a difficult prolonged battle with each other or with health professionals over medical decisions Adults fear that their Written plans will not be honored or are unsure who to contact for assistance Despite these fears and the low incidence of completion of documents there is a growing interest for individuals to participate in advance care planning and protect their loved ones from the burden of decision making Evidence suggests that many adults have not taken the time to complete a Written advance directive although a majority have had some discussions with persons close to them about situations in which they would or would not Want medical treatment It is this great inclination to talk about our fears regarding endoflife issues that We need tap into We need to help adults move from a simple comment like Don t keep me alive like that young Woman to a more complete and helpful planning process The focus needs to be more on the conversation about future medical care rather than the right to complete a legal document The focus of community and patient engagement needs to be on how to have discussions 2007 Gundersen Lutheran Medical Foundation Inc Chapter 13 with those close to you How do you start the conversation What do you talk about When have you completed the conversation Most individuals think that their health professional should be the one to begin the conversation Most desire help in having these conversations with their families or other loved ones Improving EndOfLife Care A disconcerting body of evidence on the experience of dying patients and their families continues to emerge As life expectancy increases so has the pain and suffering associated with the dying process Many people have unwanted physical symptoms related to either the underlying medical condition or treatment consequences Many will suffer pain nausea constipation breathlessness loss of function and loss of independence Psychologically many will be anxious depressed afraid sad and alone Additionally many are cared for by professionals who lack the knowledge to optimally treat symptoms of the dying the time to assess needs and the communication skills or confidence to address innermost fears Initiatives to change this reality and systematically address all aspects of endoflife care are evolving Healthcare leaders and scholars are challenging private professional and political organizations to develop creative strategies to improve care of the dying In summary recommendations include the following 1 Improving endoflife care must be a national priority 2 Endoflife outcomes must be developed and studied in order for continued improvement to be measured 3 The process of advance care planning should begin well before a healthcare crisis One of the central themes of these recommendations is the need to shift the focus of attention from the completion of the advance directive document to the process of advance care planning With improvements in the approach skills and systems related to endoflife discussions with patients and their families the quality and effectiveness of the advance directive as a tool for communication will improve These changes will ideally result in the overall intended outcome of improving the experience of dying patients and their families A Short History of Advance Directives The advance directive document as a tool for communicating preferences for future healthcare decision making has been advocated for more than three decades to provide individuals a mechanism with which their choices can be respected should they become unable to make their own decisions Currently all 50 states have statutory documents and other countries have advocated or regulated the right of all adults to record their healthcare preferences in writing The US federal government passed the Patient SelfDetermination Chapter 14 2007 Gundersen Lutheran Medical Foundation Inc Act PSDA in 1991 requiring all health institutions to inquire upon admission whether a patient has an advance directive The PSDA also requires health institutions to provide information about a patient s right to have an advance directive and to educate and inform staff and patients about advance directives There was hope that these simple requirements would increase the prevalence of advance directives and reduce the con ict over endoflife decision making Unfortunately neither the PSDA nor the use of the statutory advance directive as a communication tool has produced the intended results Research has demonstrated the following Miles 1996 Teno 1997 Meisel 2000 Convinsky 2000 Lynn 2000 Fagerlin 2004 1 The prevalence of written advance directives while improving especially among certain populations such as patients with cancer and AIDS remains low Patients and families remain confused over terminology documents and processes of advance care planning 2 Clinicians remain uncomfortable talking to patients about these issues thus creating inadequate processes for patients and families to learn about endoflife options 3 Advance directives often disappear are unknown to physicians cannot be produced by patients or healthcare facilities and are not available during transfer of the patients Organizational structures and processes are major determinants of these inadequacies 4 Statutory advance directives are often too vague or poorly understood There is little evidence the information in these advance directives affects treatment decisions 5 If a healthcare agent is chosen often this person has not had meaningful conversations with the patient and does not know what the patient would have wanted 6 Information regarding advance directives is often provided only during the stressful times of admission to a hospital or a longterm care facility 7 Socioeconomic and cultural differences pose barriers to completion and use of advance directives Those most likely to have an advance directive are white elderly educated and tend to plan for the future Ironically not only has the advance directive as a mechanism for improving endoflife care failed dying patients and their families have revealed continued dissatisfaction with the experience of dying Given these disappointing results regarding the effectiveness of advance directives it is not surprising that there is skepticism on their continued usefulness However evidence exists that when health professionals establish a comprehensive system of advance care planning effective outcomes can be achieved Attention has turned toward the creation and testing of improved systems of advance care planning 2007 Gundersen Lutheran Medical Foundation Inc Chapter 15 Overview of Law and Ethics Related to Advance Care Planning Advance care planning has strong ethical and legal roots that are often poorly understood or misinterpreted As a facilitator of this process you may need to clarify terms and misunderstandings provide information on your state or local requirements and validate that decisions made can be supported by legal and ethical principles Advance Care Planning and the Law The rights of a competent adult to refuse medical care are well established in common law state statutes federal regulations and standards and court decisions A brief review is provided 1 The Karen Quinlan Case in 1976 captured the attention of the public and raised awareness of the right to privacy and the appointment of surrogates as endoflife decision makers The court also introduced the concept of an ethics committee to review such cases and assist with determination of prognosis 2 California was the first state to proactively pass a law the Natural Death Act of 1976 establishing the rights of patients and their surrogates to forgo lifesustaining treatments through the development of a written directive While there were many restrictions and limitations to the execution of such a document it paved the way for future advances and improvements 3 In the Saikewicz case of 1977 a Massachusetts court extended the rights of self determination to those individuals who were never decisional basing surrogate decision making on the best interests of the patient 4 In 1983 The President s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research published a document entitled Deciding to Forgo LifeSustaining Treatment that summarized the emerging consensus in the United States on these issues It not only emphasized the obligation to respect the rights of individuals who have expressed wishes for endoflife care but also offered the notion of a durable power of attorney as a substitute decision maker should an individual become incapable 5 Legal rulings in the 1980s applied the right to forgo treatment to more routine treatments such as cardiopulmonary resuscitation CPR medications and artificial nutrition and hydration basing these decisions on the analysis of benefits and burdens to the individual 6 Continuing to support an individual s right to refuse treatment even if incapacitated the 1990 United States Supreme Court Cruzan decision held that the most a state can require is clear and convincing evidence that a patient would not want medical care Individual Chapter 16 2007 Gundersen Lutheran Medical Foundation Inc states may use a less restrictive standard It does not require that this evidence be based on Written documents and this ruling pertains to adults Who had decisionmaking capacity at one time 7 An outcome of the Cruzan case was the Patient SelfDetermination Act PSDA of 1991 This federal statute and regulation requires all health institutions hospitals longterm care facilities hospices and home health agencies to a ask adults at admission if they have a written advance directive and document their responses b provide Written information to adults about their right to refuse medical and surgical treatment under the statutes of the state and the policies and standards of that institution c inform adult patients of their right to file a complaint concerning a provider s noncompliance with advance directive requirements Patients must be given a telephone number Where their complaints may be filed with the state d maintain policies about patients rights to refuse treatments and to have advance directives e provide education about advance directives to their staff and community f inform patients about changes in state laws conceming advance directives Within 90 days of the law going into effect 8 Currently all 50 states have statutory documents e g the living Will andor the Power of Attorney for Healthcare that are recognized as legal tools for documenting patients preferences 9 In 2005 the Terri Schiavo case came to national attention and to final resolution This case involved a young woman Who had suffered a significant brain injury following a cardiac arrest Ms Schiavo s husband after 5 years of seeking all forms of medical care and rehabilitation came to realize and accept that his wife was in a persistent vegetative state PVS and would not recover As his Wife s legal guardian he requested that her feeding tube be Withheld as he believed that there was clear evidence that this is What Ms Schiavo would Want Ms Schiavo s parents challenged the medical findings the integrity of the husband legal guardian and the fact that their daughter would Want the feeding tube Withheld After years of court hearings on all these matters the courts upheld the findings that Terri Schiavo was in PVS that her husband was acting in her interest and that there was evidence that she would not Want a feeding tube used to sustain her life in her existing condition This ruling objectionable to some religious groups and to Ms Schiavo s parents continued the 30 years of precedent of the US 2007 Gundersen Lutheran Medical Foundation Inc Chapter 17 courts to allow medical treatment to be forgone when there was adequate evidence that the patient would not Want that treatment in the existing medical condition In addition to these legal underpinnings several professional organizations e g the American Medical Association AMA and the American Nurses Association ANA have established advance care planning as an integral component of standard professional practice Regulatory agencies such as The Joint have mandated standards on protecting patients rights to make their own decisions Health professionals may have legal misunderstandings and myths and may therefore need assistance clarifying the law as Well as the related ethical principles Common legal misunderstandings are summarized in the appendix at the end of this chapter The Ethics of Advance Care Planning There are many Ways to explain the ethical roots of advance care planning One of the most important foundations is the doctrine of informed consent Adult patients with decision making capacity have a right to consent to or to refuse medical and surgical treatment recommended to them by a physician The values underlying informed consent include promoting people s wellbeing and respecting their right to selfdetermination In promoting Wellbeing more is being cared for than a biological organism Medical and nursing care must take into account the goals values and beliefs of the individual who is ill These variables can alter judgment about Whether a treatment is of benefit to a patient and since a health professional s duty is to do What is good for the individual knowing the patient s goals values and beliefs is an essential part of good care In respecting individuals rights to selfdetermination more is involved than simply understanding goals values and beliefs These goals values and beliefs need to be translated into individualized and informed decisions The elements of informed consent include understanding the interventions their risks benefits and goals understanding the alternatives their risks benefits and goals and understanding the right to refuse In order for patients to participate in this understanding they must have decisionmaking capacity If these types of discussions occur late in a patient s illness trajectory their chances of participative decision making decreases In the spirit of true informed consent advance care planning discussions can create an environment of shared decision making between the patient family and health professional If initiated early While patients are capable these conversations can provide needed information as Well as the time and resources to assist patients in understanding and interpreting information in the context of their goals values and beliefs In this Way respect for individual Wellbeing and the right to selfdetermination can be ensured Chapter 18 2007 Gundersen Lutheran Medical Foundation Inc While a patient s right to refuse treatment and the right to make informed decisions clearly provide justification for advance care planning there are additional ethical roots From an experiential perspective advance care planning is consistent with an ethic of care and of caring relationships Making decisions for loved ones who are too ill to speak for themselves and unlikely to recover may include the difficult decision of forgoing lifesustaining treatment Rather than relying on rights to selfdetermination and refusal of care a well prepared healthcare agent can be guided in this decisionmaking process by previous discussions and by the caring relationship that exists between loved ones The La Crosse Experience The La Crosse Respecting Choices program presents a variety of strategies to address the multiple components of an effective advance care planning system We have designed training materials and courses to develop skills in the process of advance care planning and not solely on the completion of a document These skills include initiating discussions and helping individuals identify their goals values and beliefs regarding their healthcare Respecting Choices also had developed approaches to designing organizational systems that are effective in implementing an individual s plan of care We have learned how to design and implement effective patient and community engagement strategies Finally we have developed methods and tools for monitoring this system to determine whether important outcomes are being achieved and how to make improvements when they are not This program has demonstrated success Initiated in 1991 the major provider organizations in La Crosse Wisconsin now Franciscan Skemp Healthcare and Gundersen Lutheran Health System cooperated in a joint effort to improve advance care planning The results of this effort were studied during an 11month period in 1995 and 1996 and include the following 1 Among the 540 decedents eligible for the study more than eight of 10 had written advance directives found in the medical record 2 In 98 of the cases patient written preferences were consistent with the decisions made at the end of life 3 Of those who had written advance directives 77 completed a power of attorney for healthcare Of these documents 83 contained written preferences for or against specific medical treatments 4 More than half 271 of 459 of all written documents contained a specific request not to attempt CPR at some point In 90 of these instructions there was a request to never attempt CPR 5 Those who had written advance directives were significantly less likely to die in a hospital and more likely to be admitted to hospice care than those who did not have an advance directive 2007 Gundersen Lutheran Medical Foundation Inc Chapter 19 The strategies implemented and lessons learned from this endeavor will be shared throughout this program in order to stimulate discussion and elicit thought proVoking questions Chapter 110 2007 Gundersen Lutheran Medical Foundation Inc Part II Advance Care Planning and Advance Directives Understanding the Language and Concepts Advance Care Planning The Process Advance care planning is an organized process of communication to help an individual understand re ect upon and discuss goals values and beliefs for future healthcare decisions When this process is done well it has the power to produce a written plan ie advance directive that accurately represents individuals preferences and thoroughly prepares others to make healthcare decisions consistent with these preferences When this process is not done well it produces written plans that are ambiguous and loved ones who are unprepared to make substituted decisions It is the goal of this facilitator manual to describe the skills and strategies in facilitating quality advance care planning discussions We begin by providing a general overview of the three components of an effective and rewarding advance care planning process 1 Understanding What do people need to understand in order to participate in the planning process First they need to understand why advance care planning is important for any adult the components of the planning process the benefits of planning and the consequences of not planning Practices that focus solely on informing people that they have a legal right to plan without engaging them in the benefits of planning and addressing their fears or misunderstandings about such planning are often ineffective Second they need to understand what they are planning for This step involves individualizing the discussion to the individual s state of health A healthy adult for example does not need to plan for the same decisions as a patient with endstage heart failure This will require people to understand their health condition and identify if there is a need for more information Third they need to understand the range of choices for future decisions based on their health condition and to receive information on the benefits and burdens of these choices Fourth they need to understand the dynamic nature of advance care planning that health status and personal goals and values may change over time and that preferences frequently need to be revisited Last they must be helped to appreciate that advance care planning is an opportunity to learn how to communicate with loved ones and healthcare providers 2 Reflection The next component of the advance care planning process involves the opportunity to re ect upon personal goals values and beliefs As you will learn later in this manual effective techniques to assist people in identifying goals values and beliefs include encouraging them to tell their story exploring experiences with loved ones who have been seriously ill and 2007 Gundersen Lutheran Medical Foundation Inc Chapter 111 what was learned through these experiences expressing fears and concerns and describing what living well means Allowing people to re ect upon such important questions and to verbalize goals values and beliefs provides them with a framework for weighing the benefits and burdens of future healthcare decisions It also helps their loved ones to become more informed and provides guidance for making substituted decisions in the future if needed 3 Discussion Discussion encourages people to communicate with their chosen healthcare agents other loved ones healthcare providers and religious or spiritual advisors among others An effective advance care planning process identifies communication channels that need to be opened and offers suggestions for how to initiate discussion with others Patients may need assistance formulating questions for their physician regarding a health condition or treatment decision such as CPR Individuals also may need referral to a palliative care specialist regarding pain and symptom management or to a religious advisor regarding the teachings of their tradition Ideally this advance care planning process leads to the development of a written plan an advance directive that accurately represents the goals values beliefs and preferences uncovered through the advance care planning discussions In summary advance care planning is done well when an individual is motivated to learn more and actively participate in planning future options are understood options are considered in light of the persons goals values and beliefs choices are discussed a plan is formulated and supported healthcare agents and loved ones accept that following the plan is a loving act a healthcare agent is selected and the agent s authority to make decisions is clarified guidelines are provided on when medical treatment should be continued or forgone 9 quot 39gt t guidelines are provided on what it would mean to live well when the time for living may be short Conceptual Framework Underpinnings of the Respecting Choices Advance Care Planning Process The three components understanding re ection and discussion of the advance care planning process an the ACP facilitation skills have evolved from a clear conceptual framework This framework was woven from a set of four interrelated theoretical underpinnings Chapter 112 2007 Gundersen Lutheran Medical Foundation Inc 1 The Doctrine of Informed Consent Planning and decision making more generally can be effective only when barriers to understanding discussion and re ection are first identified and addressed Considering advance care planning as a type of informed consent for medical care Litz 1988 it follows that removing barriers that interfere with good decisions is an essential first step Cassell 1978 For example if a person were in severe pain a health professional would want to relieve the pain ie remove the barrier before asking the patient to make important healthcare decisions Similarly beliefs emotions gaps in knowledge and prior experiences may impair one s ability to effectively participate in advance care planning Unless these gaps in knowledge fears or misunderstandings are identified and addressed individuals are unable to make truly informed healthcare decisions In this respect advance care planning is not simply a matter of giving a person what they need to know transfer of information from an expert to another person but a process of exploration that can be achieved only by listening to the individual s unique set of beliefs and circumstances Delbanco 1992 If this exploration is not done individuals in the process may not fully understand Hammes 1978 Cassell 1985 Engelhart 1986 and gaps in knowledge fears misunderstandings or other barriers may not be identified and addressed Quill 1989 Lazare 1987 Failure to do this exploratory work will result in uninformed planning and misunderstanding 2 The Adult Learning Principle of Engagement Planning can be effective only if it actively engages a person in the planning process Engagement is one of the foundational principles of adult learning Redman 1992 The Respecting Choices advance care planning approach attempts to engage individuals in several ways identifying what information a person needs to know determining what is already known affirming what is known or learned and explaining what s in it for the person e g what are the consequences of planning or not planning The intended outcomes of these engagement activities go well beyond the straightforward act of providing information Effective personal engagement results in motivating individuals to take action e g to talk to their loved ones to understand their health condition to re ect on goals values and beliefs and to make specific decisions These engagement activities will ultimately result in changing a person s willingness to participate in advance care planning and in creating a more effective written plan This theoretical underpinning has strong connections to the more modern concepts of motivational interviewing and transtheoretical change Miller amp Rollnick 2002 2007 Gundersen Lutheran Medical Foundation Inc Chapter 113 3 The Narrative Approach Planning begins by listening and exploring the individual s story The narrative approach is well supported in the literature as a valuable strategy to gain insight into one s own worldview Dunne 1965 1967 1973 Respecting Choices advocates the use of narrative to gain insight into individuals goals values and beliefs These insights can have a powerful positive impact on the understanding needed to make future health decisions and on the motivation to plan Narratives are also more useful to help individual s to gain new insights by hearing and exploring not only their own stories but also by exploring archetypical and cultural stories This theoretical underpinning of Respecting Choices holds that the use of narrative to improve understanding re ection and discussion is crucial because it can help integratelearning motivation and action The use of narrative is a driving force in the process that connects the theoretical ideas described in items 1 and 2 above 4 An Ethic of Caring Relationships Planning is more accurately supported by an ethic of care Gilligan 1982 rather than an ethic of rights While advance directives have most often been seen as a way for individuals to exercise the right of selfdetermination and the right to refuse medical care the Respecting Choices approach postulates that in daily human experience most people are primarily concerned about the ethical boundaries of their relationships and roles Taylor 1985 Pelligrino 1988 For a daughter of a seriously ill mother the primary question is not What are my mother s rights but rather What does a good daughter do to care for her mother at this moment or How do I love my mother now This final theoretical underpinning of Respecting Choices holds that if the ethics of caring relationships can be explored and addressed in the planning process it will be critical to the process of understanding re ection and discussion and will in turn be extremely useful to loved ones when healthcare decisions need to be made at some future point This theory has specific meaning and connection when identifying the approach to advance care planning for diverse populations It complements the use of narrative as described above as stories are commonly about dilemmas in how we care or fail to care for those closest to us The interaction among these four theoretical underpinnings forms the conceptual framework upon which Respecting Choices has developed the components of the advance care planning process and the related facilitation skills This work gains increased credibility and utility as it is continually tested in clinical practice Chapter 114 2007 Gundersen Lutheran Medical Foundation Inc Advance Care Planning in Clinical Practice In contrast to the consequences of completing a typical advance directive document Without discussion the process of advance care planning has positive effects These types of discussions have demonstrated the following patient outcomes Steinhauser 2001 2002 Tierney 2001 Tilden 2004 1 2 improvement in physical symptoms of depression increase in patients beliefs that physicians understand their preferences increase in patients beliefs that physicians care more better preparation for death lessening of the burden on loved ones ie decrease in family stress associated with the decision to Withdraw treatment Inherent in achieving these positive outcomes from advance care planning is the quality and commitment to the conversation and to a system of using and honoring the plans that they create There are several reasons to actively initiate and engage in this dynamic process 1 2007 Gundersen Lutheran Medical Foundation Inc Professionals have an ethical and legal responsibility to honor a people s decisions even if they become unable to speak for themselves Individuals have an opportunity to better understand their overall healthcare status and armed with helpful information are better prepared to begin to make those difficult end oflife decisions The focus can be shifted from a medical crisis in which shortterm goals for each potential medical condition are decided to a more holistic approach of anticipating prognosis considering all of a patient s multiple problems and What longterm goals the patient has envisioned or needs to begin to imagine An emerging objective of advance care planning therefore is to not only guide decision making for lifesustaining treatment if a person becomes incapable but to anticipate potential complications and discuss related goals and preferences A unique opportunity is opened for health professionals individuals and their families to establish common communication pathways that will assist in the identification of individual goals and values for quality of life decrease anxiety and fear and build trust and a sense of true partnership Chapter 115 While the legal or regulatory support for creating written advance directives is often considered important these documents when created without good advance care planning most often fail Seeking healthcare for a loved one who has become ill or injured is most often considered an act of love In contrast when a family member is asked in a hopeless situation if treatment should be stopped it is often emotionally and morally difficult to make decisions To the family member treatment may represent or symbolize an act of caring and for some people the value of the symbolism alone is sufficient justification to continue treatment even if the treatment has no benefit or may even cause harm When families discuss their goals values and beliefs in advance it is possible to change attitudes toward medical treatments that only prolong a hopeless situation The focus of a helpful advance care planning discussion is not on patients rights but on how they would define good care if they were so ill they would not recover When individuals have told a family member when treatment should be stopped the family finds both emotional comfort and moral direction in what is always a difficult decision With good advance care planning forgoing treatment can become an act of caring Conversely when people have communicated their desire to continue treatment under specified situations perhaps based on religious or cultural beliefs families can support these decisions with full knowledge it is consistent with what their loved one has expressed Many adults claim that close family members know what they want even though they have never discussed future healthcare decisions with them This claim may seem plausible or it may be a way of avoiding a difficult subject Whatever the reason the claim is not accurate Neither loved ones nor health professionals are able to accurately predict what another person would choose for medical treatments Unless people talk explicitly about these issues they do not adequately understand how to choose for others While the potential outcomes of a successful advance care planning program are laudable a variety of significant barriers may interfere with implementation 1 avoidance of the subject by health professionals possibly due to a belief that the person is not sick enough may become upset is incapable of understanding or may be robbed of hope 2 professionals feeling uncomfortable or lacking confidence in their skills related to delivering bad news counseling on endoflife issues dealing with loss and grief and developing practical written advance directives 3 perceived or real lack of time 4 lack of reimbursement for advance care planning as a legitimate healthcare intervention Chapter 116 2007 Gundersen Lutheran Medical Foundation Inc 5 the belief that there are simply too many contingencies for individuals to consider regarding their future medical conditions 6 a sense that ACP discussions make no difference because there is no way to share or convey discussions and plans with other health professionals at some future time Advance care planning facilitators need to assess and understand the unique barriers to effective planning within their organization Throughout this program a variety of strategies will be offered to address these barriers Advance Directives The Plan The ideal outcome of advance care planning for many individuals is the creation of an advance directive that acknowledges the specific healthcare decisions that have been discussed and understood by all participants involved in the process The term advance directive is commonly used by health professionals although its meaning is not universally understood For those who undertake advance care planning facilitation it is important to have a clear understanding of this concept of the ways others use it and of related concepts such as living will and Power of A ttorney for Healthcare This program uses the terms Power of A ttorney for Healthcare and healthcare agent generically Power of Attorney for Healthcare will refer to a written advance directive in which one person appoints another persons to make health decisions should the person making the appointment become incapacitated Other terms used for the Power of Attorney for Healthcare document include durable power of attorney for healthcare medical power of attorney advance directive for healthcare special power of attorney terminal care document and advance healthcare directive The term used in this program for the designated person to make healthcare decisions is healthcare agent Terms used elsewhere include agent healthcare proxy representative surrogate and attorney in fact Additionally the substance of the Power of Attorney for Healthcare document and the authority given to the healthcare agent vary by state statute Some states have combined the living will with the option to designate a healthcare agent into one document It is important to become familiar with the terminology and content of your local or regional laws related to advance directives Many sources speak of advance directives as only written documents we use a broader definition Throughout Respecting Choices the phrase advance directives will be understood to be plans made by adults about how they want their healthcare decisions made if they should become unable to make decisions for themselves Advance directives in this definition can be made either verbally or in writing Adults for example may provide clear instructions for their families about when not to continue lifesustaining treatment Instructions of this nature may be clear and understood by family but never put in writing 2007 Gundersen Lutheran Medical Foundation Inc Chapter 117 Such verbal communication is considered an advance directive as it represents evidence of a person s goals values and beliefs and can be helpful in any decisionmaking situation Many persons choose to put some or all of their instructions in writing and Respecting Choices encourages adults to do this in the final stages of the process This can take several forms Documents can instruct family friends and physicians on when to continue or stop medical treatment Such a document is typically called a living will Another type of document identifies and authorizes another person to make medical and health decisions should the person become incapable Such a document is called a Power of Attorney for Healthcare Other documents now combine the type of instructions given in a living will with the possibility of appointing a person called a healthcare proxy agent or representative Terminology varies widely in different geographic areas It is important for you to understand the advance directive terminology in your community Informal Directives Are Also Acceptable Written advance directives may be executed under the rules and definitions of legal or regulatory guidelines or they might be written more informally like a letter or physician s narrative While there are advantages and disadvantages to using forms that comply with legal or regulatory guidelines any written document should strive to clearly and specifically communicate the goals values and beliefs of the person making it It should also be written so health professionals who might need to refer to it will understand it and know when and how to act on it Confusion can exist with many of the terms used in discussing advance directives The phrase advance directive is not widely known to the general public In asking someone if they have an advance directive additional explanation and questions are important The phrase living will is widely recognized but not always understood correctly Many people believe that it is a will for financial matters made while one is living Confusion can also exist with the phrase Power of Attorney for Healthcare Many people have heard o and in fact have a power of attorney for financial matters They often assume that the one for healthcare is the same In educating people about written advance directives it is important to first assess their level of understanding of these terms People sometimes say that they have a living will or a Power of Attomey for Healthcare when they in fact have a written document that deals exclusively with financial matters When possible it is best to actually review advance directive documents that people say they have created Keeping the Advance Care PlanningAdvance Directive Language Straight Will A legal document created by a competent adult to specify how to divide assets and property after death Chapter 118 2007 Gundersen Lutheran Medical Foundation Inc Living Will Power of Attorney Power of Attorney for H ealthcare Legal Guardian 2007 Gundersen Lutheran Medical Foundation Inc Written instructions that tell physicians and family members What lifesustaining treatment one does or does not Want at some future time if a person becomes unable to make decisions This document may go by many different names in different jurisdictions A legal document in which one person gives another the authority to make speci ed financial decisions or to assume certain financial responsibilities If this authority extends after the time that the person who made the appointment is competent it is called a durable power of attorney In this legal document a person a principal appoints someone else e g an agent to make healthcare decisions in the event that the person becomes incapable of doing so Such documents often allow the person creating the document to also provide instructions for the person they appoint This is a person appointed by a judge to make another s the ward s personal decisions including consenting to or refusing medical treatment In order to appoint a legal guardian the judge first would have to determine the person in question to be legally incompetent The legal guardian s authority could be limited to only financial decisions to only personal decisions or to both Chapter 119 Chapter 1 Exercises 1 List three reasons why planning for decisions at the end of life is important 2 The results of studies on the effectiveness of advance directives have yielded what kind of negative outcomes 3 Name three important distinctions between advance care planning and advance directives 4 Define the following Living Will Durable Power of Attorney for Healthcare Legal Guardian Chapter 120 2007 Gundersen Lutheran Medical Foundation Inc Appendix Advance Care Planning and the Law Common Misunderstandings Misunderstandings of what the law does and does not say regarding advance care planning and end of life treatment decisions can cause unnecessary concern and frustration These misunderstandings exist for both individuals as well as health professionals Advance care planning facilitators may often need to clarify and explain how many of the legal issues have been resolved Review the following examples of common misunderstandings How would you respond Misunderstandings from the Patient s Perspective 1 An attorney is needed to complete an advance directive 2 Completing an advance directive and naming a proxy means that I give up control over what happens to me Completing an advance directive means that I have a terminal illness An advance directive means I will no longer receive treatment IfI change my mind from what is in my advance directive no one will listen to me I must use my state s advance directive form in order for my wishes to be followed No matter what I say in my advance directive the doctors can do what they want I don t need an advance directive because my family can make my decisions for me 9 V 39gt IfI complete an advance directive in my state it will not be legally valid if I travel to another state 10 The best way to let my family know my choices is by signing a document Misunderstandings from the Health Professiona s Perspective 1 Advance directives are useless because they are not specific enough to be used for decision making when needed 2 Advance directives must comply with statutory forms do not transfer to other states and must be in writing to be enforced 3 Forgoing life sustaining interventions for patients who lack capacity requires evidence of the patient s wishes 4 Withholding or withdrawing artificial uids and nutrition from terminally ill or permanently unconscious patients is illegal 2007 Gundersen Lutheran Medical Foundation Inc Chapter 121 10 ll 12 13 When a terminally ill person has uncontrollable suffering there are no legal options to ease this suffering A relative is always the best proxy Stopping life sustaining treatment is the same as suicide or murder Providing comfortcare measures such as pain medication that may hasten the patient s death is murder Patients do not have the ability to really understand all of the treatment decisions they are asked to make In completing an advance directive it is better if no specific instructions are given in order to avoid confusion in interpreting what is meant In the absence of an advance directive the next of kin is the best substitute decision maker When patients are admitted to the hospital it is not appropriate to talk about any issues related to end of life treatment decisions It is legal to withdraw such extraordinary treatments such as a ventilator but not ordinary treatments such as intravenous uids 14 When conflicts arise over end of life treatment decisions it is always best to let the Chapter 122 courts decide 2007 Gundersen Lutheran Medical Foundation Inc Chapter 1 FURTHER READING Allen R amp Ventura N 2005 Advance directives use in acute care hospitals JONA s Healthcare Law Ethics amp Regulation 73 8691 Back A L Arnold R M amp Quill T E 2003 Hope for the best and prepare for the Worst Annals of Internal Medicine 1385 439443 Baker R Wu A W Teno J M Kreling B Damiano A M Rubin H R et al 2000 Family satisfaction with endoflife care in seriously ill hospitalized adults Journal of the American Geriatrics Society 485 Suppl S61 S69 Berns R amp Colvin E R 1998 The final story Events at the bedside of dying patients as told by survivors ANNA Journal American Nephrology Nurses Association 256 583587 Bookwala J Coppola K M Fagerlin A Ditto P H Danks J H amp Smucker W D 2001 Gender differences in older adults preferences for lifesustaining medical treatments and endoflife values Death Studies 252 127149 Callahan D 2003 Too much of a good thing How splendid technologies can go wrong Hastings Center Report 332 1922 Callahan D 2005 Death The distinguished thing Hastings Center Report Spec No S5S8 Calvin A 0 amp Eriksen L R 2006 Assessing advance care planning readiness in individuals with kidney failure Nephrology Nursing Journal Journal of the American Nephrology Nurses Association 332 165170 Cassell E J 1985 Talking with patients Cambridge MA MIT Press Cassell E J 1978 Informed consent in the therapeutic relationship Clinical aspects In W T Reich Ed Encyclopedia of Bioethics pp 767769 New York Simon amp Schuster Macmillan Collins S E 1999 Rethinking the Patient Self Determination Act Implementation Without effectiveness Journal of Nursing Law 63 2946 A controlled trial to improve care for seriously ill hospitalized patients The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments SUPPORT The SUPPORT principal investigators 1995 JAJWA The Journal of the American Medical Association 2 7 420 15911598 Covinsky K E Fuller J D Yaffe K Johnston C B Hamel M B Lynn J et al 2000 Communication and decisionmaking in seriously ill patients Findings of the 2007 Gundersen Lutheran Medical Foundation Inc Chapter 123 SUPPORT project The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments Journal of the American Geriatrics Society 485 Suppl S187S193 Crane M K Wittink M amp Doukas D J 2005 Respecting endoflife treatment preferences American Family Physician 727 12631268 Crawley L amp KagawaSinger M 2007 Racial cultural and ethnic factors affecting the quality of endoflife care in California Retrieved March 2007 httpwww chcf orgtopics chronicdisease index cfmitemID 1 3 1674 Curtis J R 2000 Communicating with patients and their families about advance care planning and endoflife care Respiratory care 4511 13851394 Delbanco T L 1992 Enriching the doctorpatient relationship by inviting the patient s perspective Annals of Internal Medicine 1 165 414418 Della Santina C amp Bernstein R H 2004 Wholepatient assessment goal planning and in ection points Their role in achieving quality endoflife care Clinics in Geriatric Medicine 204 595620 Derse A R 2005 Limitation of treatment at the endoflife Withholding and withdrawal Clinics in Geriatric Medicine 211 223238 Ditto P H amp Hawkins N A 2005 Advance directives and cancer decision making near the end of life Health Psychology 244 Suppl S63S70 Ditto P H Jacobson J A Smucker W D Danks J H amp Fagerlin A 2006 Context changes choices A prospective study of the effects of hospitalization on life sustaining treatment preferences Medical Decision Making 264 313322 Ditto P H Smucker W D Danks J H Jacobson J A Houts R M Fagerlin A et al 2003 Stability of older adults preferences for lifesustaining medical treatment Health Psychology 226 605615 Dresser R 2005 Schiavo s legacy The need for an objective standard Hastings Center Report 353 2022 Dunne J S 1965 The city of Gods A study in myth and mortality New York Collier MacMillan Publishers Dunne J S 1967 A search for God in time and memory New York CollierMacMillan Ltd Dunne J S 1973 Time and myth A meditation on storytelling as an exploration of life and death Garden City NY Doubleday and Company Inc Engelhardt H T 1986 The social meanings of illness Second Opinion 1 2739 Chapter 124 2007 Gundersen Lutheran Medical Foundation Inc Fagerlin A amp Schneider C E 2004 Enough The failure of the living will Hastings Center Report 342 3042 Farber N J Simpson P Salam T Collier V U Weiner J amp Boyer E G 2006 Physicians decisions to withhold and withdraw lifesustaining treatment Archives of Internal Medicine 1665 560564 Feeg V D amp Elebiary H 2005 Exploratory study on endoflife issues Barriers to palliative care and advance directives American Journal of Hospice amp Palliative Care 222 119124 Field M amp Cassel C Eds 1997 Approaching death Improving care at the end of life Washington DC National Academy Press Fins J J Maltby B S Friedmann E Greene M G Norris K Adelman R et al 2005 Contracts covenants and advance care planning An empirical study of the moral obligations of patient and proxy Journal of Pain amp Symptom Management 291 5568 Fried T R Bradley E H O Leary J R amp Byers A L 2005 Unmet desire for caregiverpatient communication and increased caregiver burden Journal of the American Geriatrics Society 531 5965 Fried T R Bradley E H Towle V R amp Allore H 2002 Understanding the treatment preferences of seriously ill patients New England Journal of Medicine 34 614 1061 1066 Gilligan C 1982 In a different voice Cambridge MA Harvard University Press Hammes BJ 1978 The views of scientific change and their evaluation an epistemological approach Unpublished doctoral dissertation University of Notre Dame South Bend Indiana Hammes B J 2001 What does it take to help adults successfully plan for future medical decisions Journal of Palliative Medicine 44 453456 Hammes B J amp Rooney B L 1998 Death and endoflife planning in one Midwestern community Archives of Internal Medicine 1584 383390 Hawkins N A Ditto P H Danks J H amp Smucker W D 2005 Micromanaging death Process preferences values and goals in endoflife medical decision making Gerontologist 451 107117 Heyland DK Dodek P Rocker G Groll D Gafni A Pichora D Shortt S Tranmer J Lazar N Kutsogiannis J Lam M Canadian Researchers EndofLife Network CARENET 2006 What matters most in endoflife care Perceptions of seriously ill patients and their family members CM4J Canadian Medical Association Journal 1745 627633 2007 Gundersen Lutheran Medical Foundation Inc Chapter 125 Hickey D P Shriner C J amp Perry S E 2005 Patients initiation of advance care planning discussions with their family physician Family Medicine 3 78 536 Hickman S E Hammes B J Moss A H amp Tolle S W 2005 Hope for the future Achieving the original intent of advance directives Hastings Center Report Spec No S26S30 Hines S C Glover J J Babrow A S Holley J L Badzek L A amp Moss A H 2001 Improving advance care planning by accommodating family preferences Journal of Palliative Medicine 44 481489 Jennings B 2005 Preface Improving end of life care Why has it been so difficult Hastings Center Report Spec No S2S4 Jordens C Little M Kerridge 1 amp McPhee J 2005 From advance directives to advance care planning Current legal status ethical rationales and a new research agenda Internal Medicine Journal 359 563566 KassBartelmes B L amp Hughes R 2004 Advance care planning Preferences for care at the end of life Journal of Pain amp Palliative Care Plzarmacotlzerapy 181 87109 Kirschner K L 2005 When Written advance directives are not enough Clinics in Geriatric Medicine 211 193209 Kolarik R C Arnold R M Fischer G S amp Tulsky J A 2002 Objectives for advance care planning Journal of Palliative Medicine 55 697704 Lambert H C McColl M A Gilbert J Wong J Murray G amp Shortt S E 2005 Factors affecting longtermcare residents decisionmaking processes as they formulate advance directives Gerontologist 455 626633 Larson D G amp Tobin D R 2000 Endoflife conversations Evolving practice and theory JAAM39 T he Journal of the American Medical Association 28412 15731578 Lazare A 1987 Shame and humiliation in the medical encounter Archives of Internal Medicine 1479 16531658 Leahman D 2004 Why the Patient SelfDetermination Act has failed North Carolina Medical Journal 654 249251 Levine C 2006 The President s Council on Autonomy Never mind Hastings Center Report 363 4647 Lidz C W Appelbaum P S amp Meisel A 1988 Two models of implementing informed consent Archives of Internal Medicine 1486 13851389 Lo B amp Steinbrook R 2004 Resuscitating advance directives Archives of Internal Medicine 16414 15011506 Chapter 126 2007 Gundersen Lutheran Medical Foundation Inc Loewy E H 1998 Ethical considerations in executing and implementing advance directives Archives of Internal Medicine 1584 321324 Lorenz K A Shugarman L R amp Lynn J 2006 Health care policy issues in endoflife care Journal of Palliative Medicine 93 731748 Lowder J L Buzney S J French C M amp Loue S 2004 The importance of planning for the future Care Management Journals 54 235244 Lynn J Schuster J L amp Kabcenell A 2000 Improving care for the end of life A sourcebook for health care managers and clinicians New York Oxford University Press Lynn J 2005 Endoflife options Health affairs 245 13771378 Lynn J Arkes H R Stevens M Cohn F Koenig B Fox E et al 2000 Rethinking fundamental assumptions SUPPORT s implications for future reform Study to Understand Prognoses and Preferences and Risks of Treatment Journal of the American Geriatrics Society 485 Suppl S214S221 Maltby B S amp Fins J J 2004 Informing the patientproxy covenant An educational approach for advance care planning Journal of Palliative Medicine 72 351355 Meier D E 2004 Variability in end of life care British Medical Journal 3287449 E2967 Meier D E amp Morrison R S 2002 Autonomy reconsidered New England Journal of Medicine 34614 10871089 Meisel A 2003 Quality of life and endoflife decisionmaking Quality of Life Research I2Suppl 1 9194 Meisel A Snyder L Quill T amp American College of Physicians American Society of Internal Medicine EndofLife Care Consensus Panel 2000 Seven legal barriers to endoflife care Myths realities and grains of truth JAJWA The Journal of the American Medical Association 28419 24952501 Miles S H Koepp R amp Weber E P 1996 Advance endoflife treatment planning A research review Archives of Internal Medicine I5610 10621068 Miller W R amp Rollnick S 2002 Motivational interviewing Preparing people for change 2nd ed New York The Guilford Press Molloy D W Guyatt G H Russo R Goeree R O Brien B J Bedard M et al 2000 Systematic implementation of an advance directive program in nursing homes A randomized controlled trial JAJWA The Journal of the American Medical Association 28311 14371444 2007 Gundersen Lutheran Medical Foundation Inc Chapter 127 Moore C D 2005 Communication issues and advance care planning Seminars in Oncology Nursing 211 1119 Morrison R S Chichin E Carter J Burack 0 Lantz M amp Meier D E 2005 The effect of a social work intervention to enhance advance care planning documentation in the nursing home Journal of the American Geriatrics Society 532 290294 Morrison R S Siu A L Leipzig R M Cassel C K amp Meier D E 2000 The hard task of improving the quality of care at the end of life Archives of Internal Medicine 1606 743747 Morrison W 2006 Thoughts on advance directives Journal of Palliative Medicine 92 483484 Moseley R Dobalian A amp Hatch R 2005 The problem with advance directives Maybe it is the medium not the message Archives of Gerontology amp Geriatrics 41 2 21 1219 Moskop J C 2004 Improving care at the end of life How advance care planning can help Palliative amp Supportive Care 22 191197 Murray T H amp Jennings B 2005 The quest to reform end of life care Rethinking assumptions and setting new directions Hastings Center Report Spec No S52S57 National Institutes of Health StateoftheScience Conference Statement Improving EndOf Life Care December 68 20042005 Journal of Pain amp Palliative Care Pharmacotherapy 193 7583 Nelson L J 2003 The Wendland case On families and fantasies Medical Ethics 102 8 Patel R V Sinuff T amp Cook D J 2004 In uencing advance directive completion rates in nonterminally ill patients A systematic review Journal of Critical Care 191 19 Patrick D L Curtis J R Engelberg R A Nielsen E amp McCown E 2003 Measuring and improving the quality of dying and death Annals of Internal Medicine 1395 Pt 2 410415 Pearlman R A Starks H Cain K C amp Cole W G 2005 Improvements in advance care planning in the Veterans Affairs system Results of a multifaceted intervention Archives of Internal Medicine 1656 667674 Pellegrino E amp Thomasma D C 1988 For the patient s good The restoration of bene cence in health care New York Oxford University Press Porter T Johnson P amp Warren N A 2005 Bioethical issues concerning death Death dying and endoflife rights Critical Care Nursing Quarterly 281 8592 Chapter 128 2007 Gundersen Lutheran Medical Foundation Inc Prendergast T J 2000 Handling con ict in endoflife care JAJWA The Journal of the American Medical Association 28324 3200 Prendergast T J 2001 Advance care planning Pitfalls progress promise Critical Care Medicine 292 Suppl N34N39 President s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research 1983 Washington DC US Government Printing Office Quill T E 1989 Recognizing and adjusting to barriers in doctorpatient communication Annals of Internal Medicine 1111 5157 Redman B K 1992 The process of patient education 7th ed St Louis MO CV Mosby Romer A L amp Hammes B J 2004 Communication trust and making choices Advance care planning four years on Journal of Palliative Medicine 72 335340 Sass H M 2005 Narrative approaches in patient information and communication Formosan Journal of Medical Humanities 612 1529 Schwartz C 2005 Decision making at the end of life Shifting sands Journal of the Royal Society of Medicine 987 297298 Schwartz C E Merriman M P Reed G W amp Hammes B J 2004 Measuring patient treatment preferences in endoflife care research Applications for advance care planning interventions and response shift research Journal of Palliative Medicine 72 233245 Schwartz C E Wheeler H B Hammes B Basque N Edmunds J Reed G et al 2002 Early intervention in planning endoflife care with ambulatory geriatric patients Results of a pilot trial Archives of Internal Medicine 1 6214 16111618 Schwartz J amp Estrin J 2005 Many seeking one final say on end of life New York Times A1 Seymour J Gott M Bellamy G Ahmedzai S H amp Clark D 2004 Planning for the end of life The views of older people about advance care statements Social Science amp Medicine 591 5768 Shugarman L R Lorenz K amp Lynn J 2005 Endoflife care An agenda for policy improvement Clinics in Geriatric Medicine 211 255272 Singer P A amp Bowman K W 2002 Quality care at the end of life British Medical Journal 3247349 12911292 Skene L 2005 The Schiavo and Korp cases Conceptualising endoflife decisionmaking Journal of Law amp Medicine 132 223229 2007 Gundersen Lutheran Medical Foundation Inc Chapter 129 Steinhauser K E Christakis N A Clipp E C McNeilly M Grambow S Parker J et al 2001 Preparing for the end of life Preferences of patients families physicians and other care providers Journal of Pain amp Symptom Management 223 727737 Steinhauser K E Christakis N A Clipp E C McNeilly M McIntyre L amp Tulsky J A 2000 Factors considered important at the end of life by patients family physicians and other care providers JAM439 The Journal of the American Medical Association 28419 24762482 Steinhauser K E Clipp E C McNeilly M Christakis N A McIntyre L M amp Tulsky J A 2000 In search of a good death Observations of patients families and providers Annals of Internal Medicine I3210 825832 Taylor S G 1985 Rights and responsibilities Nursepatient relationships Image the Journal of Nursing Scholarship 1 71 913 Teno J M 2004 Advance directives Time to move on Annals of Internal Medicine 1412 159160 Teno J M 2005 Measuring endoflife care outcomes retrospectively Journal of Palliative Medicine 8Suppl 1 S42S49 Teno J M Casey V A Welch L C amp EdgmanLevitan S 2001 Patientfocused familycentered endoflife medical care Views of the guidelines and bereaved family members Journal of Pain amp Symptom Management 223 738751 Teno J M Fisher E S Hamel M B Coppola K amp Dawson N V 2002 Medical care inconsistent with patients treatment goals Association with 1year Medicare resource use and survival Journal of the American Geriatrics Society 503 496500 Teno J M Licks S Lynn J Wenger N Connors A F Jr Phillips R S et al 1997 Do advance directives provide instructions that direct care SUPPORT investigators Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment Journal of the American Geriatrics Society 454 508512 Tierney W M Dexter P R Gramelspacher G P Perkins A J Zhou X H amp Wolinsky F D 2001 The effect of discussions about advance directives on patients satisfaction With primary care Journal of General Internal Medicine 161 3240 Tilden V P Tolle S Drach L amp Hickman S 2002 Measurement of quality of care and quality of life at the end of life Gerontologist 42Spec 3 7180 Tilden V P Tolle S W Drach L L amp Perrin N A 2004 Outofhospital death Advance care planning decedent symptoms and caregiver burden Journal of the American Geriatrics Society 524 532539 Chapter 130 2007 Gundersen Lutheran Medical Foundation Inc Tilden VP Tolle SW Nelson C A amp Fields J 2001 Family decisionmaking to Withdraw lifesustaining treatments for hospitalized patients Nurs Res 502 1051 15 Torke A M Garas N S Sexson W amp Branch W T 2005 Medical care at the end of life Views of African American patients in an urban hospital Journal of Palliative Medicine 83 593602 Tulsky J A 2005 Beyond advance directives Importance of communication skills at the end of life JAM4 2943 359365 van Delden J J 2004 The unfeasibility of requests for euthanasia in advance directives Journal of Medical Ethics 305 447451 Virmani J Schneiderman L J amp Kaplan R M 1994 Relationship of advance directives to physicianpatient communication Archives of Internal Medicine 1548 909913 Weiner J S amp Cole S A 2004 ACare A communication training program for shared decision making along a lifelimiting illness Palliative amp Supportive Care 23 23 1241 Weiner J S amp Cole S A 2004 Three principles to improve clinician communication for advance care planning Overcoming emotional cognitive and skill barriers Journal of Palliative Medicine 76 817829 Weiner J S amp Efferen L S 2005 Recognition and communication Essential elements to improving endoflife care Chest 1276 18861888 Weitzen S Teno J M Fennell M amp Mor V 2003 Factors associated with site of death A national study of Where people die Medical Care 412 323335 Westley C amp Briggs L A 2004 Using the stages of change model to improve communication about advance care planning Nursing Forum 393 512 White Y amp Fitzpatrick G 2006 Dialysis Prolonging life or prolonging dying Ethical legal and professional considerations for end of life decision making EdtnaErca Journal 322 99103 Winzelberg G S Hanson L C amp Tulsky J A 2005 Beyond autonomy Diversifying endoflife decisionmaking approaches to serve patients and families Journal of the American Geriatrics Society 536 10461050 Wreen M J 2004 Hypothetical autonomy and actual autonomy Some problem cases involving advance directives Journal of Clinical Ethics 154 319333 Yarborough M 2005 Deciding for others at the end of life Storytelling and moral agency Journal of Clinical Ethics 162 127143 2007 Gundersen Lutheran Medical Foundation Inc Chapter 131 Chapter 132 2007 Gundersen Lutheran Medical Foundation Inc Chapter 2 Facilitating Basic Advance Care Planning Discussions Respecting Ch0ices Chapter 2 Facilitating Basic Advance Care Planning Discussions Developing your skills as a facilitator of the advance care planning process is critical to achieving successful outcomes Depending on your experience background and profession you may have strengths in certain skills and need improvement in others Developing competency as a facilitator also takes experience in the application of these skills within the context of realworld situations It will be necessary to practice new skills by assisting family and friends in having advance care planning discussions You may also find it helpful to ask a mentor experienced in advance care planning to observe you in action and provide immediate feedback on the effectiveness of your skills The development of any skill requires baseline knowledge This chapter will begin by reviewing the reasons why it is difficult for individuals to participate in advance care planning why it is an important discussion and some useful guidelines in assessing decision making capacity Next this chapter will focus on the skills of facilitating basic advance care planning discussions with some re ections on the impact of culture and religion on endof life decision making The chapter will conclude with frequently asked questions Advance Care Planning Why Is This a Difficult Discussion There are a variety of reasons that make initiating advance care planning discussions difficult Discussing endoflife treatment decisions forces us to directly recognize our mortality For this reason many individuals including health professionals would rather avoid the topic Asking an individual if there might be a circumstance when they would rather be allowed to die than be maintained by medical treatment is difficult to ask and to hear As health professionals we may mistakenly focus on dying rather than asking the question How would you want to live well near the end of your life Ultimately the fear of death and its unknown cannot be changed but living as well as possible can be Often one of the most challenging issues for an individual is the unwillingness of other family members to discuss endoflife issues One of the vital roles of the advance care planning facilitator is to create a climate in which a family unit can comfortably explore goals values and beliefs Another barrier to endoflife treatment discussions is the fear of intimacy Revealing one s thoughts about dying and medical treatment at the end of life quickly re ects one s central values and beliefs One could feel forced to reveal a lack of faith in an afterlife how death would get them out of a desperate situation or some other private view For others who have never felt comfortable or safe revealing private beliefs these discussions may be threatening or impossible Fear can become a major barrier to sharing preferences about endoflife treatment choices Taking time to explore these issues 2007 Gundersen Lutheran Medical Foundation Inc Chapter 21 when individuals are relatively healthy is more productive than attempting to do it during a medical crisis While we can appreciate that initiating advance care planning discussions may be uncomfortable we also know that most individuals desire and expect it With practice and experience advance care planning facilitators develop a vocabulary for talking about goals values and beliefs and endoflife decisions As this vocabulary becomes as natural as the medical jargon used in everyday practice an environment of support comfort and encouragement is created Individuals are invited to participate in the advance care planning process by taking the time to understand re ect and discuss the multiple issues involved Remember that in order for informed decisions to be made people must first realize there is a need readiness to learn understand the choices unique to their health status receiving information and then be able to translate their decisions into specific preferences advance directive Basic Advance Care Planning for Any Adult Why Is It Important Many adults do not see the importance of participating in advance care planning if they are healthy One of the challenges for advance care planning facilitators is to develop strategies to engage and to motivate the healthy adult to view this process as a part of routine planning that everyone should begin Although many adults may avoid participating in advance care planning they express fears and opinions about healthcare decision making Many people worry about being kept alive if they are in a terminal condition being kept alive if they will die regardless of what treatments are provided Two points must be kept in mind when using the term terminal illness First because of increasing technology it has become more difficult to determine when someone is going to die when someone has a terminal illness Often the best that a physician can predict is that it is unlikely that a patient will survive or that the patient has only a 5 chance of survival Secondly if it becomes clear that survival is impossible and a patient is not likely to live for a long period of time advance directives may be helpful but not as crucial as in situations where an individual s survival is possible but recovery is not Adults may also have opinions regarding loss of function such as not wanting to live if they became unable to perform some type of daily activity They may require information on the options and adaptations to living with a disability or in a condition that allows for prolongation of life without recovery called a persistent vegetative state PVS This is a specific clinical diagnosis indicating higher brain function is gone but the brain stem or lower brain is intact The intact brain stem allows for the coordination of basic body functions like heartbeat and respiration but without the higher brain functions of thinking Chapter 22 2007 Gundersen Lutheran Medical Foundation Inc feeling or hearing Survival for years or even decades is possible with 24hour nursing care and arti cial nutrition and hydration An additional concern for any adult is the possibility of a devastating stroke head injury or other brain disease that results in neither death by brain death criteria nor PVS When questioned about such statements as Don t keep me alive if I m a vegetable most people mean that if they were permanently damaged and could not effectively interact with others or their world they would want all supportive medical treatment to stop However some would choose that their biological life be prolonged regardless of their ability to interact with their environment The purpose of basic advance care planning therefore is to help adults plan for unexpected events such as sudden illness or injury that renders them incapable of making healthcare decisions and from which they are unlikely to recover This process provides an opportunity for adults to express goals values and beliefs about living well and to offer guidance to those who will be making healthcare decisions on their behalf Determining DecisionMaking Capacity Participating effectively in advance care planning discussions making informed choices and executing a written advance directive requires a capable adult Confusion may exist between the words competence and capacity Competence is a legal term an adult is assumed competent unless a court rules he or she is incompetent Capacity on the other hand is a clinical term and is determined by health professionals in the clinical setting by assessing decisionmaking capacity Assessing decisionmaking capacity is important for three reasons 1 Capable adults always make their own decisions it is not their documents that make decisions 2 An advance directive document is valid only if completed by a capable adult 3 Advance directive documents become relevant only in the event that patients are determined to have lost the ability to make their own decisions The ability to assess decisionmaking capacity or to recognize when referral for such an assessment is needed is an important responsibility of advance care planning facilitators and other health professionals This determination is crucial when assisting in the creation of an advance directive document when assisting patients who do not have advance directives to make healthcare decisions and when deciding when patient preferences on a written document should be honored 2007 Gundersen Lutheran Medical Foundation Inc Chapter 23 Assessing capacity is not always easy or straightforward It may require referral to professionals who have developed considerable skill in this area However health professionals and advance care planning facilitators should understand the components of decisionmaking capacity and learn to gather data from the patient that may assist with this determination Decisionmaking capacity includes the following four components 1 The ability to understand that one has authority that there is a choice to be made 2 The ability to understand information the elements of informed consent 3 The ability to communicate a decision and the rationale for making it 4 The ability to make a decision consistent with one s values and goals that remains consistent over time or to be able to explain why one s values have changed The implications of the outcomes of this assessment are twofold 1 As long as people are capable they will continue to be informed about options and asked to make decisions even though an advance directive has been completed and 2 The advance directive will not become relevant unless the patient is assessed as incapacitated In the first instance health professionals must remember that an advance directive is a dynamic document that may need revision as changes in medical condition occur or when as a part of an ongoing conversation the patient expresses concerns or doubts The information in the advance directive provides the health professional with the opportunity to continue with the advance care planning process and to honor a patient s changing preferences In the second instance when the patient is assessed as incapacitated and has completed an advance directive the document can be activated meaning the preferences stated in the written document can be applied to treatment decisions This process requires a determination according to state statute or regulationregional standard of care that the patient is now incapable Some organizations choose to document this process on an activation form placed in the medical record The mechanism through which a patient s decisionmaking capacity may be reassessed and the advance directive deactivated must also be clearly defined It would be a mistake to assume that once a patient is determined to be incapacitated that determination could never be reversed To optimize the assessment of decisionmaking capacity it is important to 1 Assess for the presence of external factors that may impair capacity eg healthcare environment pressure from family and friends and caregiver bias 2 Assess for the presence of internal factors that may impair capacity eg medications pain language barriers stress intelligence and the disease process Chapter 24 2007 Gundersen Lutheran Medical Foundation Inc 3 Take adequate time for assessment thus resisting the desire for a quick determination 4 Correct potential barriers to communication such as hearing difficulties vision impairment and language 5 Remember that patients may be capable of making some decisions yet not others eg the patient may not be able to make a decision regarding withdrawing or withholding treatment yet be very capable of naming a surrogate decision maker Determination of decisionmaking capacity therefore needs to be ongoing It will be important to support healthcare agents andor family and remind them that the purpose of continually assessing decisionmaking capacity and deactivating an advance directive as appropriate ensures that whenever possible patients are allowed to make their own decisions Assessing Capacity to Complete an Advance Directive As an advance care planning facilitator you may be asked to assist in the completion of advance directives for individuals who have decreased mental functioning They may be confused and disoriented at times and unable to make major treatment decisions without assistance You may be accountable for assessing their capacity to participate in advance care planning and to complete an advance directive The capacity to complete an advance directive is more specific than the capacity to consent to treatment According to Silberfeld 1993 in assessing an individual s capacity to complete an advance directive that designates another person to make decisions on the individual s behalf such as a Power of Attorney for Healthcare there should be evidence that there is adequate patient understanding Following is a list of suggested assessment questions 1 Does the person understand that information in the advance directive contains choices that will be acted upon in the future not the present 2 Does the person understand that the preferences in the advance directive will be honored only when the person is no longer capable 3 Does the person understand the choice to select a surrogate decision maker andor specify medical preferences 4 Does the person understand that the choices made can be changed at any time 2007 Gundersen Lutheran Medical Foundation Inc Chapter 25 Interview Skills for Advance Care Planning Advance care planning is not a onesizefitsall process The advance care planning process must be individualized to meet the needs of the person seeking assistance The skills of Respecting Choices advance care planning facilitation include 1 general interview skills for any advance care planning discussion 2 interview skills for basic advance care planning 3 interview skills for advance care planning for adults with chronic progressive illness 4 interview skills for advance care planning for adults in longterm care facilities or for those who you believe are likely to die in the next 12 months Advance care planning facilitators must begin by assessing the needs of the individual and identifying when to involve other more qualified professionals In this chapter we focus on general interview skills for any advance care planning discussion and on interview skills for basic advance care planning These skills provide guidance to a wide range of healthcare providers who participate as members of the advance care planning team In chapters 4 and 5 we will focus on the interview skills for professionals who care for patients with chronic progressive illness or who live in longterm care facilities General Interview Skills for Any Advance Care Planning Discussion These general skills are used to initiate advance care planning discussions emphasize the importance of the process and aimed at motivating individuals to want to learn more feel supported and become active participants For these interview skills to be effective the advance care planning facilitator must integrate communication techniques of active listening and exploration Allowing people to tell their stories will reveal individual perspectives on planning for future medical care expose gaps in knowledge and identify fears and concerns By listening to the individuals responses appropriate replacement information can be given and strategies developed to assist in motivating the individual to continue to participate in the planning process 1 Affirm your relationship Assure individuals that you care will not abandon them and will assist in developing a plan over time when they are ready 2 Assure individuals that they will be assisted Inform individuals that you will be asking questions and listening to their fears and concerns Chapter 26 2007 Gundersen Lutheran Medical Foundation Inc 9 Inform individuals that these discussions are part of good healthcare for all adults who need to plan for unexpected events e g a car accident that would render them incapable of making their own healthcare decisions This is an opportunity to begin to explore issues answer questions and understand preferences Encourage people to see advance care planning as a process that may change over time Explore the meaning of statements and phrases eg I want to die with dignity I don t want to be a burden I don t want to be a vegetable Don t assume to understand the meaning of these statements Encouraging the individual to express the meaning of words and phrases assists in the clarification of goals values and beliefs and provides an opportunity for improved communication between the individual the family and healthcare providers Schedule adequate time to begin these conversations and determine the type and number of followup sessions Provide information for the individual to take home for further re ection and discussion Schedule the involvement of healthcare agents and other loved ones Involve others as necessary e g physician social worker nurse religious advisor 10 Document the discussion and followup plans T he following example is intended to illustrate application of some of the general interview skills for any advance care planning discussion Scenario Mr Fox is a healthy 56yearold patient who has hypertension controlled by medication He is scheduled for a routine physical examination and is experiencing no new problems or symptoms Initiating advance care planning may resemble the following exchange 2007 Gundersen Lutheran Medical Foundation Inc Mr Fox it s good to see you in such good health I want to take some time today to begin to discuss some issues that hopefully we will have more conversations about over the next several months and years Have you heard of advance care planning I m here to learn how to best help you and your loved ones understand what s involved in planning ahead for future healthcare decisions Mr Fox If I am healthy now what am I planning for We are trying to provide this type of assistance for all of our patients so you have time to learn about choices you have about your medical care if you were ever in a condition that would leave you unable to speak and make your own decisions such as a car accident or sudden illness Chapter 27 Our discussion today is only a beginning and we will take this at your own pace This often takes more time than most people think so I hope you will consider scheduling more time and perhaps involving more people if needed We have some materials and tools on advance care planning that you can take home with you that will assist you and your loved ones to start talking and learning together One of the important decisions I want you to think about is who you would choose to make decisions if you could not speak for yourself Would you be willing to bring this person back to meet with me so that we can all learn together Lastly I have brie y summarized our meeting today and want you to take it home with you to think about If you have questions before our next meeting here is how you can reach me or here is another resource for you to use Interview Skills for Basic Advance Care Planning Discussions The goals of these facilitation skills are to further engage the individual in participating in the advance care planning process and to assist in making three important decisions that any adult should consider choosing a healthcare agent exploring goals for medical care in the event of a severe brain injury with little chance for recovery and exploring religious cultural or personal beliefs that might in uence treatment choices Always begin by assessing the needs of the individual Begin by asking questions not merely providing information 1 Chapter 28 Assess motivation knowledge and beliefs By allowing and encouraging individuals to tell the story of why they want or need to talk about future healthcare decisions and what experiences they ve had a more comfortable environment is created as you begin from the person s perspective Individuals will trust that you are there to assist them in understanding and re ecting rather than pressing for immediate decisions Explore understanding of the purpose of basic advance care planning Explore experiences with loved ones or friends in making lifesustaining treatment choices Explore what was learned from these experiences e g what went well and what did not go well Assist individuals in choosing their decision maker healthcare agent Provide information regarding legalregulatory guidelines and responsibilities of a healthcare agent Provide criteria to consider in selecting the most appropriate healthcare agent a Is the person willing 2007 Gundersen Lutheran Medical Foundation Inc b Does the person understand the patient s goals values and beliefs c Can the person make decisions under pressure d Will the person honor or follow the plan Include the healthcare agent in discussions as soon as possible and encourage patients to initiate discussions about goals values and beliefs with their healthcare agents 5 Explore people s goals for medical care in the event that sudden illness or injury rendered them incapable of making their own healthcare decisions and unlikely to regain this ability Would they prefer that lifesustaining treatment be continued or withdrawn How serious would this injury or illness have to be for the goals of care to change from prolonging life to focusing primarily on comfort What types of medical interventions would or would not be acceptable to them 6 Explore religious cultural or personal beliefs that might in uence preferences for life sustaining treatment 7 Develop a followup plan that may include the following a Provide healthcare agents with information support and guidance to understand their role and to promote optimal communication among all parties b Provide blank advance directive worksheets asking that individuals and their surrogates begin to discuss and Write down the patient s decisions c Make referrals to other health professionals as needed to provide more information and counseling opportunities d Schedule return visits to review information provided and Written treatment decisions e Document all discussions and plans of care Provide Written summaries of the conversations for the individuals to take home f Scenario continued Mr Fox I m glad to see you brought your wife and son with you for our continued discussion of advance care planning If you have had a chance to review the materials you were given can you tell me what you now understand about the purpose of advance care planning and advance directives Have you known anyone who became suddenly ill or injured as in a car accident What was that experience like for you You just said you would never want to be kept alive on machines What do you mean by that 2007 Gundersen Lutheran Medical Foundation Inc Chapter 29 If you were in a car accident and suddenly lost your ability to know who you were and were unlikely to recover this ability there is a question for you to answer that could be very helpful to your healthcare agent and loved ones if they had to make decisions for you In the situation I just described would you want lifesustaining treatment to keep you alive Or would you prefer to have lifesustaining treatment withdrawn or withheld I see you have decided that your wife will be your decision maker if you cannot make your own decisions Mrs Fox sometimes being the decision maker can be very stressful Tell us what you understand about your husband s goals values and beliefss What kinds of discussions have you had together What would you nd most helpful at this point Importance of Healthcare Agency Strengthening the Process When individuals are asked to choose someone they would trust to make their healthcare decisions if they become incapable of doing so they often give a spontaneous answer Of course it would be my name of close relative Who else would it be They are unable to comprehend the impact of this choice yet it may be the most important one in the process of advance care planning There are many questions and concerns that should be addressed in choosing and preparing a healthcare agent What do we know about healthcare agents and the work they are asked to do How are they prepared to do this work What type of preparation should they receive Will healthcare professionals provide them with adequate support when the time comes for them to make some of the most critical and stressful decisions they will ever have to make in their lives How could they be better assisted in learning their new role Advance care planning facilitators can play a major role in strengthening the process of healthcare agency The ability of the chosen healthcare agent to accurately represent the preferences of the patient has come under intense scrutiny There are several findings from research that have supported the claim that healthcare agents are neither adequately prepared nor capable of fulfilling their responsibilities 1 Healthcare agents predictions of a loved one s preferences are no better than chance 2 Healthcare agents express confidence that they know the wishes of their loved ones although a high rate of disagreement between healthcare agents and loved ones understanding of preferences has been found When uncertain about a loved one s preferences healthcare agents understandably tend to err in favor of more rather than less treatment Chapter 210 2007 Gundersen Lutheran Medical Foundation Inc 3 Concerted efforts to prepare healthcare agents through the use of standardized clinical scenarios and discussions have been found to yield no signi cant improvement in the accuracy of decision making between healthcare agents and loved ones 4 Most individuals have had minimal or no discussion regarding their preferences with their chosen healthcare agents 5 Most individuals have had infrequent or inadequate discussions with their physicians regarding their endoflife decisions 6 Despite the lack of discussion individuals believe that healthcare agents andor physicians will be able to make decisions on their behalf if needed 7 Healthcare agents prefer more discussion with loved ones in exploring key issues such as how to consider the impact of suffering and uncertainty on decision making The research along with clinical experience witnessing healthcare agents struggle with decision making has led many professionals to be suspicious of decisions that are made and less confident that healthcare agents can be effective in fulfilling their role Conversely healthcare agents face several challenges in performing this role They are often thrown into roles for which they are unprepared and perhaps did not want to accept They agreed or were not even asked to be named on an advance directive document to make healthcare decisions for events that their loved ones do not want to talk about Healthcare agents often ask few questions for fear of upsetting their loved ones or bringing up an unpleasant conversation about dying They may receive vague direction from their loved ones such as Don t let me die the way my grandmother died When asked to make specific healthcare decisions for a loved one these types of vague statements are not helpful and may be confusing Healthcare agents may be presented with complex medical decisions and asked to provide timely responses during a medical crisis They are expected to make substituted judgment without imposing personal goals values and beliefs Moreover agents are often asked to relay conversations they may have had with their loved one regarding current clinical dilemmas providing clear evidence that they are truly acting in their loved ones behalf If the healthcare team suspects that the healthcare agent s decisions are based on emotional or financial stress they are viewed with caution If healthcare agents are unwilling to make decisions based on the recommendations of the healthcare team they are seen as indecisive and unhelpful Healthcare agents are expected to be liaisons with the rest of the family adding the stress of family dynamics to their decisionmaking process Adding to the burden of the healthcare agent s position are health professionals who are ever cognizant of the potential legal risks if the rights of an autonomous patient are not protected It is no wonder that the challenges faced by healthcare agents in performing their role leads to isolation and ineffectiveness 2007 Gundersen Lutheran Medical Foundation Inc Chapter 211 Emerging consensus that healthcare agents must be better prepared and supported in their role has led to recommendations regarding a more clear definition of an agent s responsibilities Some authors caution against the pitfalls in relying solely on substituted judgment or best interests as standards to judge the quality of a healthcare agent s decisions Other authors such as Fin 1999 Collopy 1999 and Blustein 1999 have offered thoughtful and intriguing insights into this discussion They suggest that the ability of the healthcare agent to do a good job may be largely in uenced by a clarification of the relationship between the patient and the agent and the degree of moral authority the patient grants Collopy and Blustein emphasize the role that some individuals expect the chosen healthcare agent to fulfill ie to make decisions based on a long and trusting relationship Healthcare agents are to have the courage to walk with patients and not abandon them with the knowledge that whatever decisions they make because they are made out of trust will be the ones the patients wanted them to make Fin provides a useful model for conceptualizing the role and authority of a healthcare agent In the traditional view of this role a contract is formed ie advance directive that directs a healthcare agent to make decisions consistent with their loved ones known preferences This type of relationship is advantageous for those who clearly know what their wishes are are able to articulate them desire control over their personhood even when incapable or may be distrustful of the actions of others As the word contract implies it is binding and offers little room for interpretation On the other hand there is an option to choose a less restrictive relationship that establishes a covenant between two people In this type of relationship one person trusts the ability of another person to make necessary interpretations and decisions in any circumstance that may present itself It is a relationship based on a trusting understanding of the life of another person and a commitment to make decisions most consistent with known values of how best to honor that life There is evidence that some patients and professionals would choose this type of relationship and grant either some or complete leeway to healthcare agents to make decisions in clinical situations that can best be understood only if they happen Of course the boundaries of such a relationship would need to be clarified in order for health professionals to honor such a covenant It would require a level of trust from health professionals that the agent s authority to have such leeway is in fact respecting the patient s goals values and beliefs The process of healthcare agency may be strengthened in a variety of ways Some of these strategies may be easy to implement others will require a change in attitude and an understanding of the role of the healthcare agent 1 Develop a standard of including healthcare agents in all advance care planning discussions Rather than having discussions without healthcare agents find creative ways to include them Chapter 212 2007 Gundersen Lutheran Medical Foundation Inc 2 Provide healthcare agents with information regarding their roles and responsibilities This may be in the form of information cards booklets videos or educational presentations 3 Send completed or revised advance directive documents to designated healthcare agents Ask that they read the documents and schedule discussions with patients families and other involved parties as needed 4 Encourage a discussion of the type of relationship and moral authority the patient desires When asking the patient to choose a healthcare agent it may be useful to ask exploratory questions documenting the patient s responses and communicating the information to the patient s healthcare agent What would you want the healthcare agent you have chosen to do El Strictly follow your wishes El Do what he or she thinks is best at the time even if unaware of your preferences Cultural and ReigiouslSpiritua Perspectives on Advance Care Planning Increasingly apparent in the United States is the fact that we live in a diverse society with multiple religious cultural and ethnic in uences that may have a bearing on the process and outcome of advance care planning While we articulate that we must keep these in uences in mind while providing quality healthcare we remain unclear as to how to effectively manage these in uences A great deal more research is needed to provide better direction The facilitation skills and approaches advocated in the Respecting Choices curriculum when implemented appropriately are inherently culturally sensitive By first assessing the needs of the individuals and their families the advance care planning facilitator can design a process that most appropriately addresses these needs and integrates cultural religious and personal goals values and beliefs Strategies for Communicating Cultural and ReligiousSpiritual Sensitivity Knowledge of cultural and religious perspectives can be extremely useful in predicting potential confusion and determining appropriate interventions past experience with individuals from these various perspectives should not include automatic assumptions regarding expected behavior The need for skills in cultural and religious sensitivity will only increase as the population continues to diversify Come to know the person first and their religious spiritual and cultural beliefs second Instead of making assumptions ask the following questions which may assist in a more accurate assessment of how culture or religion in uence healthcare decisions 1 Is information regarding prognosis openly discussed 2007 Gundersen Lutheran Medical Foundation Inc Chapter 213 6 7 If information regarding prognosis is openly discussed how does this information typically get handled Are death and dying topics appropriate for discussion How may this individual s perspectives vary from those of the stated religious or cultural perspective Does the patient desire complete disclosure If not how should decisions be made How is quality of life defined What level of trust does the person have in physiciansother healthcare providers Does the person prefer not to put personal preferences in writing 8 Offer alternative ways to communicate the person s endoflife treatment preferences a Focus on the advance care planning discussions rather than on completion of a document b Ask the person who he or she would trust to have these types of conversations and attempt to arrange this facilitation General strategies for Sensitivity in Facilitating Advance Care Planning Discussions 39gt Chapter 214 Assess people individually avoiding assumptions related to their ethnic affiliation Listen and explore Explore how the illness is affecting patients and their families Explain the purpose of the advance care planning discussion a Informed decision making is part of the healthcare professional s ethical and legal responsibility b Advance care planning is about understanding re ecting and discussing individual preferences c Advance care planning is becoming a part of routine care Identify potential barriers to initiating advance care planning discussions a distrust of authority figures healthcare professionals b fear of loss of control over decision making c superstitions about discussing prognosis or death d reading and language comprehension difficulties 2007 Gundersen Lutheran Medical Foundation Inc 6 Negotiate strategies to address barriers such as a Is there a preference for open communication How does this information typically get handled Are discussions about illnessprognosis considered offlimits b Assess individuals preferences for how decisions should be made Assure them that their decisions to have family members receive information make decisions etc will be respected if that is what they choose c Offer the use of nonmedical advance care planning facilitators d Facilitate the discussion in an unhurried manner Listen and explore e For individuals who fear the documentation of preferences focus on the value of the discussion alone the selection of a trusted decision maker and the inclusion of this person in informal discussions f For individuals who prefer to document their preferences take time to verbally review documents Provide materials in the appropriate language and reading level g Provide community opportunities to learn about advance care planning in a non stressful environment Culture Religion and Advance Care Planning The following section will begin to identify some of the cultural and religious spiritual factors to be considered It is meant as a resource for advance care planning facilitators It is impossible to thoroughly understand all the many differences that may exist indeed it may even be undesirable because healthcare professionals could run the risk of assuming what patients would want based on stated religious or cultural beliefs This type of stereotyping would interfere with assessment of patients within their own social context with their own unique interpretations of how their religions or cultures affect their current situations goals and values What remains critical however is that advance care planning facilitators be sensitive to all the factors that may in uence healthcare decisions while protecting autonomy as defined by the person This sensitivity also promotes an awareness of one s own biases and how they may in uence advance care planning facilitation Knowledge of religious and cultural in uences can help predict what issues may need attention or further exploration as well as determine the appropriate response of the healthcare professional Culture and Advance Care Planning The United States has moved rapidly to a culturally pluralistic society There has been a substantial increase in US cultural diversity between 1980 and 1990 due in large part to the increase in immigration and a growing cultural awareness most notably within Asian 2007 Gundersen Lutheran Medical Foundation Inc Chapter 215 Hispanic and Native American populations Con icts frustration and inappropriate medical treatment can result when healthcare professionals have expectations different from those of their patients For example advance care planning in Western society makes a variety of assumptions It assumes that individuals desire information and want to be educated that they want to participate in their medical decisions that they want to determine their future care that they are willing to discuss issues about death and dying and that their religiousspiritual beliefs exclude medical miracles Other cultures may make quite different assumptions Most of the cultural diversity research that has been done has focused largely on differences among Asian Hispanic black and nonHispanic white populations Identified areas of potential differences relating to advance care planning include completion of advance directives selection of a healthcare agent willingness to discuss endoflife issues and trust in healthcare providers A few examples will demonstrate these major differences Cultural diversity research has found that blacks are less likely than whites to complete advance directives and more likely to choose aggressive endoflife treatment Explanations proposed for these tendencies include fear of signing any document fear of not being adequately cared for and in some cases lower educational levels Hispanics too have been found to be unwilling to give any type of advance directive and are less likely than whites to choose no resuscitation options It is speculated that these findings are based on religious beliefs inadequate access and language barriers The in uence that language barriers can have may be illustrated by the English term proxy which in Spanish can be translated as one who has power over another There is also belief among some of these populations that completing an advance directive only invites a medical crisis and is in essence a bad omen As a culture Asians are known to hold strong convictions regarding the natural course of dying and are hesitant to even discuss the subject of death They are therefore less willing than whites to complete written advance directives instead they communicate their desire for less aggressive care verbally Many relatives act as informal caregivers and become actively involved in medical decisions They are protective of ill family members wanting to shield them from potentially harmful and distressing information that might rob them of hope Therefore they are offended that healthcare professionals so openly invite conversations regarding endoflife treatment options The role of the surrogate decision maker is also a source of confusion among these cultures First many do not understand when the surrogate s authority becomes effective or the types of decisions the surrogate can make Second some believe that the surrogate role places an inordinate burden on the person who agrees to serve in that capacity Last in order to avoid con ict it is common for people in these cultures to choose family or group decision makers which is consistent with their cultural styles Chapter 216 2007 Gundersen Lutheran Medical Foundation Inc Trust in healthcare professionals varies between cultures Hispanics and Asians have faith that physicians will make the best decisions possible while blacks and Whites tend to be less trusting In summary it is important to remember that culture is dynamic and complex One must avoid assuming that one s culture automatically determines one s beliefs behavior and preferences A commitment to listening to people s stories and to discovering their goals and values within the context of their individual and social situations is essential Religion and Advance Care Planning As people begin the process of advance care planning many Will question how their faith fits into the discussion and how their particular church feels about these issues While it is vitally important for them to understand that religious counseling is beyond the intent of advance care planning people often ask about religious beliefs and how they relate to advance care planning Provided here is some general information about the faith traditions that encompass the broadest number of people This information is by no means comprehensive rather it is a summary of the broad prevailing thoughts of each tradition These brief summaries are not official rulings nor do individuals professing a particular faith tradition automatically adhere to all its beliefs If patients wish to discuss this information in more detail encourage them to contact a member of the clergy or someone knowledgeable about these faith traditions For Many Faith Issues Affect Decisions About the Future What does my religious affiliation say about forgoing lifesustaining treatment That s a question many people Will ask as they begin thinking about advance care planning and advance directives In fact for many it would be unthinkable to make life and death decisions Without considering theological and ethical positions In comparing the Ways several prominent religious traditions approach decisions about future medical care it is apparent that they share a common respect for life holding it as a sacred gift from a creator They also recognize that death is an integral part of life Each religion for varying reasons and to varying degrees sees that in holding life sacred people should not be required to do What is morally unreasonable or What may bring useless suffering to the dying Defining What is unreasonable is What each religion attempts to do Discussing future medical care and indicating preferences for endoflife care through an advance directive is not only acceptable to all of these religious traditions it is a clear and direct Way to clarify a person s preferences preferences that may range from Withdrawing treatment to requiring that all possible treatments be provided 2007 Gundersen Lutheran Medical Foundation Inc Chapter 217 While facilitators may find guidelines either here or elsewhere about what is theologically or ethically acceptable for a particular religion remember that each case must be reviewed based on its own complexities and in light of a person s own values and faith Advance care planning is an opportunity for individuals to articulate their personal values regarding end of life care The Roman Catholic Tradition Bene t versus burden The Roman Catholic faith tradition affirms the dignity sanctity and value of all human life The church is vitally concerned about protecting the basic right to life of every human being especially those who are vulnerable as a result of disability or illness This concern does not require the use of all means possible to maintain physiological existence Generally speaking in Roman Catholic teaching the decision is made by weighing the benefit against the burden of medical treatment If a treatment offers a reasonable hope of benefit to the patient without the burden of excessive pain expense or other inconvenience it is acceptable It is the patient s right to weigh these factors and decide whether the burden outweighs the benefit and to decide whether lifepreserving measures will be used or withdrawn If a patient is no longer capable of expressing these wishes the patient s advance directive should be recognized According to the Church the ultimate goal in life is to share in the death and resurrection of Christ Therefore there comes a time in every person s life when he or she should be allowed to die As a general principle individuals are not required to accept medical treatment that is useless or presents a grave burden for themselves or others The focus is on the dignity of the person and compassionate care for the dying While the Church prefers that nutrition or hydration support be provided statements by the Executive Committee of the National Conference of Catholic Bishops and by the Pontifical Academy of Science say there are circumstances in which such treatments are either useless or gravely burdensome and can therefore legitimately be refused Roman Catholics desiring further information are encouraged to contact their parish priest or a hospital chaplain The LutheranProtestant Tradition It s acceptable to remove treatment deemed futile The Evangelical Lutheran Church of America ELCA does not have specific rules regarding advance care planning or advance directives Members are encouraged to read their Bibles to think and study and then to pray asking God for guidance Chapter 218 2007 Gundersen Lutheran Medical Foundation Inc The ELCA accepts the prevailing thought that life as a gift from the creator is sacred but that it is not an absolute value People are stewards of that gift and are called to protect care for and preserve the life they have been given At the same time useless or unreasonable efforts to preserve life are unnecessary If a treatment offers no clear benefit there is no ethical necessity for a person to receive it It is therefore acceptable for a person to forgo lifesustaining treatment in certain circumstances What about treatment that has already been started Does removing lifesustaining treatment cause a person s death The ELCA generally recognizes that it is not the act of withdrawing treatment that causes an individual s death rather the injury or illness that caused the medical crisis in the first place is simply being allowed to take its course For example in the case of a stroke victim on a respirator it is not the removal of the respirator that causes death it is the stroke itself Thus removing treatment can be a morally acceptable act in spite of the fact that it results in the patient s death This is also true in the case of artificial nutrition and hydration which is considered to be a treatment Nutritional support is initiated in the hope the patient will eventually recover but if it becomes clear that the patient will not recover the treatment is no longer ethically indicated and it may be removed The general point of view is that Lutherans live life in relationships with God and with others If the capacity for life is so severely diminished that an individual is completely cut off from those relationships and mere unconscious biological survival is left then human eXistence as a Christian in the Protestant tradition understands it is no longer present and lifesustaining treatment is no longer required Members should contact a member of the clergy or hospital chaplain for more information The Jewish Tradition Nothing may be done that hastens death The Jewish tradition believes God created life by breathing breath into an individual so one must actively protect this gift by pursuing health and wholeness throughout life and by absolutely not doing anything to end life For Jewish traditionalists the source for clarification of theological issues is the rabbinic law called the Halakhah This law sets up a test to determine what is permissible First and foremost it is forbidden to do anything that may hasten death actions likened to extinguishing a ickering ame by touching it For some Jewish people even removing a pillow or changing the position of a patient may be troublesome if it will hasten death Second and at the other end of the spectrum it is also forbidden to delay an oncoming death which the Jewish faith believes is God s will Therefore it is not only permissible to remove an impediment to a natural course of events that leads to death and departure of the soul it is 2007 Gundersen Lutheran Medical Foundation Inc Chapter 219 imperative Any withdrawal of treatment however must always be predicated on knowing that death is at hand which is almost impossible to discern The best Jewish legal experts are still undecided about what constitutes death at hand and for that reason withdrawing life support is more often an academic discussion than something that can be implemented Tension exists between the obligation to remove impediments to death and the prohibition of any move that will hasten it Attempting to nd a reasonable balance between the two the Jewish Orthodox tradition allows withdrawal of lifesustaining treatments in critical cases The Reformed Jewish tradition agrees adding that intravenous apparatus may be discontinued and the terminal patient may be allowed to die It is important to recognize that a decision to withdraw lifesustaining treatment is not based upon a patient s deteriorating quality of life rather the decision is based upon the observable medical criteria that indicate death is at hand which requires that any impediments to impending death be removed The impediments that one might be allowed to remove are those things that sustain life entirely such as when a patient is completely dependent on a respirator To determine whether the patient is completely dependent trial periods off the respirator may be requested Again it is exceedingly difficult to determine when death is at hand For more information about this tradition people should contact their local synagogue or rabbi The Conservative Christian Tradition Quality of life doesn t affect treatment decisions This summary of the conservative Christian tradition is broad encompassing information from a group of similar churches The conservative Christian tradition views life as a gift from God and as such birth and death are both by God s design Life should therefore not be prolonged when it is clear that life will end Neither should life be shortened when it is not specifically terminal regardless of its quality Lifesustaining procedures may be withheld from a patient who has a diagnosis of a terminal illness and for whom death is imminent But when death is not imminent it should not be hastened thus nutrition and hydration would not be withheld because the withdrawal rather than the initial illness would be considered the cause of death This tradition believes that God creates life at conception so it is important that the life of an unborn child be protected This would be of concem if a pregnant woman were in a terminal situation because the life of her baby would be threatened as well This tradition does not Chapter 220 2007 Gundersen Lutheran Medical Foundation Inc believe that the value of life stems from the quality of life as one experiences it or from one s activity or effectiveness in society a patient s quality of life has no bearing on endof life decisions If individuals faiths lead them to feel strongly about not withdrawing either hydration or nutrition they should discuss that with their physicians and their loved ones and they should write it in their advance directives The J ehovah s Witness Tradition Specific doctrine governs the use of blood products J ehovah s Witnesses do not object to medical treatment however they have specific doctrinal views concerning the use of blood based on their interpretation of several Bible passages Members of this faith are open to receiving medical attention in order to live a full and meaningful life Speci c treatments that they reject include receiving whole blood packed red blood cells plasma platelets white blood cells and autotransfusion of predeposited blood Individuals may or may not decide to reject albumin immune globulins tissue transplants and hemophiliac preparations They generally will accept Ringer s lactate normal saline hypertonic saline dextran gelatin hetastarch per uorochemicals and erthyropoietin Healthcare providers face a challenge when an adult J ehovah s Witness presents with a major health issue In order to show respect blood must not be forced upon the individual For individuals who believe that receiving blood products will erase all hope of eternal life treatment against their wishes may have profound effects on their quality of life Yet the medical community may become uncomfortable when a religious belief compromises the patient s treatment It is also difficult if a J ehovah s Witness comes to an emergency department in an unconscious state and has an unclear social history concerning his or her wishes regarding blood products The concerns of both Jehovah s Witness patients and the medical community can be addressed through the use of advance care planning and written advance directives By putting their wishes in writing and establishing a healthcare power of attorney or proxy individuals can feel secure knowing that the tenets of their faith will be observed Discussing those beliefs with their physician may help the physician reach an understanding of individuals choices prior to surgery or an unexpected illness If physicians feel they cannot accept the J ehovah s Witness stance other arrangements may need to be made Further written advance directive cards prepared in consultation with medical and legal authorities may relieve physicians and hospitals from liability in situations where blood products are withheld based on the documented decisions of J ehovah s Witness patients 2007 Gundersen Lutheran Medical Foundation Inc Chapter 221 Frequently Asked Questions about Facilitating Advance Care Planning Discussions While each advance care planning session is unique common problems and questions do arise for advance planning facilitators The responses to many of these questions are re ections at best Many deal with complex human medical ethical and legal issues It is impossible to provide definitive answers for every situation but by reviewing these examples you will be better prepared to respond appropriately when you are challenged It is important that you understand the policies of your organization and the legalregulatory guidelines in your geographic area Do agents or proxies have to be family members No Generally legalregulatory requirements allow persons completing a Power of Attorney for Healthcare great freedom in selecting the individuals who they feel will best represent them It is important that the person selected is willing discusses the person s values and preferences can respect these values and preferences and is able to make difficult decisions in stressful situations When people choose healthcare agents who are not close family it is important to inform family members who would still be included at the bedside In some cases individuals are chosen as agentsproxies to exclude family members who are not wanted at the bedside It may be wise to indicate in the special instructions section of the document that these family members should not be included in decisions or given information How do I help someone discuss future lifesustaining treatment when important family members refuse to participate Overcoming the numerous barriers to such a discussion can be difficult but is worth attempting These same barriers are likely to affect endoflife decision making if not addressed in advance It would be better to address these barriers early when everyone is less stressed and can participate fully Rather than attempting to force a discussion that someone does not want it may be necessary to find out why having the discussion is so objectionable In some cases showing the video may open up feelings or put people in the mood to share their reservations It might be a big step forward to simply get people to reveal why they are unwilling to discuss this topic When an individual is strongly opposed to such a discussion do not expect that change to take place in a few minutes or after one discussion Chapter 222 2007 Gundersen Lutheran Medical Foundation Inc If someone is trying to convince another person to complete an advance directive it is often helpful if he or she completes one first Modeling the behavior or do as I do is often more convincing than other reasons In some cases family members simply cannot deal with such a discussion This information is important to note because individuals who resist discussing endoflife decisions would be unlikely to be good choices for agent or proxy However these family members should be kept informed about what has been decided and about how decisions will be made How do you choose an agent or proxy without causing hurt feelings between family members This worry about hurt feelings is probably caused by two concerns First by choosing one family member over others one might fear that the rest of the family will believe that the chosen family member is more important or better loved than the others Second by choosing one person as agent one might fear that the rest of the family will be excluded from decision making These concerns are sometimes unwarranted Loved ones are often quite happy not to be picked The responsibility of being an agent or proxy is great and many loved ones are happy not to have it As for the second concern one can simply add an instruction to the document The instruction might read While I have picked person X to represent me if I am incapacitated I expect my agent or proxy to discuss any major medical decisions with the siblings if time permits What do you do if a family has strong disagreements about the type of instructions that would be acceptable for documents It is not unusual for families to have serious disagreements about when lifesustaining treatment may be forgone Families can and do re ect wide differences in society It is because of this pluralism that discussing endoflife decisions while everyone is still capable is so important The goal should not necessarily be to get everyone to agree First it is important to work on understanding what individuals believe and why If there is serious disagreement determine if people can support and respect each other s choices Sometimes individuals in a family cannot support or respect each other For example if one family member believes that stopping a feeding tube for someone in a persistent vegetative state is murder he or she may not respect or support such a decision for another In such a case it is important to designate an agent or proxy who will respect and make such decisions If possible it would be best to have everyone at least agree to how decisions will be made 2007 Gundersen Lutheran Medical Foundation Inc Chapter 223 Will one statejurisdiction honor the written advance directive from another statejurisdiction This is a difficult question to answer because legalregulatory requirements differ and courts have not ruled to provide direction In the United States most states have statutes that say that they will accept documents that are in substantial agreement with their statutes and were legally created in another state It certainly is safe to say that having a valid document is better than not having one There are many legal and ethical reasons to support utilizing a valid written advance directive from another jurisdiction The real question is not what will happen in another jurisdiction but what will happen in a health organization in another jurisdiction If the doctor or institution in another jurisdiction will not recognize a document the issue may end up in court Even if the court rules in favor of the legality of the document you still had to go to court exactly what the document was meant to avoid To avoid putting individuals at risk institutions should establish their own policies on this matter Given an adult s general right to refuse medical treatment there seems to be little risk by respecting an authentic valid directive regardless of in what jurisdiction it was created or what format the document uses It is not a good idea to have two documents from two different states because the one most recently created will be considered the valid document Chapter 224 2007 Gundersen Lutheran Medical Foundation Inc Chapter 2 Exercises 1 Describe how you would assist your healthy 40year old brother to understand the importance of advance care planning 2 List the qualities to consider in selecting a healthcare agent 4 Describe the strategies you Would use to initiate an advance care planning discussion with an individual who belongs to a religious group or culture different from your own 2007 Gundersen Lutheran Medical Foundation Inc Chapter 225 Chapter 2 FURTHER READING Blackhall L J Frank G Murphy S T Michel V Palmer J M amp Azen S P 1999 Ethnicity and attitudes towards life sustaining technology Social Science amp Medicine 4812 17791789 Blustein J 1999 Choosing for others as continuing a life story The problem of personal identity revisited Journal of Law Medicine amp Ethics 271 2031 Bradley E Walker L Blechner B amp Wetle T 1997 Assessing capacity to participate in discussions of advance directives in nursing homes Findings from a study of the Patient Self Determination Act Journal of the American Geriatrics Society 451 7983 Breslin J M 2005 Autonomy and the role of the family in making decisions at the end of life Journal of Clinical Ethics 161 1119 Briggs L 2004 Shifting the focus of advance care planning Using an indepth interview to build and strengthen relationships Journal of Palliative Medicine 72 341349 Brock D W 1996 What is the moral authority of family members to act as surrogates for incompetent patients Milbank Quarterly 744 599618 Bullock K 2006 Promoting advance directives among African Americans A faith based model Journal of Palliative Medicine 91 183195 ChambersEvans J amp Carnevale F A 2005 Dawning of awareness The experience of surrogate decision making at the end of life Journal of Clinical Ethics 161 2845 Collopy B J 1999 The moral underpinning of the proxyprovider relationship Issues of trust and distrust Journal of Law Medicine amp Ethics 271 3745 Della Santina C amp Bernstein R H 2004 Wholepatient assessment goal planning and in ection points Their role in achieving quality endoflife care Clinics in Geriatric Medicine 204 595620 Ditto P H 2006 What would Terri want On the psychological challenges of surrogate decision making Death Studies 302 135148 Ditto P H Danks J H Smucker W D Bookwala J Coppola K M Dresser R et al 2001 Advance directives as acts of communication A randomized controlled trial Archives of Internal Medicine 1613 421430 Ditto P H Druley J A Moore K A Danks J H amp Smucker W D 1996 Fates worse than death The role of valued life activities in healthstate evaluations Health Psychology 155 332343 Chapter 226 2007 Gundersen Lutheran Medical Foundation Inc Engelberg R A Patrick D L amp Curtis J R 2005 Correspondence between patients preferences and surrogates understandings for dying and death Journal of Pain amp Symptom Management 306 498509 Engelberg R A Patrick D L amp Curtis J R 2005 Correspondence between patients preferences and surrogates understandings for dying and death Journal of Pain amp Symptom Management 306 498509 Engelhardt J B McCliveReed K P Toseland R W Smith T L Larson D G amp Tobin D R 2006 Effects of a program for coordinated care of advanced illness on patients surrogates and healthcare costs A randomized trial American Journal of Managed Care 122 93100 Etchells E Darzins P Silberfeld M Singer P A McKenny J Naglie G et al 1999 Assessment of patient capacity to consent to treatment Journal of General Internal Medicine 141 2734 Fins J J Maltby B S Friedmann E Greene M G Norris K Adelman R et al 2005 Contracts covenants and advance care planning An empirical study of the moral obligations of patient and proxy Journal of Pain amp Symptom Management 291 5568 Frank G Blackhall L J Michel V Murphy S T Azen S P amp Park K 1998 A discourse of relationships in bioethics Patient autonomy and endoflife decision making among elderly Korean Americans Medical Anthropology Quarterly 124 403423 Fried T R Bradley E H amp Towle V R 2003 Valuing the outcomes of treatment Do patients and their caregivers agree Archives of Internal Medicine 16317 20732078 Gutheil I A amp Heyman J C 2005 Communication between older people and their health care agents Results of an intervention Health amp Social Work 302 107 1 16 Irwin M 2004 Prochoice living wills Bulletin of Medical Ethics 202 2124 KagawaSinger M amp Blackhall L J 2001 Negotiating crosscultural issues at the end of life You got to go where he lives JAJWA The Journal of the American Medical Association 28623 29933001 Koenig T L 2005 Caregivers use of spirituality in ethical decisionmaking Journal of Gerontological Social Work 4512 155172 Kuczewski M G 1999 Commentary Narrative views of personal identity and substituted judgment in surrogate decision making Journal of Law Medicine amp Ethics 271 3236 Kuczewski M G 2006 Our cultures our selves Toward an honest dialogue on race and endoflife decisions American Journal of Bioethics 65 1317 2007 Gundersen Lutheran Medical Foundation Inc Chapter 227 Kwak J amp Haley W E 2005 Current research findings on endoflife decision making among racially or ethnically diverse groups Gerontologist 455 634641 Lewis C L Hanson L C Golin C Garrett J M Cox C E Jackman A et al 2006 Surrogates perceptions about feeding tube placement decisions Patient Education amp Counseling 612 246252 Lo B Ruston D Kates L W Arnold R M Cohen C B FaberLangendoen K et al 2002 Discussing religious and spiritual issues at the end of life A practical guide for physicians JAM439 The Journal of the American Medical Association 2876 749754 Lockhart L K Ditto P H Danks J H Coppola K M amp Smucker W D 2001 The stability of older adults judgments of fates better and Worse than death Death Studies 254 299317 Maltby B S amp Fins J J 2004 Informing the patientproxy covenant An educational approach for advance care planning Journal of Palliative Medicine 72 351 355 McPherson C J amp AddingtonHall J M 2003 Judging the quality of care at the end of life Can proxies provide reliable information Social Science amp Medicine 561 95109 Meeker M A 2004 Family surrogate decision making at the end of life Seeing them through with care and respect Qualitative Health Research 142 204225 Molloy D W Silberfeld M Darzins P Guyatt G H Singer P A Rush B et al 1996 Measuring capacity to complete an advance directive Journal of the American Geriatrics Society 446 660664 Molloy D W amp Standish T I 1997 A guide to the Standardized MiniMental State Examination International Psychogeriatrics 9Suppl 1 8794 Morrison R S amp Meier D E 2004 High rates of advance care planning in New York City s elderly population Archives of Internal Medicine 16422 24212426 Morrison R S Zayas L H Mulvihill M Baskin S A amp Meier D E 1998 Barriers to completion of healthcare proxy forms A qualitative analysis of ethnic differences Journal of Clinical Ethics 92 118126 Murphy S T Palmer J M Azen S Frank G Michel V amp Blackhall L J 1996 Ethnicity and advance care directives Journal of Law Medicine amp Ethics 242 1081 17 Nolan M T Hughes M Narendra D P Sood J R Terry P B Astrow A B et al 2005 When patients lack capacity The roles that patients with terminal diagnoses would choose for their physicians and loved ones in making medical decisions Journal of Pain amp Symptom Management 304 342353 Chapter 228 2007 Gundersen Lutheran Medical Foundation Inc Patrick D L Pearlman R A Starks H E Cain K C Cole W G amp Uhlmann R F 1997 Validation of preferences for lifesustaining treatment Implications for advance care planning Annals of Internal Medicine 1277 509517 Phipps E True G Harris D Chong U Tester W Chavin S 1 et al 2003 Approaching the end of life Attitudes preferences and behaviors of African American and white patients and their family caregivers Journal of Clinical Oncology 213 549554 Shalowitz D 1 GarrettMayer E amp Wendler D 2006 The accuracy of surrogate decision makers A systematic review Archives of Internal Medicine 1665 493497 Shrank W H Kutner J S Richardson T Mularski R A Fischer S amp Kagawa Singer M 2005 Focus group findings about the in uence of culture on communication preferences in endoflife care Journal of General Internal Medicine 208 703709 Sulmasy D P 2005 Terri Schiavo and the Roman Catholic tradition of forgoing extraordinary means of care Journal of Law Medicine amp Ethics 332 359362 Sulmasy D P 2006 Spiritual issues in the care of dying patients It s okay between me and God JAM4 The Journal of the American Medical Association 29611 13851392 Sulmasy D P Terry P B Weisman C S Miller D J Stallings R Y Vettese M A et al 1998 The accuracy of substituted judgments in patients with terminal diagnoses Annals of Internal Medicine 1288 621629 Tolle S 2005 A study in what not to do Schiavo case reveals dangers of letting strangers make endoflife decisions Modern Healthcare 3514 22 Troyer J L amp McAuley W J 2006 Environmental contexts of ultimate decisions Why white nursing home residents are twice as likely as African American residents to have an advance directive Journals of Gerontology Series B Psychological Sciences amp Social Sciences 614 S194S202 True G Phipps E J Braitrnan L E Harralson T Harris D amp Tester W 2005 Treatment preferences and advance care planning at end of life The role of ethnicity and spiritual coping in cancer patients Annals of Behavioral Medicine 302 174179 Turner L 2005 From the local to the global Bioethics and the concept of culture Journal of Medicine amp Philosophy 303 305320 ZikmundFisher B J Sarr B Fagerlin A amp Ubel P A 2006 A matter of perspective Choosing for others differs from choosing for yourself in making treatment decisions Journal of General Internal Medicine 216 618622 Zimring S D 2006 Health care decisionmaking capacity A legal perspective for longterm care providers Journal of the American Medical Directors Association 75 322326 2007 Gundersen Lutheran Medical Foundation Inc Chapter 229 Chapter 230 2007 Gundersen Lutheran Medical Foundation Inc Chapter 3 Creating an Advance Directive Communicating the Plan Respecting Choices Chapter 3 Creating an Advance Directive Communicating the Plan The quality of advance care planning discussions Will be re ected in a document that effectively communicates individual goals values and beliefs about future medical treatments and endoflife preferences Optimally individuals their healthcare agents and other family members as appropriate have spent considerable time re ecting upon and understanding their choices for future medical care and Will present to you their ideas verbally or on an advance care planning Worksheet or planning guide Individuals may need assistance andor recommendations for choosing the communication tool that best serves their needs Once a tool is selected an advance care planning facilitator must ensure the accuracy and completion of the document This chapter Will discuss the options for creating an advance directive that accurately communicates an individual s choices for future medical care and Will explore the tools and materials for promoting and assisting with advance care planning Advance directive documents tools and language vary widely across the World As you read this chapter it would be helpful for you to refer to the advance directive document and advance care planning materials recommended by your organization or in your community Creating an Advance Directive Options for Communicating Choices for Future Medical Care 1 Directives or plans about future medical care communicated verbally to the physician surrogate decision maker other health professionals or family members 2 Written directives a Formal require signature date and witness or notarization 1 Specified in legalregulatory guidelines eg state statuteprovincial law a Living Will Instructive Directive b Power of Attorney for Healthcare 2 Meets all or most of the legalregulatory requirements a Medical Directives b Five Wishes c Other national andor local forms b Informal 1 A physician s dictation that documents a conversation with a patient 2 Letter or note from an adult 3 Values history 2007 Gundersen Lutheran Medical Foundation Inc Chapter 31 It is important to recognize the various options for communicating choices for future medical care and to recommend the one that best meets the individual s needs In order to make recommendations knowledge of the advantages and disadvantages of each type of communication plan will be explored Written documents offer several advantages over oral directives but many types of written tools are available Living Will is the term for the advance directive most widely recognized by the general public When adults ask for help in completing a living will they might be given a statutory or legal document that provides for the completion of only a narrow set of instructions These documents often state that treatment may be stopped if the person is terminally ill or in a persistent vegetative state PVS conditions that are often very strictly defined by the law While an adult may think of a condition described as terminal as any fatal condition the law may define it as a condition that will cause death soon despite treatment And although an adult may conceive of a vegetative state as being a broad set of conditions including severe dementia the law may define it narrowly as a condition of permanent unconscious with the brain stem intact The terminology and language are confusing and many adults who complete a living will believe the document applies to a wider set of circumstances than it actually does Living wills are restrictive because they address only a limited number of endoflife treatment decisions Decision makers must rely on limited instructions provided Living wills give some information about what a person wants but no information about who will make decisions or how decisions might be made If respect of the individual is to be promoted the individual s goals values and beliefs need to be carefully explored and expressed If the statutorylegal document is too limited then other documents or additional options must be considered The preferred advance directive document is one that designates a person who will make substitute decisions and specifies how and what decisions will be made eg the Power of Attorney for Healthcare This document allows for the designation of another person healthcare agent healthcare proxy representative with authority to make a broad range of healthcare decisions when the principal becomes incapacitated These documents have several advantages over a living will type of document First if adults have close trusting relationships they typically find it easy to choose a healthcare agent to make decisions for them Second these documents are more exible that the living will allowing a whole range of healthcare decisions including how decisions will be made if a patient is incapacitated but may recover that re ect an individual s unique circumstances Third these documents are extremely important for those adults who have no close family who live in alternate family structures or who have dysfunctional family relationships In these cases appointing a healthcare agents may be the only way to ensure that the person chosen to make decisions Chapter 32 2007 Gundersen Lutheran Medical Foundation Inc will have clear authority and may be given some sense of the process of decision making with other involved individuals In some cases an adult does not want to create a Power of Attorney for Healthcare or has no one to appoint to make healthcare decisions For example a woman who is the healthcare decision maker in her family recognizes that other family members would not be able to fill her role should she become incapacitated In a situation such as this an individual sometimes chooses to complete only an instructional document such as a living will By doing so responsibility for making decisions is removed from family members who would have difficulty making such decisions Although it is important to become familiar with the legalregulatory requirements in your community or organization some general points can be made about advance directive documents that appoint a decision maker 1 In a Power of Attorney for Healthcare type of document the person creating the document is often called the principal The person appointed is called an agent proxy or representative The legal requirements for signing witnessing or notarizing and dating need to be fully understood and followed It is unfortunate when these basic legal points are not addressed and therefore interfere with decisions when the principal is incapacitated and important decisions must be made Even when a legal document is not correctly completed it should not be ignored or disregarded decision making A technically invalid document however might open the door to doubt or question which could make decisions more complex or impossible 2 Often principals wish to appoint coagents proxies rather than an agent and alternate agents because the principal does not want to show favor for one family member over others or there is simply a preference for group decision making Legalregulatory guidelines may or may not address this request In general is not recommended to appoint coagents because circumstances arise in which decisions must be made quickly and one of the coagents may not be available This may undermine the usefulness of the document A principal s concerns for inclusive decision making can generally be addressed by speaking with alternate agents and other loved ones Many times candidates are relieved not to be selected and are willing to participate in discussions and listen to their loves ones goals values and beliefs The following type of instruction in the Power of Attomey for Healthcare document may satisfy the need to maintain an inclusive approach to healthcare decision making I have appointed my son X as my agent and my daughter Y as my alternate agent When time and circumstance permits I ask that they discuss decisions with each other and their other siblings 2007 Gundersen Lutheran Medical Foundation Inc Chapter 33 3 Advance care planning is a dynamic process and advance directive documents often need to be amended for many reasons Individual goals values beliefs and preferences may change with age or health condition Appointed healthcare agents may die divorce become incapacitated or become estranged Changing or amending an earlier document requires as much attention to legal detail as when the document was first created Changes or additions to instructions require either an addendum that is signed dated and witnessed in accordance with legalregulatory requirements or the creation of a new document The new preferences of the principal should be clear to the physician and healthcare agent When a new document is created all copies of the outdated document should be found and destroyed When an addendum is created it should be filed at the front of the original so this new information is not overlooked Some individuals may feel that the advance directive document recommended by their organization or community does not meet their needs They may prefer an alternate document because it is more personal more understandable or less intimidating While considered legal documents in some jurisdictions these informal documents may not provide legal or regulatory protection for physicians who act according to the individual s stated wishes Examples of formal documents include the Medical Directive Five Wishes and My Voice Informal documents include Values Histories and Instructional letters While these documents can be used as communication plans they may also be used to explore the goals values and beliefs of the individual and used as addenda to the legalregulatory document The Power of Attorney for Healthcare document widely used in the La Crosse community and in other regions in Wisconsin was developed to meet statutory requirements as well as to help individuals document goals values and beliefs for future medical care Advance care planning facilitators find this document helpful in guiding discussions and in helping individuals clarify their preferences Please review the La Crosse Power of Attorney for Healthcare document in appendix IV Competencies for Assisting with Completion of an Advance Directive Note These are guidelines only Refer to the legalregulatory requirements for your organizationcommunity for more speci c guidance on the accurate and thorough completion of an advance directive document In appendix I and appendix 1 of this chapter Respecting Choices has provided a template i e state statute information regarding advance directives for use in developing your own specific guidelines as well as a sample from the State of Wisconsin 1 Determine that the person has the capacity to participate in advance care planning and to create an advance directive If there is any doubt assess the individual s decisionmaking capacity or make a referral to an appropriate health professional Chapter 34 2007 Gundersen Lutheran Medical Foundation Inc 2 Assess the individual s understanding of the purpose of creating an advance directive and of the tool selected for documentation of healthcare preferences 3 Obtain basic information including a state of residence b general health medical condition c family members who are closely involved 4 Assist with evaluation of the appropriateness of the healthcare agent chosen by the individual if completing a Power of Attorney for Healthcare type of advance directive Ask the following a Is the selected persons willing to accept the responsibility b Is the person able to make difficult decisions under stress c Does the person know the individual s principal s goals values and beliefs d Will the person be able to make decisions in accordance with these goals values and beliefs e Does the individual principal have confidence in the healthcare agent s ability to make decisions in stressful situations 5 Make arrangements to involve the chosen healthcare agents if the answers to the questions in item 4 above suggest a need to do so 6 Record the healthcare agent s s evening daytime and mobilecellular telephone numbers 7 Record the chosen endoflife preferences as identified in the advance care planning discussions using the following suggestions a Record the patient39s statements about each scenario discussed If the person has serious underlying medical problems and does not want at any time a specific medical treatment clearly document specific preferences that are consistent with the patient s expressed views eg Do Not Resuscitate Do Not Intubate Do Not Use Antibiotics Do Not Hospitalize b Comply with legalregulatory guidelines regarding completion of specific questions and the need for initials on the document 8 Date sign and witness or notarize the document according to legalregulatory requirements 9 Provide copies and recommend that they be distributed to the patient healthcare agents and others as desired eg family members attorneys 2007 Gundersen Lutheran Medical Foundation Inc Chapter 35 10 Enter the document into the medical record or other storage retrieval system per protocol Typically it is best if the document is provided to the hospital where the person would be taken first in the event of a medical emergency Review the following a Is it from the person who signed it b Is it a legal document correctly signed dated and witnessed c If it gives instructions are they reasonably clear and able to be followed d Is there any reason to believe that the principal was nondecisional or was coerced into completing the document 11 If the document was completed without the involvement of the individual s physician andor healthcare agent recommend that the individual schedule an appointment to review the content of the document with the physician and healthcare agent or ask permission to send a copy directly to the physician Offer to meet jointly with the physician andor healthcare agent 12 Provide wallet cards that indicate where the advance directive document can be located e g hospital and the date the document was signed 13 Discourage completion of the document in one advance care planning session Encourage patients to take information home and discuss their preferences with all involved parties Schedule a followup session to review the document and make any necessary revisions Tools for Promoting and Assisting with Advance Care Planning The Respecting Choices Example A variety of tools are available to assist adults in assessing goals values and beliefs providing specific information and adequate understanding that will eventually lead to the creation of an advance directive document It is useful to reach agreement on the educational materials your organizationcommunity will provide so they can become integrated at all levels of the healthcare continuum and become familiar to all health professionals patients and consumers A program to promote and assist with advance care planning needs to do more than provide information about rights and types of advance directive documents Materials should be created with the conceptual framework underpinnings discussed in chapter 1 of this manual Materials should help identify barriers to the planning process actively engage the individual use narrative and storytelling as a primary tool and focus on advance care planning as an ethic of caring relationships In addition a quality advance care planning community engagement campaign needs to Chapter 36 2007 Gundersen Lutheran Medical Foundation Inc 1 be visibly present and expose adults to the idea of advance care planning on a regular basis 2 be seen in a variety of settings to make it seem like an activity that every person should consider 3 motivate individuals to move from not Wanting to participate to being open to discussing and considering the issues 4 assist individuals in concretely understanding the most important issues related to future healthcare decision making and to help them consider how they would Want to be treated and cared for Using short compelling stories is one Way to assist with understanding and re ection 5 help persons who are interested in advance care planning discuss their goals values and beliefs with loved ones 6 be exible so that a person who Wants basic information is not provided an everything youWantedtoknow manual about advance care planning 7 understand the limitation of materials in assisting With advance care planning Many people Will need personal assistance or motivation from trusted health professionals 8 address the cultural diversity that exists Within the community Educational Options In developing materials to educate people about the importance of advance care planning We recommend that the following options be considered 1 Written information brochures pamphlets or videos on the following topics a the importance of advance care planning for all adults b rights of individuals to make their own choices c descriptions of lifesustaining treatments their benefits and burdens d stories that depict some of the most common situations where advance care planning is important e resources available in the community and healthcare organizations that can assist in advance care planning 2 informational posters and displays communicating the importance of advance care planning 3 samples of the program s advance directive documents 2007 Gundersen Lutheran Medical Foundation Inc Chapter 37 4 advance care planning worksheets that can be used by patients healthcare agents and families to explore goals values and beliefs and begin to process the information they are receiving into treatment decisions To illustrate how the La Crosse community organized its approach to consistent and reliable consumer and patient education a brief description of the Making Choices materials follows More detailed information about these materials is available at wwwrespectingchoicesorg The Basic Information Card The information card assists healthcare providers in offering reliable and consistent information about an individual s right to advance care planning and brie y describes the different types of advance directives It addresses the use of an advance directive in an emergency situation and also reassures individuals that having an advance directive is optional It directs individuals to appropriate sources for more information This information card can be used in many different settings It may be used to meet the requirement in the Patient SelfDetermination Act PSDA to provide adult patients with information upon inpatient admission or enrollment The card can also be used in the outpatient setting when an individual requires basic information about advance care planning Video The video emphasizes how individuals goals values and beliefs in uence their healthcare decisions It encourages people to accept the responsibility to re ect and to discuss medical treatments they may or may not want The video demonstrates the need for advance care planning through reallife examples of patients and families involved in healthcare choices and their feelings regarding these situations It is an effective tool that provides an indepth look at the process people must engage in to complete an advance directive document by focusing on the importance of conversations rather than completing the document The video can be used in individual advance care planning facilitation or as a part of a group educational presentation when a resource person would be available to answer specific questions Before showing the video it is important to warn viewers of its frank and emotional impact Many viewers may have already had experiences with endoflife decisions or may be facing serious illness themselves The professional using the video needs to be prepared to deal with the emotional reactions that occur For viewers who have faced or will be facing serious illness it may be best to show the video in a private setting with carefully chosen family members or other loved ones Chapter 38 2007 Gundersen Lutheran Medical Foundation Inc It is always important to determine if showing the video is necessary Many people are already motivated to consider endoflife issues and do not need to view the video or they may learn more readily by facetoface discussion Advance Care Planning Informational Booklet The booklet expands on the information provided on the information card and video It emphasizes individuals rights to make healthcare choices defines advance care planning and describes types of advance directives in greater detail answering commonly asked questions It provides several stories about when advance care planning was useful and includes a glossary of terms with a resource list for more information The booklet is intended to stimulate re ection and encourage people to talk with their families and their healthcare providers about their treatment preferences Again it does not tell an individual how to complete a specific advance directive document The booklet can be used in individual advance care planning facilitation or may be provided to individuals or families who request more detailed information about advance care planning It should also be used when facilitation time is limited and the person would prefer to take something home to read Advance Care Planning Guide The advance care planning guide helps individuals re ect upon and discuss their personal goals values and beliefs through a series of questions Individuals are encouraged to look back at life experiences and then deal with present feelings ranging from fear to joy They are also encouraged to communicate their feelings as they relate to their future healthcare The advance care planning guide begins to define basic treatment choices and encourages individuals to seek more information about them This process facilitates the identification of some preliminary values and preferences about endoflife decisions The planning guide can be used along with the informational booklet and video as the initial step in the advance care planning process Your organization may choose to use additional patient educational materials Advance Care Planning Education Record The education record serves as a communication tool among healthcare providers It documents existing Written advance directives by type records the date documents Were filed and identifies the professional who entered them into the medical record It records the informational materials given and provides space for discussion of advance care planning issues and comments The education record is to be kept in a designated part of the medical record It can be copied and shared among healthcare institutions as appropriate 2007 Gundersen Lutheran Medical Foundation Inc Chapter 39 Wallet Card A Wallet card serves as a communication tool to alert others that an individual has exercised his or her right to have a written advance directive The Wallet card documents when the advance directive was initiated What type it is and with which healthcare institution it is filed It does not indicate specific information about the individual s preferences The Wallet card reminds individuals that they have initiated an advance directive and that they may need or Want to update it This card should alleviate concerns some people express about how they can alert healthcare professionals to the fact that they have executed an advance directive if something should happen when they are traveling Advance Care Planning Poster The Making Choices poster is a simple Way to remind both patients and providers about the importance of endoflife treatment planning and advance directives In the outpatient setting this poster can be used in examination rooms and in public places in a health facility eg the admissions office It provides a simple gentle Way to constantly remind everyone that advance care planning discussions are important Advance Care Planning Display This attractive 32 x 40 display can be hung on a Wall or set on an easel in lobby areas Waiting rooms or at the local library or mall It brings attention to advance care planning in a very subtle and respectful Way Making Choices materials can be placed in the brochure folders attached to the display to provide additional information and to direct people to the proper resources Information Card for Healthcare Agents The information card helps healthcare agents understand What it means to be an agent and What types of decisions they may be asked to make The information is enclosed in an attractive Hallmark card that can be sent to individuals as an invitation to accept appointment as healthcare agent It suggests action agents can take to prepare for their important role and is intended to engage them in dialogue The importance of understanding the preferences of the individuals who selected them to serve as healthcare agents is also stressed Chapter 310 2007 Gundersen Lutheran Medical Foundation Inc Chapter 3 Exercises 1 Identify three options for communicating an individual s end of life treatment plan 2 Describe the advantages of the durable Power of Attorney for Healthcare type of advance directive over the Living Will type for documenting decisions for future healthcare 3 Complete one of the advance care planning worksheets What feelings emerged What questions did you have 4 Describe the types of educational materials that would be useful in assisting with advance care planning 2007 Gundersen Lutheran Medical Foundation Inc Chapter 311 Appendix I State Statute Information Regarding Advance Directives Template Complete this template by reviewing your state statute or local regulations Use the Wisconsin example appendix II as a guide State I Terminology A Name of the Power of Attorney for Healthcare POAHC document and the relevant state statute chapter number 1 Define the term POAHC 2 Add any specific qualifications 3 4 B Name of the Living Will statute if one exists 1 The term for the Living Will a Define the term Living Will b List qualifications 1 2 2 Name of the prehospital Do Not Resuscitate statute if one exists List main quali cations a b C II Completing the Power of Attorney for Healthcare document A Designating a substitute decision maker make changes as needed Chapter 312 2007 Gundersen Lutheran Medical Foundation Inc 1 This person is called a 2 Must be years old 3 Can or cannot be one of the individual s healthcare providers unless he or she is a close relative 4 Alternate agents cancannot be designated 5 The names of the agents day and evening telephone numbers and addresses are required B Authority of substitute decision maker name 1 General authority Eliminate or revise the following 8 b make choices about starting or stopping medical care interpret instructions given in document review and release medical records and personal files move principal to another state if needed determine by Whom and Where medical care will be provided 2 Specific authority Identify those actions if any for which specific authority must be granted in order for an agent to take them Eliminate or revise the following 8 b C admit the individual to a nursing home or communitybased residential facility for longterm care order the Withholding or Withdrawing of feeding tube or IV hydration make decisions if the individual is pregnant C Additional statements of preferences Identify how additional statements of preferences can be Written 1 2 3 D Requirements for dating signing and Witnessing 1 Must be signed and dated 2 Witnesses must be list quali cations 2007 Gundersen Lutheran Medical Foundation Inc Chapter 313 c d 3 Witnesses must provide their signatures print their names provide complete addresses and indicate date witnessed E Making changes to the document Chapter 314 2007 Gundersen Lutheran Medical Foundation Inc Appendix II State Statute Information Regarding Advance Directives Wisconsin I Terminology A The Power of Attorney for Healthcare Chapter 155 1 4 Designates an agent to make decisions when the person is declared incapable of decision making by two physicians or a physician and a psychologist Agents may be given decisionmaking authority for nursing home placement and tube feeding Agents may not be given decisionmaking authority for admission to a mental facility This directive supersedes other directives B The Natural Death Act Chapter 154 1 Declaration to Physicians Living Will a Allows an adult to identify when treatment should be discontinued if a terminal condition or persistent vegetative state exists b These conditions must be determined by two physicians Prehospital donotresuscitate bracelet a Allows a qualified adult to obtain from the physician a wrist bracelet instructing emergency personnel not to provide resuscitation and to provide comfort care b The bracelet is designed by the Department of Health and Human Services to be of a uniform size color and description A qualified adult is one who has a terminal condition or an adult for whom resuscitation would not likely be effective or for whom resuscitation may cause significant harm II Completing the Power of Attorney for Healthcare document A Designating a substitute decision maker 1 called a healthcare agent 2 must be 18 years old 2007 Gundersen Lutheran Medical Foundation Inc Chapter 315 3 cannot be one of the individual s healthcare providers unless he or she is a close relative 4 can designate alternate agents 5 names of the agents day and evening telephone numbers and addresses are required B Authority of healthcare agent 1 General authority a make choices about starting or stopping medical care b interpret instructions given in document c review and release medical records and personal files d move principal to another state if needed for medical treatment e determine by whom and where medical care will be provided 2 Specific authority Specific authority must be granted in order for an agent to take any of the following actions a admit the individual to a nursing home or communitybased residential facility for longterm care b order the withholding or withdrawing of feeding tube or IV hydration c make decisions if the individual is pregnant C Additional statements of preferences 1 Written instructions may be provided regarding medical care including instructions for cardiopulmonary resuscitation CPR when to stop lifesustaining interventions pain and symptom control preferences during and after death etc 2 donation of organs or tissue 3 autopsy preferences D Requirements for dating signing and witnessing 1 Must be signed and dated in the presence of two witnesses 2 Witnesses must be a at least 18 years old b not a healthcare agent appointed by the person c not related to the person signing the document by blood marriage or adoption Chapter 316 2007 Gundersen Lutheran Medical Foundation Inc d not a healthcare provider directly caring for the person at the time e not an employee other than a social worker or chaplain f not aware of entitlements against the person s estate 3 Witnesses must provide their signatures print their names provide complete addresses and indicate date witnessed 2007 Gundersen Lutheran Medical Foundation Inc Chapter 317 Appendix III State Rulings Regarding EndofLife Decisions Wisconsin Advance care planning facilitators will also need to become familiar with case law that may in uence healthcare decision making As an example Wisconsin has two important state rulings that may impact the assistance and recommendations provided by a facilitator You will need to investigate the existence of such precedents in your own geographic area This understanding assists with clarification of questions and misunderstandings and may guide the development of organizational policies and procedures In the Matter of Guardianship of LW The Wisconsin Supreme Court ruled that all patients whether competent or not have a constitutionally protected right to refuse unwanted lifesustaining medical treatment including artificial nutrition and hydration This constitutionally protected right is equally applicable to patients who are diagnosed to be in a persistent vegetative state A legal guardian for a patient in a persistent vegetative state may direct the withholding or withdrawal of lifesustaining treatment if the guardian determines that doing so is in the best interests of the patient The guardian may direct the withholding or withdrawal of such treatment from a patient without prior court approval although the guardian s decision is subject to review by a court upon request of family members and other interested persons In the Matter of Guardianship of Edna MF The Wisconsin Supreme Court ruled that unless a patient is in a persistent vegetative state it is not in the patient s best interests to withhold or withdraw lifesustaining treatment unless the patient expressed a preference not to receive such treatment under those circumstances Further guardians may not substitute their own judgment of quality of life for that of such patients nor may they speculate about the choices a patient might have made Chapter 318 2007 Gundersen Lutheran Medical Foundation Inc Appendix IV The La Crosse Power of Attorney for Healthcare Document There are many types of power of attorney for healthcare documents The La Crosse Advance Directive Task Force developed the following document through the course of many revisions and by listening to the needs of individuals and advance care planning facilitators It is provided for your review as one example of a document that can assist in facilitating the creation of written plans 2007 Gundersen Lutheran Medical Foundation Chapter 319 Chapter 320 2007 Gundersen Lutheran Medical Foundation Inc How to Complete This Power of Attorney for Healthcare Overview The attached power of attorney for healthcare form is a legal document developed to meet the legal requirements for Wisconsin Minnesota and Iowa This document provides a way for a person to create a power of attorney for healthcare that will meet the basic requirements for these states This power of attorney for healthcare form allows you to appoint another person and alternate persons to make your own healthcare decisions if you become unable to make these decisions for yourself The person you appoint is your healthcare agent This document gives your health care agent authority to make your decisions only when you have been determined incapable by your physicians to make your own healthcare decisions It does not give your healthcare agent any authority to make your financial or other business decisions In addition it does not give your healthcare agent authority to make certain decisions about your mental health treatment Before completing this power of attorney for healthcare form take time to read it carefully It is also very important that you discuss your views values and this document with your healthcare agent If you do not closely involve your healthcare agent and you do not make a clear plan together your views and values may not be fully respected because they will not be understood If you want to document your views about future healthcare but do not want to or cannot use this power of attorney for healthcare form ask your health organization or attorney for advice about alternatives How to Complete This Document This power of attorney for healthcare form is divided into four parts Part I Appointing a Healthcare Agent Part II Authority of the Healthcare Agent Part III Statement of Desires Special Provisions or Limitations Part IV Making the Document Legal Steps to Follow In each of the four parts of the attached document you will find instructions Read and follow these instructions carefully The basic things you must do are Provide the information on page 1 Appoint at least one healthcare agent on page 3 Indicate choices for sections 1 2 and 3 on page 5 Indicate any written instructions you want in Part III Sign and date the document on page 10 Have the document witnessed Both witnesses must be present when you sign this document c3v14 uo1gtH How to Complete This Power of Attorney for Healthcare 3O5 If you wish to donate your body after death to medical science you should contact the closest medical school in your state and make arrangements through that medical school Here are some places to contact University of WisconsinMadison Medical School Mayo Medical School University of Iowa Medical School 608 2622888 7 am4 pm 507 2842201 or 507 2842511 319 3357762 After Completing This Document After you complete the document make copies to be given out as follows A photo or fax copy is as legally valid as an original One copy for yourself One copy for the healthcare agent and alternates appointed in the document One copy to share and discuss with your physician One copy for your record at the hospital where you would go in an emergency Extra copies to share with others if you wish loved ones your clergy and your attorney Need Assistance If you need assistance in completing this document you may contact the following places Gundersen Lutheran Gundersen Lutheran Medical Center 0 Pastoral Care 608 7827300 ext 53620 800 3629567 ext 53620 0 Patient Service Representative 608 7827300 ext 55993 800 3629567 ext 55993 0 Advance Care Planning Coordinator 608 7827300 ext 56000 800 3629567 ext 56000 Gundersen Lutheran Onalaska Clinic 0 Social Services 608 7758159 800 3629567 ext 58159 Or call the Gundersen Lutheran Regional Clinic or affiliate in your community Franciscan Skemp Healthcare Mayo Health System La Crosse Medical Center 608 7919754 800 3625454 ext 9754 Elder Services La Crosse 608 7919505 800 3625454 ext 9505 Home Health ServicesHospice 608 7919790 800 3625454 ext 9790 Or call the Franciscan Skemp Healthcare affiliate in your community All Franciscan Skemp Healthcare service sites can be accessed through a tollfree number 800 3625454 How to Complete This Power of Attorney for Healthcare 305 Power of Attorney for Healthcare for Name Date of Birth Address Telephone Copies of this document are being or have been given to 9 Power of Attorney for Healthcare Document 305 Power of Attorney for Healthcare Document Notice to the Person Making This Document You have the right to make decisions about your healthcare No healthcare may be given to you over your objection and necessary healthcare may not be stopped or withheld if you object Because your healthcare providers in some cases may not have had the opportunity to establish a longterm relationship with you they are often unfamiliar with your beliefs and values and the details of your family relationships This poses a problem if you be come physically or mentally unable to make decisions about your healthcare In order to avoid this problem you may sign this legal document to specify a person who you would want to make healthcare decisions for you if you become unable to make those decisions personally That person is known as your healthcare agent You should take some time to discuss your thoughts and beliefs about medical treatment with the person or persons you might specify You may state in this document any types of healthcare that you do or do not desire and you may limit the authority of your health care agent If your healthcare agent is unaware of your desires with respect to a particu lar healthcare decision he or she is required to determine what would be in your best interests in making the decision This is an important legal document It gives your agent broad powers to make health care decisions for you It revokes any prior power of attorney for healthcare that you may have made If you wish to change your Power of Attorney for Healthcare you may revoke this document at any time by destroying it by directing another person to de stroy it in your presence by signing a written and dated statement or by stating that it is revoked in the presence of two witnesses If you revoke you should notify your agent your healthcare providers and any other person to whom you have given a copy If your agent is your spouse and your marriage is annulled or you are divorced after signing this document the designation of your spouse as healthcare agent shall no longer be valid You may also use this document to make or refuse to make any anatomical gift upon your death If you use this document to make or refuse to make an anatomical gift this document revokes any prior document of gift you may have made You may revoke or change any anatomical gift that you make in this document by crossing out the anatomi cal gifts provision in this document Do not sign this document unless you clearly understand it It is suggested that you keep the original of this document on file with your physician 2 How to Complete This Power of Attorney for Healthcare 305 Part I Appointing a Person to Make My Healthcare Decisions When I Can t Make My Own Healthcare Decisions If I am no longer able to make my own healthcare decisions this document names the person I choose to make these choices for me This person will be my healthcare agent This person will make my healthcare decisions when I am determined to be incapable to make healthcare deci sions as provided under state law Instructions for Completing This Part When selecting someone to be your healthcare agent pick someone who knows you well who you trust who is willing to respect your views and values and who is able to make difficult decisions in stressful circumstances Often family members are good choices but not always Make sure that you pick someone who will closely follow what you want and will be a good advocate for you Whatever you do take time to discuss this document and your views with the persons you pick to be your agents Your healthcare agent should be at least 18 years or older and should not be one of your healthcare providers or an employee of your healthcare provider unless they are a close relative Space has been provided for a second and third alternate healthcare agent The person I choose as my Healthcare Agent is Name Day phone Evening phone Cell phone Address City State ZIP code If this healthcare agent is unable or unwilling to make these choices for me or if my spouse is designated as my healthcare agent and our marriage is annulled or we are divorced or legally separated then my next choice for a healthcare agent is Second choice Alternate Agent Name Day phone Evening phone Cell phone Address City State ZIP code How to Complete This Power of Attorney for Healthcare 305 5 If this alternate healthcare agent is unable or unwilling to make these choices for me or if my spouse is designated as my healthcare agent and our marriage is annulled or we are divorced or legally separated then my next choice for a healthcare agent is Third choice alternate agent Name Day phone Evening phone Cell phone Address City State ZIP code Part II General Authority of the Healthcare Agent 1 want my healthcare agent to be able to do the following Please cross out anything you do not want your healthcare agent to do that is listed below 0 To make choices for me about my medical care or services like tests medicine and surgery If treatment has already been started my healthcare agent can keep it going or have it stopped depending upon my stated instructions or my best interests 0 To interpret any instruction 1 have given in this form or given in other discussions according to my healthcare agent s understanding of my wishes and values 0 To review and release my medical records and personal files as needed for my medical care 0 To arrange for my medical care and treatment in Wisconsin Minnesota and Iowa or any other state as my healthcare agent thinks appropriate 0 To determine which health professionals and organizations provide my medical treatment 4 How to Complete This Power of Attorney for Healthcare 305 Instructions for Completing These Sections Put your initial on the line 682L to indicate you have selected a yes no or not applicable in the next three sections Draw a line through the statements you do not select 38 If you do not initial any line in a section and make no clear choice the statute in Wisconsin says your choice is considered to be no This means if you do not indicate a choice in Wisconsin only a court may make such a decision and not your healthcare agent 1 Agent authority to admit me to a nursing home or communitybased residential facility for the purpose of longterm care Yes my healthcare agent has authority if necessary to admit me to a nursing home or communitybased residential facility for a longterm stay subject to any limits I have set forth in this document No my healthcare agent does not have authority to admit me to a Wisconsin nursing home or a communitybased residential facility for a longterm stay If I initialed no or leave tbis section blank I cannot be admitted to a Wisconsin longterm care facility ivitboat a court order 2 Agent authority to order the withholding or withdrawal of feeding tube and IV hydration Yes my healthcare agent has authority to have a feeding tube or IV hydration Withheld or Withdrawn from me subject to any limits I have set forth in this document No my healthcare agent does not have authority to have a feeding tube or IV hydration Withheld or Withdrawn from me If I initialed no or leave tbis sec tion blank feeding tubes or IV bydration cannot be ivitbbeld or ivitbdraivn from me in Wisconsin ivitboat a court order 5 Agent authority to make decisions if I am pregnant Yes my healthcare agent has authority to make decisions for me if I am pregnant subject to any limits I have later set forth in this document No my healthcare agent does not have authority to make decisions for me if I am pregnant If I initialed no or leave tbis section blank bealtbcare deci sions can not be made for me daring my pregnancy ivitboat a court order Not applicable because I am either a male or no longer capable of becoming pregnant How to Complete This Power of Attorney for Healthcare 305 Part III Statement of Desires Special Provisions or Limitations My healthcare agent shall make decisions consistent with my stated desires and values and is subject to any special instructions or limitations that I may list here The following are some spe cific instructions for my healthcare agent and or physician providing my medical care If there are con icts among my known values and goals I want my agent to make the decision that would best represent my values and preferences If I require treatment in a state that does not recognize this Power of Attorney for Healthcare or my healthcare agent cannot be contacted I want the instructions below to be followed based on my common law and constitutional right to direct my own healthcare Instructions for Completing This Part You are not required to provide any written instructions or make any selections in Part III If you choose not to provide any instructions your healthcare agent will make decisions based on your oral instructions or what is considered your best interest If you choose not to provide any instructions it is recommended that you draw a line and write no instruc tions across the page Stopping Attempts of LifeProlonging Treatments Eitoer put your initial 68 32 on toe Zine next to eac0 statement if you agree or a raw a line toroug0 toe statement if you a o not agree If I reach a point where it is reasonably certain that I will not recover my abili ty to interact meaningfully with myself my family friends and environment I want to stop or withhold all treatments that might be used to prolong my existence Treatments I would not want if I were to reach this point include but are not limited to tube feedings IV hydration respiratorventilator CPR and antibiotics Pain and Symptom Control Eitoer put your initial 68 32 on toe Zine next to eac0 statement if you agree or a raw a line toroug0 toe statement if you a o not agree If I reach a point where efforts to prolong my life are stopped I want medical treatments and nursing care that will make me comfortable 6 How to Complete This Power of Attorney for Healthcare 305 Cardiopulmonary Resuscitation CPR My CPR choice listed below may be reconsidered by my healthcare agent in light of my other instructions or new medical information if I become incapable of making my own decisions If I do not want CPR attempted my physician should be made aware of this choice If I indicate below that I do not want CPR attempted this choice in itself will not stop emergency personnel from attempting CPR in an emergency Other documents may be needed to control the actions of emergency personnel Initial one of 2 oe following statements and draw at me 2 orozLg0 the statements 2 oat you do not womt I want CPR attempted unless my physician determines any one of the following 0 I have an incurable illness or injury and am dying OR 0 I have no reasonable chance of survival if my heart stops OR 0 I have little chance of longterm survival if my heart stops and the process of resuscitation would cause significant suffering I want CPR attempted if my heart stops I do not want CPR attempted if my heart stops but rather want to permit a natural death Other Instructions or Limitations I Want My Healthcare Agent to Follow How to Complete This Power of Attorney for Healthcare 305 7 If it is possible when I am Nearing My Death and Cannot Speak I Want My Friends and Family to Know I have the Following Thoughts and Feelings If I am Nearing My Death I Want the Following List the type of care ceremonies etc that would make dying more meaningful for you How to Complete This Power of Attorney for Healthcare 305 Persons I Want My Agent to Include in the Decision Process I ask that my healthcare agent make reasonable attempts to include the following persons in my healthcare decisions if there is time Religion I am of the faith and am a member of the congregation synagogue or worship group Phone number of congregation synagogue or worship group if known Please attempt to notify them Upon My Death After my death the following are my instructions If my healthcare agent does not have authority to make these decisions I ask that my next of kin and physician follow these requests if possible Autopsy Initial bot0 2 oefirsi ana secona Cooice orjasi one Cooice ana a raw a line 2 oroag0 iye statements 2 oat you a o not want I would accept an autopsy if it can help my blood relatives understand the cause of my death or assist them with their future healthcare decisions I would accept an autopsy if it can help the advancement of medicine or medical education I do not want an autopsy performed on me Donation of My Organs or Tissue Initial one ana a raw a line 2 oroag0 2 oe statements 2 oat you a o not want I wish to donate only the following organs or parts if possible name the specific organs or tissue I wish to donate any organs or tissue if I am a candidate I do not want to donate any organ or tissue How to Complete This Power of Attorney for Healthcare 305 9 Part IV Making the Document Legal Instructions for Completing This Part 10 Wisconsin residents must have this document signed and dated in the presence of two witnesses Minnesota or Iowa residents may have this document signed and dated in the presence of two witnesses or a notary public I am thinking clearly I agree with everything that is written in this document and I have made this document willingly My signature Date If I cannot sign my name I can ask someone to sign this document for me Signature of the person who I asked to sign this document for me Print the name of the person who I asked to sign this document for me Statement of Witnesses I know this person to be the individual identified in the document I believe him or her to be of sound mind and at least 18 years of age I personally witnessed him or her sign this document and I believe that he or she did so voluntarily By signing this document as a witness I certify that I am At least 18 years of age Not a healthcare agent appointed by the person signing this document Not related to the person signing this document by blood marriage or adoption Not directly financially responsible for that s person s healthcare Not a healthcare provider directly serving the person at this time Not an employee other than a social worker or chaplain of a healthcare provider directly serving the person at this time 0 Not aware that I am entitled to or have a claim against the person s estate Witness number 1 Signature Date Print name Address Witness number 2 Signature Date Print name Address How to Complete This Power of Attorney for Healthcare 305 Instructions for Notam39zatz on Residents of Iowa and Minnesota may have the document signed by a notary public authorized in their state instead of having two witnesses Notary Public In my presence on date name acknowledged his or her signature on this document or acknowledged that he or she authorized the person signing this document to sign on his or her behalf I am not named as a healthcare agent or alternate healthcare agent in this document Notary Stamp Signature of Notary How to Complete This Power of Attorney for Healthcare 305 11 Chapter 3 FURTHER READING Caring connections WWWcaringinfoorg Caring conversations workbook WWWmidbioorgmbcccorderhtm Critical care choices guide WWWaacnorg Detmar S B Muller M J Schornagel J H Wever L D amp Aaronson N K 2002 Healthrelated qualityoflife assessments and patientphysician communication A randomized controlled trial JAJWA The Journal of the American Medical Association 28823 30273034 Dunn H Hard choices for loving people CPR arti cial feeding comfort care and the patient with a lifethreatening illness WWWhardchoicescom Finding your way A guide to medical decisions near the endoflife WWWsachealthdecisionsorgfindinghtml Fins J J amp Maltby B 2003 F idelilty wisdom and love Patients and proxies in partnership An interactive workbook on endoflife decision making WWW delity WisdomandloVeorg The Five Wishes advance directive document WWWagingWithdignityorg The Go Wish game WWWcodaallianceorg Karel M J Powell J amp Cantor M D 2004 Using a Values discussion guide to facilitate communication in advance care planning Patient Education amp Counseling 551 223 1 Lynn J amp Harrold J Handbook for mortals Guidance for people facing serious illness WWWabcdcaringorg Making Choices patient education materials WWWrespectingchoicesorg Shape your health care future with health care advance directives WWWabanetorgaging Wisconsin Hospital Association Power Of Attorney For Healthcare document WWWWhaorglegalandregulatoryendo ifeaspX 2007 Gundersen Lutheran Medical Foundation Chapter 321 Chapter 322 2007 Gundersen Lutheran Medical Foundation Inc Chapter 4 Facilitating Advance Care Planning Discussions with Adults with Chronic Progressive Illness Respecting Choices Chapter 4 Facilitating Advance Care Planning Discussions with Adults with Chronic Progressive Illness While many of us may prefer to die suddenly and avoid endoflife treatment decisions most of us will die after a long history of chronic illness interspersed with periods of increased symptoms and gradual loss of function This slow illness trajectory allows individuals time to make their own choices although most do not quickly reach clearly formed preferences about the end of life Opening the door to discussion addressing barriers to information re ection and discussion may take months Each episode of exacerbation provides an opportunity to move patients slowly along in the process but these discussions will typically not occur unless they are initiated by a health professional There are many challenges to advance care planning for patients with chronic progressive illness Due to incomplete and inaccurate prognostic information many of these patients do not view themselves as dying or in need of making contingency plans for their medical decisions Many have been rescued several times by advances in medical science and technology and do not contemplate the potential complications that may occur They experience a slow progressive decline in function and often learn to adapt to their changing functional status and adjust goals for living well accordingly When patients with chronic progressive illness experience sudden but not unexpected complications that render them unable to make their own healthcare decisions responsibility for making these decisions falls to loved ones who are often unprepared and uninformed It is crucial to include designated healthcare agents and other loved ones in advance care planning discussions although initiating these types of family discussions can be very difficult Initiating a discussion about endoflife issues for patients with chronic progressive illness and their families need not focus initially on making decisions or on forgoing treatment It can be a time simply to explore attitudes and provide information Beginning advance care planning early in the course of chronic progressive illness can provide opportunities for ongoing and gradual conversations to slowly engage patients and their loved ones in participating in the planning process This chapter will begin by reviewing the interview skills for facilitating advance care planning discussions for adults with chronic progressive illness Implementing these skills effectively into practice however requires facilitators have additional knowledge about the types of medical choices individuals may face the benefits and burdens of lifesustaining treatments how to discuss withholding or withdrawing treatment and about how and when to maintain comfort 2007 Gundersen Lutheran Medical Foundation Inc Chapter 41 Advance Care Planning Interview Skills for Adults with Chronic Progressive lHness 1 Assess motivation knowledge and beliefs Begin advance care planning discussions slowly and over time Initially these conversations can be a time to explore goals values and beliefs without focusing on withdrawing or withholding treatment e g I know that many patients have concerns about controlling the use of a medical treatment if things got worse Are there issues or concerns you want to talk about with me 2 Explore understanding of health condition Assist patients in understanding the progression of their illnesses and related treatment decisions likely to be faced in the future Begin by assessing the patient s current level of understanding identifying gaps in knowledge and developing a list of questions to ask the physician 3 Explore experiences These may be experiences with family or friends who became seriously ill and lifesustaining treatment decisions were made or experiences with the last hospitalization for an exacerbation of the illness Clarify the meaning of patient responses and phrases such as I want to die with dignity or God will take me when He s ready Ask patients what they learned through these experiences that may help clarify their own goals values and beliefs 4 Explore the concept of living well to be further explained in chapter 5 5 Explore understanding of potential complications related to the patient s health condition 6 Explore patients understanding of healthcare decisions based on their own specific chronic illness Provide information based on this understanding For example cancer patients are more likely to need to make decisions regarding pain management and cardiopulmonary resuscitation CPR patients with lung and neuromuscular diseases will need to discuss decisions related to intubation and mechanical ventilation cardiac patients need to decide if CPR will be performed if their heart stops patients with chronic renal failure dependent upon dialysis need to consider if dialysis should continue if they suffer permanent serious neurological injury patients with progressive dementia need to consider if artificial nutrition should be provided if swallowing difficulties occur and in the case of severe dementia how lifethreatening infections should be treated 7 Develop a list of questions or concems and involve others as necessary Chapter 42 2007 Gundersen Lutheran Medical Foundation Inc 8 Explore individuals perspective on comfort care Some advance care planning facilitators because of their knowledge experience or role will feel comfortable and competent to provide detailed information on disease progression benefits and burdens of lifesustaining treatment and outcome statistics However others may not have the requisite knowledge and experience or they may feel it is inappropriate to provide information These advance care planning facilitators can use the interview skills of assessment exploring the need for information and assisting in the development of questions among others to refer the patient to other qualified professionals who can provide more focused assistance All advance care planning facilitators therefore must become familiar with the resources available e g palliative care team financial advisors physicians or other healthcare specialists to develop an appropriate followup plan of action to assist the patient in making individualized and informed treatment decisions T he following scenario provides examples of facilitation skills for advance care planning with adults who have chronic progressive illness Scenario Mr Dawson is a 78yearold man with severe chronic obstructive pulmonary disease COPD He is in the hospital for the second time in two months After the last admission to the hospital he spent two weeks in a longterm care facility to regain his strength He has no advance directive and appears to have done no advance care planning The patient s current medical condition and his evaluation and treatment plan are reviewed Mr Dawson I see that you have been having a difficult time lately with your lung disease Can you tell me what you understand about what s been happening with your J lungs If needed I d like to keep a list of questions you may have for your doctor What has the experience this time in the hospital meant to you As you know you have an illness that makes it dif cult to predict when a complication may occur and decisions may have to be made on your behalf I d like to begin to help you think about the situations that may occur because of your lung disease and about what decisions may need to be made If we start to help you think about these decisions now you can take the time you need to learn more talk to loved ones and make plans for what you might want Can you tell me what you know about complications that may happen because of your lung disease 2007 Gundersen Lutheran Medical Foundation Inc Chapter 43 What activities or experiences are most important for you to live well The reason I ask some of these questions is that when you think about what you might want for your future medical care it may be helpful to weigh these choices against what is J important to you to live well to enjoy life What fears or worries do you have about your illness or medical care As illustrated initiating advance care planning discussions with adults with chronic progressive illness begins by exploring assessing and identifying the needs of the individual This approach can set the stage for future more specific discussions about life sustaining treatment talking to loved ones and developing Written plans Helping Patients Understand the Benefits and Burdens of LifeSustaining Treatment The lifesustaining treatment choices We ask people to consider are difficult and have become increasingly complex as medical miracles have continued to evolve A common example is the introduction of CPR in the early 1960s CPR made it possible to resuscitate individuals Whose heartbeat and respiration had stopped CPR obviously helped many people recover but it also resulted in people who met brain death criteria Who were severely brain injured or whose lives could be sustained for only a short time For the first time in history it became necessary to allow people to die who initially had been spared death Such decisions are now faced on a daily basis in healthcare facilities around the country As people begin to discuss advance care planning they Will need assistance in understanding lifesustaining treatment options and in deciding Whether the treatments will assist them in achieving their goals values and beliefs Determining the value of any intervention involves a decisionmaking process that clarifies 1 the goals of each treatment eg If you wanted CPR if your heart or breathing were to stop What would your goals be What would you hope for 2 the benefits and burdens of each treatment eg In order for you to make an informed decision about CPR it is important that you understand the risks involved in attempting CPR and the side effects that may occur 3 Whether the benefits and burdens are compatible with the individual s goals eg What would an unacceptable outcome of CPR look like for you How can I assist you in Weighing the potential benefits of CPR against the risks and consequences I have just described Chapter 44 2007 Gundersen Lutheran Medical Foundation Inc This decisionmaking process therefore provides a framework within which an individual can make more informed choices Individuals can make general assessments about future medical care in terms of goals that might be possible without knowing a great deal about the speci c pathophysiology of the disease process or the specific technologies that might be used When thinking about the goals of treatment a person considers how it might help and might harm them under a particular circumstance Typically if a treatment does not provide benefit or if it is believed to do more harm than good people refuse it The variables involved in analyzing benefits and burdens of lifesustaining treatments are individual contextual and may be in uenced by religious or cultural beliefs For example lifesustaining treatments may be viewed as bene cial if they are effective in prolonging life effective in restoring function or relieving suffering if they promote a person s goals values and beliefs and are consistent with religious or cultural beliefs Conversely lifesustaining treatments may be viewed as burdensome if they result in more or intolerable pain or suffering are damaging to body image or functioning are psychologically harmful are physically or emotionally restrictive or are expensive to the ill person Unfortunately in many cases no obvious preference exists because a person experiences some benefit but also some burden For example it might be possible to prolong biological function but not restore consciousness or function may be maintained but with unrelieved pain and suffering Patients then face confusing choices and find themselves in a position of weighing the benefits against the burdens and how this analysis impact goals values and beliefs There are some important concepts to remember when assisting individuals in determining their goals for healthcare at the end of life Preferences and goals may change as illness progresses Certain goals may assume higher priorities over time or shortterm goals may be balanced against longterm goals Individuals may at times need the assistance of others in determining their goals Those who might provide assistance may include pain management specialists spiritual counselors or social workers among others Other individuals may have the goal of deferring as much decision making as possible to others eg the physician hospice team or family In order for an individual s goals to be honored an effective mechanism for communicating them to all members of the healthcare team must be established In developing interviewing techniques for assisting with goal setting health professionals must adapt and be sensitive to the cultural differences related to decision making that exist within their communities 2007 Gundersen Lutheran Medical Foundation Inc Chapter 45 Initiating discussions with individuals regarding goal setting as early as possible and in nonstressful situations respects the need to re ect on these issues and to take adequate time to make decisions Health professionals may mistakenly avoid proactive discussions missing opportunities for individuals to communicate preferences What Treatments Might Need to be Discussed To assist individuals in making informed medical decisions and in analyzing the benefits and burdens of these decisions they will need basic information about and understanding of the most common endoflife choices These choices fall into three categories 1 choices to initiate lifesustaining treatment 2 choices to withdraw or withhold lifesustaining treatment 3 choices related to comfort care The term lifesustaining treatment can be confusing meaning different things to different people depending on their knowledge experience and religious and cultural beliefs For some lifesustaining treatment means only interventions that are highly technical invasive or complicated such as ventilators and kidney dialysis machines In providing information on endoflife decisions people often need clarification and assistance in understanding that lifesustaining treatments include any intervention that prolongs life and are not highly technical invasive or complicated e g antibiotics IV uids and tube feedings These may be difficult distinctions for people to grasp if they believe that some treatments must be provided because they represent ordinary care Choices Related to Initiating LifeSustaining Treatment To effectively assist an individual in making lifesustaining treatment choices an advance care planning facilitator must have an understanding of the treatment and related benefits and burdens or refer the individual to an appropriate healthcare provider to obtain this information Armed with this information the advance care planning facilitator can develop strategies for discussion that are sensitive to the individual s goals values and beliefs When helping an individual make specific decisions regarding a lifesustaining treatment it is important to always begin by assessing the individual s understanding of the treatment goals for treatment outcomes and what has been discussed with the physician or healthcare provider Cardiopulmonary Resuscitation Facts People should understand that it is routine practice in hospitals and most other healthcare organizations to start CPR if a patient suffers a cardiac or respiratory arrest unless there are Chapter 46 2007 Gundersen Lutheran Medical Foundation Inc clear medical orders not to start eg a physician s order that CPR not be attempted In the case of a cardiac arrest emergency personnel cannot rely upon an advance directive to decide not to attempt CPR CPR is attempted when a person s breathing and heartbeat have stopped or have become ineffective Basic CPR involves pressing on the chest and blowing air into the lungs CPR typically lasts for 15 to 30 minutes It may require administration of medications insertion of a tube to assist with breathing intubation and electrical stimulation of the heart Individuals who are at clear risk for requiring CPR include those with heart disease and those who are frail especially those in longterm care facilities and those with endstage diseases Bene ts CPR is most beneficial for a healthy person whose heart has stopped suddenly from an accident or heart attack or for a person whose underlying condition can be effectively treated CPR can prolong life with good functioning especially in patients who are healthy and younger if it is initiated within 5 minutes of arrest Burdens Many patients mistakenly believe that CPR is successful in nearly half of all attempts When patients and families understand that CPR is not likely to lead to survival and could lead to a technological death they can make more informed decisions Fewer than 17 of hospitalized patients survive CPR and are discharged CPR is successful in fewer than 5 of people who have endstage chronic illness and in fewer than 2 of frail elderly living in longterm care facilities In addition the complications of CPR include the need for mechanical ventilation and corresponding intensive care unit ICU stay a decrease in mental functioning and broken ribs or collapsed lungs Strategies for Discussion Asking patients if CPR should be attempted if their heart stops can be difficult For those involved it may sound or feel as if all interest in caring for a patient is gone Asking this question in isolation of the patient s treatment goals may deliver the wrong message to the patient that nothing more can be done Additionally obtaining a DoNotResuscitate DNR order independent of assessing goals and options for endoflife care may be interpreted too broadly by health professionals who may make the assumption the patient does not want or require other endoflife treatments Avoid asking questions such as Do you want us to do everything including CPR This type of question implies that nothing will be done if the patient decides against CPR 2007 Gundersen Lutheran Medical Foundation Inc Chapter 47 Therefore a discussion of the patient s medical condition and goals for care should precede the question regarding CPR status Moreover CPR should be discussed in conjunction with the range of choices for endoflife care The common practice of obtaining a DNR order on admission Without placing the decision Within the context of the patient s goals and medical conditions and Without relation to all endoflife issues is simply unethical and borders on abandonment In certain cases it is appropriate for the physician to make a recommendation against CPR with associated rationale Scenario The following provides some examples of how to place the CPR decision Within the context of the patient s illness Mrs X you are being admitted for the fourth time in 6 months due to complications from your heart disease Do you understand what these complications are and why they are happening What information can I give you to help you understand how your medical condition has changed and what that might mean for you There are a number of decisions regarding your care and the many choices you can make depending on your goals and wishes I d like to start to talk about them now so we can have plenty of time to help you understand your choices discuss them with your loved ones and then make sure we follow your wishes I d like to begin to talk today about whether or not you would want CPR attempted if your heart or breathing were to stop What is your understanding of CPR What if anything have you discussed with your physician about CPR Many people make the CPR decision without understanding the risks involved What do you think the success rate of CPR is for someone like you who has been living with heart disease for a long time What goals do you have if you wanted to have CPR attempted What would you expect to happen I d like to give you some information about CPR that most people are unaware of or I d like to develop a list of questions regarding CPR for you to discuss with your physician in order to help you make an informed choice We want to respect your decision but we want to make sure you understand what s involved Unfortunately CPR is not as successful as most people think and there are complications from CPR as well CPR is less than 5 00 successful for people who have endstage chronic Chapter 48 2007 Gundersen Lutheran Medical Foundation Inc illness and less than 2 successful for the elderly who are living in longterm care facilities I realize these odds don t sound good and only you can decide if they are odds you are willing to take In addition the complications of CPR include the need for a breathing tube and a stay in the ICU broken ribs that can prolong recovery and some people lose mental abilities In discussing CPR it is may be necessary to review the following options Do Not Resuscitate DNR or Do Not Attempt Resuscitation DNAR In the event breathing or heartbeat stops there will be no attempts at assisted ventilation or external cardiac massage It is important to remember that this order says nothing regarding other aspects of care which will require further discussion and clarification Do Not Intubate DNI In the event breathing begins to fail or heartbeat stops resuscitation will be started but without intubation It may be important to write a DNI order in cases where respiratory failure is likely to occur first and intubation is not desired by the patient OutofFacility DNR Orders Some patients wish to have their DNR order respected and communicated when they are outside of a healthcare facility This may be accomplished by either a DNR bracelet or physician order form depending on state law or localregulatory standares Arti cial Ventilation Facts Unlike cardiac arrest respiratory arrest often occurs with some time to consider whether intubation and ventilation should be provided Nevertheless patients with advanced lung disease pulmonary infections and neuromuscular disorders who could become ventilatordependent should consider the type of medical interventions they would want if they experience respiratory failure Intubation involves the insertion of a tube through the mouth or nose into the lungs This tube can then be connected to a breathing machine or ventilator to artificially support breathing Benefits A variety of temporary and reversible conditions can interfere with adequate breathing or respiration which is the process of providing oxygen to the body and removing carbon dioxide These conditions include pneumonia the need for support following surgery or a collapsed lung resulting from an accident The breathing tube and artificial ventilator provide adequate respiration while the lung is healing or the body is recovering from another illness 2007 Gundersen Lutheran Medical Foundation Inc Chapter 49 For patients with chronic pulmonary diseases arti cial ventilation can be used on a trial basis to determine if patients can improve enough to adequately breathe on their own Artificial ventilation has the benefit of allowing the lungs to rest While other elements of patients conditions are being managed In both situations artificial ventilation may prolong life Burdens The breathing tube causes coughing throat irritation and the need to suction secretions from the airway The artificial ventilator may require some getting used to While the patient learns to let the machine do part or all of the breathing Psychologically the patient may be afraid or suffer sleep disturbances To treat the discomfort caused by the breathing tube the patient may require medications such as morphine and sedatives which may alter level of consciousness When using artificial ventilation for chronic pulmonary situations it may be difficult or impossible to later remove the ventilator In these cases patients are never able to resume breathing on their own and become ventilatordependent for the rest of their lives Arti cial ventilation may prolong dying Strategies for Discussion While most people would choose the use of artificial ventilation in situations of expected total recovery patients Who have underlying pulmonary problems have a different set of circumstances to consider Again patients goals of care need to be determined and information regarding trials of intervention be discussed Making a decision to select a trial of artificial ventilation to see if patients can recover and breathe on their own need not be translated into a lifelong sentence of dependency on the ventilator Shortterm goals can be discussed with patients with the intent that if the ventilator is no longer producing the intended results it can be removed Moreover the process of compassionate ventilator removal may need to be discussed to allay concerns of discomfort or suffocation Ventilator removal should follow established protocols that include time frames for Withdrawal appropriate methods for Withdrawal symptom management during Withdrawal and patient and family support Arti cial Nutrition and Hydration Facts Artificial nutrition and hydration involves the shortterm or longterm administration of a balanced mix of nutrients and uids via tubes nasogastric gastrostomy jejunostomy Chapter 410 2007 Gundersen Lutheran Medical Foundation Inc intravenous placed directly into the stomach intestine or vein Shortterm administration is needed to temporarily support a person while the cause of the inability to take nutrition is corrected e g recovery from surgery Longterm administration permanently sustains nutritional needs in patients who will never recover the ability to take nutrition on their own e g persistent vegetative states irreversible neurologic disorders Bene ts Life may be prolonged Patients personal andor religious preferences are honored Administration prevents Weakness dry mouth and thirst related to dehydration Burdens Feeding tubes are often associated with the aspiration of nutrients into the lungs causing pneumonia in 30 of cases or irritation and discomfort of the throat esophagus and stomach Intravenous uids increase the volume of secretions in the lungs making breathing more labored and necessitating more frequent suctioning Intravenous uids increase congestion in other parts of the body such as around tumors and organs causing pain and discomfort as Well as increased production of urine requiring frequent elimination and linen changes For some confused patients who are in danger of selfharm from pulling at tubes physical or chemical restraints may be required Strategies for Discussion There are a variety of reasons Why decisions regarding artificial nutrition and hydration are difficult and it is often helpful to explore fears with patients and their families Providing food and water may symbolize basic care and compassion there may be fear that the patient will experience pain and suffering or there may be religious or personal views to consider In providing information about the benefits and burdens of artificial nutrition and hydration it may be helpful for patients and families to learn What professionals have experienced When caring for patients who have artificial nutrition and hydration Withdrawn These professionals report observing a more peaceful comfortable death after nutrition and hydration are stopped There is evidence that this Withdrawal also produces a release of naturally occurring chemicals endorphins that act as natural pain relievers Death can be expected Within 3 to 14 days with the patient moving quickly into a coma and becoming unaware The side effects of dry mouth and thirst are alleviated by providing sips of Water ice chips lubricants meticulous oral care and sedation or analgesia 2007 Gundersen Lutheran Medical Foundation Inc Chapter 411 Scenario Mrs Jones I ve been asked to talk with you about one of the choices you seem to be struggling with One of the nurses told me you were very concerned about arti cial nutrition and hydration Could we talk about that issue now Mrs Jones Yes I would like to talk I Ve been told that I must continue food and water no matter What Otherwise I would starve to death and be uncomfortable I know this issue is full of emotion as well as some common misunderstandings I d like to help you sort it out We will respect the decision you make but I want to discuss some issues so that the decision you make is really the one that best re ects your wishes First can you tell me where you received this information about starvation ave you had any experiences with this issue in the past Do you have any religiousspiritual or cultural beliefs that would affect your decision on continuing arti cial nutrition and hydration Do you understand what arti cial nutrition and hydration is and how it is delivered Provide information as needed The word starvation is a powerful one full of emotion But it is also an inaccurate one Starvation describes a situation when our bodies desire food and water and are deprived of it While it may seem natural to you to continue to receive nutrition and hydration there are some side effects and situations when our bodies do not bene t from it and would actually be more comfortable without it T o assist you in making this decision I d like to give you some examples of the side effects that can occur because of receiving arti cial nutrition and hydration First the arti cial nutrition that is delivered through tubes o en moves out the stomach and slips into the lungs causing pneumonia This is called aspiration The arti cial hydration that is delivered may also increases the amount of fluid the body has to absorb causing extra uid in the lungs making it more dif cult to breathe The extra uid also causes congestion in other parts of the body causing pain and discomfort as well as the need to urinate more frequently Chapter 412 2007 Gundersen Lutheran Medical Foundation Inc There is also a fear that withholding nutrition and hydration is uncomfortable The experiences of professionals who care for the dying tell us that when arti cial nutrition and hydration are stopped the person appears more comfortable and peaceful People often die in 3 to 14 days but slip quickly into unconsciousness and J become unaware Antibiotics Facts In the past infections were the cause of death for many people both young and old Today We have sophisticated antibacterial agents that can often prevent death even in the case of serious infections Bene ts Antibiotics eliminate the source of infection and therefore the accompanying side effects of an infectious process such as fever chills and discomfort Antibiotics may prolong life Burdens Many antibiotics to treat infection need to be administered intravenously thus requiring initiating an IV site with the potential discomfort associated with starting the IV and maintaining patency Antibiotics may delay the dying process by temporarily reversing a fatal event in an incurable illness e g a person who has pneumonia due to endstage lung cancer Strategies for Discussion While antibiotics may be viewed as noninvasive and therefore a treatment that should be given health professionals can help patients and families evaluate this choice in light of their situation and goals of care There can come a time when death is acceptable and may be Welcomed particularly when the patient is permanently unable to interact will surely get Worse and will die Within the next months or year Treating an infection may only delay death Without particular bene t to the individual being treated Conversely antibiotics may be needed to treat discomfort during the dying process even for situations Where death is inevitable Dialysis Facts Dialysis is a treatment provided to an individual whose kidneys have stopped Working The kidneys take the Waste out of the bloodstream put there by the body s cells If this Waste is not removed it will build up and ultimately cause death 2007 Gundersen Lutheran Medical Foundation Inc Chapter 413 Bene ts Dialysis removes toxic waste products allowing a person s other vital organs to function more normally Dialysis may prolong life Burdens Dialysis involves the insertion of catheters into the bloodstream and up to several hours of removing and filtering the patient s blood several times a week Once kidney function is gone patients are dependent on dialysis for the rest of their lives or they may receive kidney transplants Expense Dialysis may prolong the dying process Strategies for Discussion Patients need to understand that making a decision for dialysis may be a longterm commitment unless kidney function can be restored or a transplant obtained For some patients the choice of dialysis is temporary and has few burdens however for patients who determine that their quality of life has been permanently and seriously compromised dialysis may have little value and continue to be a significant personal burden For those who are contemplating the withdrawal of dialysis it is necessary to explain the process of withdrawal and how the side effects of the buildup of toxins from the kidney can be managed successfully with the use of analgesics and sedatives With the buildup of toxins in the bloodstream patients typically go into a coma become unaware and their heart stops beating Once dialysis is stopped in patients with no kidney function death usually occurs in 5 to 8 days Other Treatments There are many other medications or treatments that prolong life and maintain function for example insulin blood or blood products and medications or devices that control blood pressure or heart rhythm While it may at first seem unusual to consider stopping treatments that normally serve to benefit the patient when a decision has been made to withdraw life sustaining treatment and allow death to occur all medications and treatments can be evaluated to determine their continued effectiveness in providing benefit or comfort in the dying process Chapter 414 2007 Gundersen Lutheran Medical Foundation Inc In addition to making choices regarding which lifesustaining interventions to accept or withhold patients may also need to decide when and if these same interventions should be withdrawn Choices Related to Withdrawing LifeSustaining Treatment and the Use of Timelimited Trials There is a common fear that once a lifesustaining treatment is started it can or will never be withdrawn This may lead individuals to make statements such as I don t want to be hooked up to machines or I don t want any tubes Indeed these fears may be translated into decisions that make it more difficult for health professionals and healthcare agents to attempt shortterm trials of interventions that could be beneficial and consistent with established goals However individuals may need reassurance that after a trial of aggressive treatment that is not serving the purpose for which it was started it can be compassionately withdrawn In addition to needing help understanding that there is no moral or legal distinction between withholding treatment and withdrawing treatment individuals may also need help reconciling the emotional differences between the two actions Both actions withholding treatment and withdrawing it result in the same outcome of allowing the person to die of their underlying disease process The central moral question is whether or not there is justification to start or continue a treatment for a patient given the circumstances of the situation e g the person s diagnosis prognosis and goals and values as well as the benefits and burdens of treatment It is useful to describe a scenario that helps the patient understand that a treatment that is started for a perceived benefit can later be removed if the burden becomes unacceptable ie timelimited trial A common example is the patient with chronic obstructive pulmonary disease who is willing to be placed on a ventilator to see if pneumonia can be effectively treated but has concerns about being maintained on the ventilator if there is not an acceptable recovery It would be important to discuss the expected goals for recovery the length of time the patient is willing to wait and the extent of burden the patient is willing to accept The criteria for withdrawing the ventilator can be discussed prior to initiation and written in the advance directive In considering such timelimited trials of lifesustaining treatment it is critical to adequately prepare the healthcare agent and other loved ones for the potential reality of withdrawing such treatment Choices Related to Comfort Care Please make me comfortable is a phrase expressed by healthy adults as well as dying patients and is an important objective of care for health professionals However what does 2007 Gundersen Lutheran Medical Foundation Inc Chapter 415 comfort care mean Consistent with the decisionmaking process for other endoflife decisions the patient s goals for comfort care need to be determined Professionals can take an active role in providing information on comfort care options assessing current state of comfort and implementing effective interventions as desired by the patient to relieve distressing symptoms Healthcare agents loved ones as Well as health professionals are often concerned about shortening a patient s life through the administration of medications to control the physical symptoms of the dying process This fear is often unwarranted and may result in less than optimal symptom control Health professionals must understand that all medical interventions have potential risks and benefits and that the patients themselves should decide What they are willing to accept based on adequate information and evaluation of their personal goal values and beliefs It is the primary intent of the medical intervention that must be clarified If administering enough morphine to control pain causes the patient to become more somnolent and unable to interact with family and friends it is the patient who must decide if the primary intent that of relieving pain is more important than the unintended effect of somnolence The ethical concern exists only When the primary intent is to cause death as in requests for physicianassisted suicide Uncomfortable physical effects of the dying process can be adequately managed Without causing death In addition options for addressing the psychological comfort of the patient should include such interventions as offering spiritual counseling utilizing complementary coping tools of music and massage providing privacy and supporting loved ones In providing comfort care interventions several actions are indicated Assess the patient s perception of What comfort care means Remind the patient that choosing comfort care measures does not mean giving up or not providing potentially therapeutic medical treatment Comfort care measures can and should be offered and provided at any stage of the patient s illness Provide information regarding the risks and benefits of medications available to control the unwanted symptoms of dying In essence provide informed consent related to the intended and unintended consequences of measures to provide comfort Assess patients goals related to how they Want to experience the dying process Develop clinical practice guidelines on comfort care that include physician order templates and standards of practice on physiological and psychological interventions for comfort care Chapter 416 2007 Gundersen Lutheran Medical Foundation Inc Chapter 4 Exercises 1 De ne lifesustaining treatment 2 What are the three categories of endoflife treatment choices 3 You need to determine a patient s Wishes regarding CPR Describe how you would begin the discussion and What information you would give regarding benefit and burdens of CPR 2007 Gundersen Lutheran Medical Foundation Inc Chapter 417 Chapter 4 FURTHER READING Berger J T Gorski M amp Cohen T 2006 Advance health planning and treatment preferences among recipients of implantable cardioverter defibrillators An exploratory study Journal of Clinical Ethics 171 7278 Bernat J L amp Beresford H R 2006 The controversy over artificial hydration and nutrition Neurology 6611 16181619 Biedrzycki B A 2005 Arti cial nutrition and hydration at the end of life Whose decision is it ONS News Oncology Nursing Society 2012 8 Briggs L A Kirchhoff K T Hammes B J Song M K amp Colvin E R 2004 Patientcentered advance care planning in special patient populations A pilot study Journal of Professional Nursing 201 4758 Casarett D Kapo J amp Caplan A 2005 Appropriate use of artificial nutrition and hydration fundamental principles and recommendations New England Journal of Medicine 35324 26072612 Cervo F A Bryan L amp Farber S 2006 To PEG or not to PEG A review of evidence for placing feeding tubes in advanced dementia and the decisionmaking process Geriatrics 616 3035 Coldicott Y G 2006 The difference between the use or not of resuscitative measures and do not attempt resuscitation requests Anaesthesia 61 1 1 1118 Coppola K M Ditto P H Danks J H amp Smucker W D 2001 Accuracy of primary care and hospitalbased physicians predictions of elderly outpatients treatment preferences with and without advance directives Archives of Internal Medicine 1613 431440 Curtis J R Engelberg R A Wenrich M D amp Au D H 2005 Communication about palliative care for patients with chronic obstructive pulmonary disease Journal of Palliative Care 213 157164 Curtis J R Patrick D L Caldwell E S amp Collier A C 2000 Why don t patients and physicians talk about endoflife care Barriers to communication for patients with acquired immunodeficiency syndrome and their primary care clinicians Archives of Internal Medicine 1 601 1 16901696 Dalal S amp Bruera E 2004 Dehydration in cancer patients To treat or not to treat The Journal of Supportive Oncology 26 467479 483 Davison S N amp Simpson C 2006 Hope and advance care planning in patients with end stage renal disease Qualitative interview study British Medical Journal 3337574 886 Chapter 418 2007 Gundersen Lutheran Medical Foundation Inc Ditto P H amp Hawkins N A 2005 Advance directives and cancer decision making near the end of life Health Psychology 244 Suppl S6370 Ditto P H Jacobson J A Smucker W D Danks J H amp Fagerlin A 2006 Context changes choices A prospective study of the effects of hospitalization on lifesustaining treatment preferences Medical Decision Making 264 313322 Ditto P H Smucker W D Danks J H Jacobson J A Houts R M Fagerlin A et al 2003 Stability of older adults preferences for lifesustaining medical treatment Health Psychology 226 605615 Epstein R M Alper B S amp Quill T E 2004 Communicating evidence for participatory decision making JA14A39 The Journal of the American Medical Association 291 19 23592366 Fins J J Miller F G Acres C A Bacchetta M D Huzzard L L amp Rapkin B D 1999 Endoflife decisionmaking in the hospital Current practice and future prospects Journal of Pain amp Symptom Management 1 71 615 Fischer G S Alpert H R Stoeckle J D amp Emanuel L L 1997 Can goals of care be used to predict intervention preferences in an advance directive Archives of Internal Medicine 1577 801807 Fischer G S Arnold R M amp Tulsky J A 2000 Talking to the older adult about advance directives Clinics in Geriatric Medicine 162 239254 Fischer G S Tulsky J A Rose M R Siminoff L A amp Arnold R M 1998 Patient knowledge and physician predictions of treatment preferences after discussion of advance directives Journal of General Internal Medicine 137 447454 Frank C Heyland D K Chen B Farquhar D Myers K amp Iwaasa K 2003 Determining resuscitation preferences of elderly inpatients A review of the literature CAMJ39 Canadian Medical Association Journal 1698 795799 Gillick M R 2006 The use of advance care planning to guide decisions about artificial nutrition and hydration Nutrition in Clinical Practice 21 2 126133 Goldstein N E amp Lynn J 2006 Trajectory of endstage heart failure The in uence of technology and implications for policy change Perspectives in Biology amp Medicine 491 1018 Guarisco K K 2004 Managing donotresuscitate orders in the perianesthesia period Journal of PeriAnesthesia Nursing 195 300307 Hawkins N A Ditto P H Danks J H amp Smucker W D 2005 Micromanaging death Process preferences values and goals in endoflife medical decision making Gerontologist 451 107117 Heyland D K Frank C Groll D Pichora D Dodek P Rocker G et al 2006 Understanding cardiopulmonary resuscitation decision making Perspectives of seriously ill hospitalized patients and family members Chest 1302 419428 2007 Gundersen Lutheran Medical Foundation Inc Chapter 419 Houts R M Smucker W D Jacobson J A Ditto P H amp Danks J H 2002 Predicting elderly outpatients lifesustaining treatment preferences over time The majority rules Medical Decision Making 221 3952 Kelley C G Lipson A R Daly B J amp Douglas S L 2006 Use of advance directives in the chronically critically ill JONA s Healthcare Law Ethics amp Regulation 82 4247 Levinsky N G amp Mesler D E 1994 Measuring managing and improving the quality of endstage renal disease care American Journal of Kidney Diseases 242 235246 Lilly C M De Meo D L Sonna L A Haley K J Massaro A F Wallace R F et al 2000 An intensive communication intervention for the critically ill American Journal of Medicine 1096 469475 Lockhart L K Bookwala J Fagerlin A Coppola K M Ditto P H Danks J H et al 2001 Older adults attitudes toward death Links to perceptions of health and concerns about endoflife issues Omega Journal of Death amp Dying 434 331 347 Lorenz K A Lynn J Dy S Wilkinson A Mularski R A Shugarman L R et al 2006 Quality measures for symptoms and advance care planning in cancer A systematic review Journal of Clinical Oncology 2430 49334938 Lunney J R Lynn J Foley D J Lipson S amp Guralnik J M 2003 Patterns of functional decline at the end of life JAJWA The Journal of the American Medical Association 28918 23872392 Lynn J 2005 Deactivating implantable cardioverter defibrillators Annals of Internal Medicine 1439 691 Lynn J 2005 Living long in fragile health The new demographics shape end of life care Hastings Center Report Spec No S14S18 Lynn J amp Goldstein N E 2003 Advance care planning for fatal chronic illness Avoiding commonplace errors and unwarranted suffering Annals of Internal Medicine I3810 812818 McMahon M M Hurley D L Kamath P S amp Mueller P S 2005 Medical and ethical aspects of longterm enteral tube feeding Mayo Clinic Proceedings 8011 14611476 McQuoidMason D 2005 Pacemakers and endoflife decisions South African Medical Journal SuidAfrikaanse T ydskrif Vir Geneeskunde 958 566 Peberdy M A Kaye W Ornato J P Larkin G L Nadkarni V Mancini M E et al 2003 Cardiopulmonary resuscitation of adults in the hospital A report of 14720 cardiac arrests from the National Registry of Cardiopulmonary Resuscitation Resuscitation 583 297308 Chapter 420 2007 Gundersen Lutheran Medical Foundation Inc Quill T E Dresser R amp Brock D W 1997 The rule of double effect a critique of its role in endoflife decision making New England Journal of Medicine 33724 17681771 Quill T E amp Townsend P 1991 Bad news Delivery dialogue and dilemmas Archives of Internal Medicine 1513 463468 Rhymes J A McCullough L B Luchi R J Teasdale T A amp Wilson N 2000 Withdrawing very lowburden interventions in chronically ill patients JAJWA The Journal of the American Medical Association 2838 10611063 Singer P A Martin D K Lavery J V Thiel E C Kelner M amp Mendelssohn D C 1998 Reconceptualizing advance care planning from the patient s perspective Archives of Internal Medicine 1588 879884 Sulmasy D P Sood J R amp Ury W A 2004 The quality of care plans for patients with donotresuscitate orders Archives of Internal Medicine 1 6414 1573 1578 Teno J M Fisher E Hamel M B Wu A W Murphy D J Wenger N S et al 2000 Decisionmaking and outcomes of prolonged ICU stays in seriously ill patients Journal of the American Geriatrics Society 485 Suppl S70S74 Thorevska N Tilluckdharry L Tickoo S Havasi A AmoatengAdjepong Y amp Manthous C A 2005 Patients understanding of advance directives and cardiopulmonary resuscitation Journal of Critical Care 201 2634 Vandrevala T Hampson S E Daly T Arber S amp Thomas H 2006 Dilemmas in decisionmaking about resuscitation a focus group study of older people Social Science amp Medicine 627 15791593 Weeks J C Cook E F O Day S J Peterson L M Wenger N Reding D et al 1998 Relationship between cancer patients predictions of prognosis and their treatment preferences 122832203 JAJWA The Journal of the American Medical Association 27921 17091714 2007 Gundersen Lutheran Medical Foundation Inc Chapter 421 Chapter 422 2007 Gundersen Lutheran Medical Foundation Inc Chapter 5 Advance Care Planning Skills with Adults Likely to Die in the Next 12 Months or Adults Living in LongTerm Care Respecting Ch0ices Chapter 5 Advance Care Planning Skills with Adults Likely to Die in the Next 12 Months or Adults Living in LongTerm Care When a person with an incurable illness reaches a point where death in the next 12 months would not be surprising a more focused approach to advance care planning is necessary This focused approach is also necessary for persons residing in longterm care facilities for the rest of their lives who are at high risk for sudden yet anticipated complications due to illness or frailty A wide range of medical and nonmedical situations must be discussed in a timely manner to allow adequate time for re ection on goals values and beliefs as well as the development of a written communication plan that can be integrated into the organization or community healthcare system Converting plans and preferences into medical orders is typically very important in order for a person s healthcare preferences to be honored The avoidance of comprehensive advance care planning discussions with people living in longterm care and their families and with those who are likely to die in the next year has several important consequences These adults and their healthcare agents or families may be robbed of the opportunity to make informed decisions and express their goals values and beliefs Without specific plans in place these individuals may receive unwanted care and experience undue suffering Basic advance care planning will typically not be adequate or specific enough to guide medical decision making in an acute crisis This chapter will describe the advance care planning facilitation interview skills for adults whose death in the next 12 months would not be surprising or those living in longterm care provide specific information on the living well interview questions and conclude by describing the nationally recognized system for converting preferences into medical orders the Physician Orders for Life Sustaining Treatment POLST form Since many persons living in longterm care may also lack decisionmaking capacity these advance care planning discussions may need to occur with selected healthcare agents court appointed guardians and or other loved ones Interview Skills Note These interview skills may be used to guide discussion with a healthcare agent or with other family or loved ones when the individual has lost decisionmaking capacity 1 Assess motivation knowledge and beliefs Address any barriers that may exist to the planning process 2007 Gundersen Lutheran Medical Foundation Inc Chapter 51 2 Explore understanding of health conditions Identify gaps in understanding and clarify information as appropriate Provide information as appropriate Develop a list of questions and involve others as necessary 3 Explore experiences such as when decisions about lifesustaining treatments were made by or for family or friends who became seriously ill or the meaning of their own recent hospitalizations or exacerbations of illness 4 Explore the concept of living well The objective of this exploration is to help people verbalize What is important and What gives their lives meaning This is a type of quality oflife assessment that will assist the individual in setting goals and establishing medical and nonmedical treatment priorities A brief history of the development of the living Well questions is included in this chapter There are three questions included in the living Well interview What activities or experiences are most important for you to live Well Or What gives your life meaning What fears or worries do you have about your illness or medical care Or What needs or services would you like to discuss What sustains you when you face serious challenges in life Or Do you have religious or spiritual beliefs that are important to you 5 Explore understanding of potential complications and related healthcare decisions This may require helping individuals to understand the highrisk nature of their situations and encouraging them to express their preferences on a Wide range of medical and non medical options While it is obvious that a person s preference concerning CPR must be determined it is critical to make plans to determine preferences about several other issues in a timely manner as Well such as use of antibiotics hospitalization for lifeprolonging measures artificial nutrition and hydration withdrawal of current medications treatments etc that no longer match the patient s goals and values comfort care including medical and nonmedical options Chapter 52 2007 Gundersen Lutheran Medical Foundation Inc Sample script As you know you have an illness that makes it dif cult to predict when a complication may occur and decisions may have to be made on your behalf Do you know what situations may occur and what decisions may need to be made Provide information if appropriate There are several decisions we encourage you to start thinking about We want you to learn more about these decisions and have time to think about your goals values and beliefs These include decisions about your preferences concerning arti cial nutrition and hydration use of antibiotics hospitalization and comfort care options 6 Develop a list of questions or concerns and involve others as necessary You have identi ed some questions and concerns that I have written down I suggest that we involve others who can address your concerns and provide the information or support you need 7 Explore people s perspective of comfort care Determine the specifics of what comfort care means to patients and under what set of criteria they want their symptoms controlled despite potential unintentional consequences The Living Well Interview Questions In La Crosse the structured living well interview was initiated as a pilot project to explore the impact of this type of planning The result was a very positive response from patients and an encouraging set of outcomes Structured interviews were conducted with 51 patients with metastatic cancer in most cases many months before death In this group 95 of patients felt that the discussion was meaningful Only a few patients who were approached refused to participate When asked how the interview was helpful 52 said it improved communication with either their families or physicians 38 said it helped them emotionally 30 said it helped them identify resources 18 felt better that someone cared and 13 said it helped them set goals In the 3 months that followed the structured interviews only 4 who died had not received palliative services and after 1 year the median length of hospice admission was 42 days for those in the pilot compared with 20 days for other patients admitted to hospice during the same time On a casebycase analysis these structured interviews made the last months of life more meaningful for those who participated For example it helped one father find a way to tell his 2007 Gundersen Lutheran Medical Foundation Inc Chapter 53 cognitively impaired adult son that he was dying It helped a mother get more coordinated services so she could get on the oor and play with her 3yearold child It helped a woman receive more aggressive medical treatment to meet a shortterm goal It revealed that a patient did not want weekly monitoring of laboratory values so that he could spend more time with his family It also helped an incompetent patient get admitted to hospice when others still wanted to pursue active treatment The original pilot of the living well interview included 10 questions In an effort to study the value and importance of each of these questions Carolyn Schwartz ScD and Inga Lennes along with others from Gundersen Lutheran conducted a qualitative analysis of all the responses to the 10 questions This study determined that 3 primary questions and 3 backupprobe questions yielded information that minimized misinformation sampled all 4 content areas led to discussions of importance for good planning and decision making Schwartz 2003 The 3 primary questions and the 3 backupprobe questions have been integrated into the Respecting Choices advance care planning interview skills There is still a great deal to be learned about these types of planning discussions and the success of this pilot in La Crosse supports the inclusion of the structured interview as an important part of advance care planning for adults whose death in the next 12 months would not be surprising and for those living in longterm care facilities By listening to the patients goals for living well the advance care planning facilitator can help them to re ect on these goals and weigh them against the potential burdens of lifesustaining treatment choices It can improve care in the last several months of life not just in the last days or hours as is typically true for more standard advance care planning which focuses more on medical treatments at the end of life Developing a Written Communication Plan Once these individuals are helped to make endoflife decisions that represent their goals values and beliefs it becomes necessary to examine or create the systems to ensure these plans will be honored For this population it is usually necessary to convert preferences into specific medical orders so preferences can be followed when a medical crisis arises Because of this it is prudent to create a document that communicates a person s preferences and will be transferred with the person if the need arose eg emergency department home hospice facility Respecting Choices recommends the use of the Physician Orders for LifeSustaining Treatment POLST form as an effective communication system for these individuals See appendix I for a copy of the POLST form and appendix II for Guidelines in Implementing the POLST form Chapter 54 2007 Gundersen Lutheran Medical Foundation Inc Developed in Oregon in 1990 the POLST form is intended to provide a method of communicating a patient s treatment preferences through medical orders that would be honored in outoffacility environments such as at home or during transfer from a nursing home or extendedcare facility The form provides directives for care regarding resuscitation medical interventions such as intubation and comfort care and administration of antibiotics and artificial feeding It is especially useful for people whose death in the next 12 months would not be surprising or those living in longterm care facilities In a 1997 study on the implementation of the POLST system the Oregon task force found that 55 of 180 patients who had completed the POLST form experienced an event requiring its implementation No person who had specified DNR was resuscitated evidence that preestablished preferences were honored Additionally almost 63 of those in nursing homes had a prescription for opioids at the time of death which is evidence of the provision of comfort care Communicating a DNR order by use of a statesanctioned DNR bracelet has been problematic in La Crosse Wisconsin In 1997 the State of Wisconsin implemented a law that allowed qualified adults to wear DNR bracelets These bracelets had to be obtained by patients from their physicians The bracelets were problematic because they were designed to be permanently affixed to the patient s wrist This method of communicating a DNR order to emergency personnel was thought to be appealing because the order would always be with the person However we have found that patients and physicians do not find this method of communicating the DNR order acceptable for many reasons The bracelet makes the patient s choice public it is unattractive and uncomfortable it is difficult to maintain for people with dementia and it becomes damaged with age and difficult to read In addition healthcare providers working in longterm care and home hospices disliked the Wisconsin law since it required them to attach bracelets to people when it seemed unnecessary and burdensome In response to this situation the medical centers in La Crosse agreed to adopt the POLST Paradigm as a standard of care A community agreement was reached among the healthcare systems longterm care providers and emergency services organizations Protocols were drafted so that emergency personnel could follow physician orders communicated by either the Wisconsin DNR bracelet or the community POLST Longterm care facilities agreed to use the POLST form or bracelet This practice has worked very well in La Crosse Most people who have outofhospital DNR orders use the POLST form are typically frail or at high risk of dying in the next 12 months Since most of these individuals are in longterm care home hospice or home healthcare organizations there is a system to insure the POLST form is available to emergency personnel during necessary transport For the few individuals who are able to move independently and also decide not to have CPR attempted the DNR bracelet provides the best protection from unwanted resuscitation outside of the hospital 2007 Gundersen Lutheran Medical Foundation Inc Chapter 55 Completion of the POLST form should be accompanied by a facilitated advance care planning discussion If capable the individual should also consider completing a Power of Attorney for Healthcare document The POLST form is intended to be a communication tool when the patient s preferences need to be converted into physician s orders particularly in case of acute crisis Other medical treatment decisions may be necessary making it important to have a legally appointed surrogate who understands the person s goals values and preferences While use of the POLST form originated in Oregon it is now used statewide in four states and in regions of five other states It is under consideration for implementation in more than 10 additional states While the programs in each geographic area have different names POLST MOST POST to be a POLST Paradigm Program certain core components are required Core Requirement Checklist 1 The form constitutes a set of medical orders 2 The process includes training of healthcare professionals across the continuum of care about the goals of the program as well as the creation and use of the form 3 Use of the form is recommended for persons who have advanced chronic progressive illness those who might die in the next year or anyone wishing to further define their preferences of care 4 The form requires a valid Physician Nurse Practitioner or Physician Assistant accepted depending upon program signature and date of signature 5 The form may be used either to limit medical interventions or to clarify a request for all medically indicated treatments including resuscitation 6 The form provides explicit direction about resuscitation status if the patient is pulseless and apneic 7 The form also includes directions about other types of intervention that the patient may or may not want For example decisions about transport ICU care antibiotics artificial nutrition etc 8 The form accompanies the patient and is transferable and applicable across care settings ie longterm care EMS hospital 9 The form is uniquely identifiable standardized and of uniform color within a stateregion 10 There is a plan for ongoing monitoring of the implementation of the program Chapter 56 2007 Gundersen Lutheran Medical Foundation Inc Optional components of a POST Paradigm Program may be handled in various Ways depending upon state law and local preferences Optional Elements 1 Ideally a surrogate should be able to make decisions about treatment choices for a patient without decisionmaking capacity but states have varying laws regarding surrogates and decision making 2 Some states may recognize the form as the only outofhospital DNR form in others there may be other means of DNR identification as Well Use of the form may be voluntary 3 Ideally states would accept forms completed in other states reciprocity In summary the POLST system is an effective mechanism to convert people s preferences into Written orders that can be communicated throughout the healthcare continuum e g longterm care facilities emergency departments home hospice Without such a system of communication it remains unlikely that people s preferences for lifesustaining treatment would be available upon transfer to another healthcare facility putting them at risk to receive care inconsistent with their preferences 2007 Gundersen Lutheran Medical Foundation Inc Chapter 57 Chapter 5 Exercises 1 Describe three important healthcare decisions that need to be discussed with a frail elderly individuals admitted to a longterm care facility and their healthcare agent or other loved ones 2 How do the living well structured interview questions assist in discussions regarding end oflife treatment decisions 3 Describe how the Physician Orders for LifeSustaining Treatment POLST form assists in communicating an individual s preferences for endoflife care Chapter 58 2007 Gundersen Lutheran Medical Foundation Inc Appendix I The Physician Orders for LifeSustaining Treatment POLST Form The La Crosse Version 2007 Gundersen Lutheran Medical Foundation Inc Chapter 59 Chapter 510 2007 Gundersen Lutheran Medical Foundation Inc 39G339 hIVHOSIG HO G3HH3ISNVhIJ NHHM LN3GIS3HJN3IJVd ANVdIIOOOV JSnII IIhIOI 39IVNI39 IHO for LifeSustaining Treatment POLST This is a Physician Order Sheet It is based on patientresident medical condition and wishes It summarizes any Advance Directive ANY SECTION NOT COMPLETED INDICATES FULL TREATMENT FOR THAT SECTION WHEN THE NEED OCCURS FIRST FOLLOW THESE ORDERS THEN CONTACT PHYSICIAN Last Name of Patient Resident Physician Orders First Name Middle Initial of Patient Resident Patient Resident Date of Birth Gender M F Clinic Clinic Section Treatment options when the patientresident is not breathing and has no pulse Chec one II esuscitate II Q0 Not attempt or continue any esuscitation DNR Box Only Section Treatment options when the PatientResident has pulse andlg is breathing B II Comfort Measures Only The patientresident is treated with dignity respect and kept clean warm and dry Reasonable measures are made to offer food and fluids by mouth and attention is paid to hygiene 39Medication positioning wound care and other measures are used to relieve pain and suffering Oxygen suction and manual treatment of airway obstruction may be used as needed for comfort These measures check are to be used where the patientresident lives If comfort measures fail contact physician 2 For hospitalization transfer to My II Limited Additional Interventions Includes care above May include cardiac monitor and oralIV medications Transfer to hospital if indicated but no endotracheal intubation or long term life support mea sures Usually no intensive care II Aggressive Treatment Includes care above plus endotracheal intubation advanced airway and cardioversionautomatic defibrillation 02 7ernsz 1cfans Section Antibiotics C II No antibiotics except if needed for comfort eg dental infection Check El No Invasive IMIV antibiotics 393 i quot II Aggressive Treatment 02 7ernsz 1cfans Artificially Administered Fluids and Nutrition Comfort measures are always provided 333 quot El No feeding tubeIV fluids II Defined trial period of feeding tubeIV fluids 0 f39 39fx El Long term feeding tubeIV fluids 0quot 02 7ernsz 1cfans Discussed with II PatientResident II Health Care Agent II Courtappointed Guardian Sm lon II Other specify Name of agentguardian Phone THE BASIS FOR THESE ORDERS IS Signature of PhysicianlNurse Practitioner mandatory sichariIII Name ty pe or print ORIGINAL FORM MUST ACCOMPANY PATIENTRESIDENT WHEN TRANSFERRED OR DISCHARGED 22333 R12O2 La Crosse Area Advanced Directive Task Force PACE April 2005 I39 ORIGINAL FORM MUST ACCOMPANY PATIENTRESIDENT WHEN TRANSFERRED OR DISCHARGED When This Form Should Be Reviewed As a medical order this form POLST should be reviewed periodically and if 0 The patientresident is transferred from one care setting or care level to another or 0 There is a substantial change in patientresident health status or O The patientresident treatment preferences change How to Complete the Form Review L Review Sections A through F 2 Complete Section G If this form is to be voided write VOID in large letters on the front of the form After voiding form a new form may be completed t no new form 19 competeoj tu treatment and resusctat on may be pro Ideaf Section F PatientResident Parent of Minor Child Preferences as a Guide for this POLST Form Advance Directive Courtappointed Guardian Close to death Extraordinary suffering Improved condition III YES III YES I have given significant thought to lifesustaining treatment I expressed my preferences to my physician andor health care providers This document reflects my treatment preferences The following have further information regarding my preferences ENo ENo Please review these orders if there is substantial change in my health status such as Advanced progressive illness Permanent unconsciousness Signature of PatientResident Parent of Minor or GuardianHealth Care Representative optional Signature of Person Preparing Form Preparer Name print Date Prepared Section G Review of this POLST Form Date Reviewer Location of Review Outcome of Review El No change El FORM VOIDED new form completed El FORM VOIDED no new form El No change El FORM VOIDED new form completed El FORM VOIDED no new form El No change El FORM VOIDED new form completed El FORM VOIDED no new form El No change El FORM VOIDED new form completed El FORM VOIDED no new form La Crosse Area Advanced Directive Task Force PACE April 2005 Appendix II Guidelines for Implementing the Physician Orders for Life Sustaining Treatment Document La Crosse Template Overview The Physician Orders for LifeSustaining Treatment POLST document should be completed by the attending physician after discussion with the patientresident or surrogate decision maker regarding patient preferences The document may be completed by other healthcare professionals under the direction of the attending physician or nurse practitioner The attending physician or nurse practitioner must sign the form and assumes full responsibility for the accuracy of the recorded information The POLST has seven sections A through G One side of the document is the Physician Orders for LifeSustaining Treatment sections A through E The other side of the form tells you how to change the physician orders It has the PatientResident Preferences as a Guide for Physician Orders for LifeSustaining Treatment section F and Review of Physician Orders for LifeSustaining Treatment section G The POLST is printed on mediumweight yellow paper to ensure an easily recognizable form that is standard from one care setting to another Use of the POLST is voluntary The form is copyrighted and should not be reproduced or modified by individual facilities Title and PatientResident Identification The POLST provides documentation of patientresident preferences and provides life sustaining treatment orders that re ect those values In healthcare facilities the POLST should be the first document in the clinical record In noninstitutional settings the form should be in a prominent location Caregivers need to know where the POLST is kept and be able to present it to emergency personnel upon arrival The original form should accompany the patientresident upon transfer from one setting to another SectionbySection Review of the POLST Form Physician Orders This section lists four different medical treatments or services including section A Resuscitation section B Emergency Medical Services EMS section C Antibiotics and section D Arti cially Administered Fluids and Nutrition Section E records the basis for the physician orders If the patientresident requires treatment the caregiver should first institute any emergency treatment orders recorded on the POLST then contact the attending physician or nurse practitioner Any order section that is not completed indicates that full treatment should be provided 2007 Gundersen Lutheran Medical Foundation Inc Chapter 511 Section A Resuscitation The Resuscitation section refers only to the circumstance in which the patientresident is not breathing and has no pulse This section does not apply to any other medical circumstances For example this section does not apply to patientsresidents in respiratory distress because they are still breathing Likewise this section does not apply to patientsresidents who have irregular pulse and low blood pressure because they have a pulse For these situations the caregiver should refer to section B Emergency Medical Services EMS described below and follow the appropriate orders If the patientresident wants cardiopulmonary resuscitation CPR and CPR is ordered then the Resuscitate box is checked and full resuscitative measures should be carried out and 911 should be called If patients have indicated that they do not want CPR in the event of no breathing and no pulse then the Do Not Resuscitate DNR box is checked Patients should understand that comfort measures would always be provided and that no resuscitative efforts would be given Section B Emergency Medical Services EMS This section refers to emergency medical circumstances that are not covered in section A and was developed in accordance with EMS protocol If aggressive treatment by EMS is indicated and desired the Aggressive Treatment box is checked and 911 is called However if the patientresident and physician determine that some limitation is preferred then only one of the other boxes is checked Caregivers will first provide the level of EMS services ordered and then contact the attending physician or nurse practitioner Comfort care is always provided regardless of indicated level of EMS treatment Comfort Measures Only indicates a desire for only those interventions that enhance comfort In general the patientresident and physiciannurse practitioner would not want an EMS response unless necessary for patient comfort The patientresident would not expect to be transported to a hospital unless indicated later by the attending physiciannurse practitioner because acute care skills are needed to enhance comfort eg to treat intractable pain Oxygen suction and manual treatment of airway obstruction may be used as needed for comfort Limited Interventions includes comfort measures above and may include cardiac monitor and oralIV medications Transfer to a hospital if indicated but no endotracheal intubation or longterm life support measures Usually no intensive care Chapter 512 2007 Gundersen Lutheran Medical Foundation Inc Aggressive Treatment indicates all measures above plus endotracheal intubation advance airway and cardiovascularautomatic defibrillation If these measures fail chest compressions are not to be attempted Section C Antibiotics This section records the desired use of antibiotics If there is no limitation the attending physiciannurse practitioner checks the Aggressive Treatment box If limitation of antibiotics is desired either the No antibiotics except if needed for comfort or No invasive IMIV antibiotics box should be checked There is also space for further instruction on the use of antibiotics For example a patient may Want antibiotic treatment for a urinary tract infection but not pneumonia These types of specific limitations should be Written on the Other instructions line Section D Artificially Administered Fluids and Nutrition This section allows the physician or nurse practitioner to record patientresident instructions regarding artificially administered uids and nutrition for patients who cannot take uids by mouth If the patientresident Wants a longterm feeding tube of IV uids the Longterm feeding tubeIV uids box is checked If there are limitations ordered for artificially administered uids and nutrition either the No feeding tubeIV uids box or the Defined trial period of feeding tubeIV uids box is checked Other instructions may also be specified Section E Basis for Orders Upon completion of the physician orders the attending physician checks the box indicating with Whom the orders were discussed ie patientresident healthcare agent courtappointed guardian or other The attending physician then summarizes the basis for the orders in accordance with the medical indications and patientresident treatment preferences For example the physician might Write After thorough discussion with the patient and family and in keeping with the current advance directive the patient has indicated no desire for aggressive treatment The above orders re ect this discussion At the bottom of the page the physician or nurse practitioner must sign the form The physician or nurse practitioner then prints his or her name and the time and date the orders were Written If the physician or nurse practitioner does not sign the form it cannot be treated as a valid order and EMS personnel cannot limit EMS services The bottom of the form includes a reminder that the original form should accompany the patientresident When transferred or discharged It is very important that the form follow the 2007 Gundersen Lutheran Medical Foundation Inc Chapter 513 patient It allows the receiving facility to have the same information regarding the medical indication and patientresident preferences for lifesustaining treatment and increases the likelihood that these orders will be respected in the new care setting How to Change the POLST Document The other side of the form tells you how to change the POLST orders and when to review the order form Section F PatientResident Preferences as a Guide for POLST The patientresident has personal goals values and beliefs that may be expressed orally in writing as in an advance directive or by a surrogate healthcare agent or courtappointed guardian We encourage you to attach copies of advance directives or guardianship documents to the form The physician should carefully consider these individual preferences when completing and reviewing the lifesustaining treatment orders If the patient sresident s preferences or medical status change the POLST should be reevaluated The patientresident may sign this section indicating agreement with the orders but the signature is optional Some patientsresidents may not be able to sign the form If the form is prepared by someone other than the attending physician or nurse practitioner the preparer is encouraged to record his or her signature name and time and date of preparation Section G Review of Physician Orders for LifeSustaining Treatment This section records the review of POLST if patientresident preferences or medical status change The orders should also be reviewed by the attending physician or nurse practitioner or designee immediately after the patientresident is transferred from one care setting to another This review includes the date the reviewer s name and the location of the review The outcome of the review is also recorded by checking either the box indicating no change or one of the two boxes indicating the old form has been voided and a new form completed or not completed The reviewer may also wish to record why the form was voided With any change the document should be voided by drawing a diagonal line andor the word VOID across the front of the form After voiding the form a new form should be completed re ecting the new medical indications and treatment wishes of the patientresident A voided form may be destroyed only after clear documentation of the action in the patient sresident s advance directive education record or healthcare record Revoking the POLST A patient may orally revoke the POLST at any time Chapter 514 2007 Gundersen Lutheran Medical Foundation Inc Chapter 5 FURTHER READING Breitbart W 2003 Reframing hope Meaningcentered care for patients near the end of life Interview by Karen S Heller Journal of Palliative Medicine 66 979988 Clayton J M Butow P N amp Tattersall M H 2005 When and how to initiate discussion about prognosis and endoflife issues with terminally ill patients Journal of Pain amp Symptom Management 302 132144 Degenholtz H B Arnold R A Meisel A amp Lave J R 2002 Persistence of racial disparities in advance care plan documents among nursing home residents Journal of the American Geriatrics Society 502 378381 Ditto P H amp Hawkins N A 2005 Advance directives and cancer decision making near the end of life Health Psychology 244 Suppl S63S70 Gillick M Berkman S amp Cullen L 1999 A patientcentered approach to advance medical planning in the nursing home Journal of the American Geriatrics Society 472 227230 Happ M B Capezuti E Strumpf N E Wagner L Cunningham S Evans L et al 2002 Advance care planning and endoflife care for hospitalized nursing home residents Journal of the American Geriatrics Society 505 829835 Hawkins N A Ditto P H Danks J H amp Smucker W D 2005 Micromanaging death Process preferences values and goals in endoflife medical decision making Gerontologist 451 107117 Heyland DK Dodek P Rocker G Groll D Gafni A Pichora D Shortt S Tranmer J Lazar N Kutsogiannis J Lam M Canadian Researchers EndofLife NetworkCARENET 2006 What matters most in endoflife care Perceptions of seriously ill patients and their family members CAMJ39 Canadian Medical Association Journal 1745 627 633 Hickey D P Shriner C J amp Perry S E 2005 Patients initiation of advance care planning discussions with their family physician Family Medicine 3 78 536 Hickman S E Hammes B J Tolle S W amp Moss A H 2004 A viable alternative to traditional living wills Hastings Center Report 345 45 Kane R A Degenholtz H B amp Kane R L 1999 Adding values An experiment in systematic attention to values and preferences of community longterm care clients Journals of Gerontology Series BPsychological Sciences amp Social Sciences 542 S109S1 19 Kane R A Kling K C Bershadsky B Kane R L Giles K Degenholtz H B et al 2003 Quality of life measures for nursing home residents Journals of Gerontology Series ABiological Sciences amp Medical Sciences 583 240248 2007 Gundersen Lutheran Medical Foundation Inc Chapter 515 Lambert H C McColl M A Gilbert J Wong J Murray G amp Shortt S E 2005 Factors affecting longtermcare residents decisionmaking processes as they formulate advance directives Gerontologist 455 626633 Lorenz K A amp Lynn J 2004 Oregon s lessons for improving advance care planning Journal of the American Geriatrics Society 529 15741575 Lynn J 2001 Perspectives on care at the close of life Serving patients who may die soon and their families The role of hospice and other services JAJWI The Journal of the American Medical Association 2857 925932 Lynn J 2005 Living long in fragile health The new demographics shape end of life care Hastings Center Report Spec No S14S18 Lynn J amp Gregory C O 2003 Regulating hearts and minds The mismatch of law custom and resuscitation decisions Journal of the American Geriatrics Society 5I10 15021503 McAuley W J Buchanan R J Travis S S Wang S amp Kim M 2006 Recent trends in advance directives at nursing home admission and one year after admission Gerontologist 463 377381 McAuley W J amp Travis S S 2003 Advance care planning among residents in longterm care American Journal of Hospice amp Palliative Care 205 353359 Meeker M A amp Jezewski M A 2005 Family decision making at end of life Palliative amp Supportive Care 32 131142 Meyers J L Moore C McGrory A Sparr J amp Ahern M 2004 Physician orders for lifesustaining treatment form Honoring endoflife directives for nursing home residents Journal of Gerontological Nursing 309 3746 Mezey M D Mitty E L Bottrell M M Ramsey G C amp Fisher T 2000 Advance directives Older adults with dementia Clinics in Geriatric Medicine 162 255268 Mitchell S L Morris J N Park P S amp Fries B E 2004 Terminal care for persons with advanced dementia in the nursing home and home care settings Journal of Palliative Medicine 76 808816 Newton J P 2006 End of life decisions and care of the elderly Gerodontology 232 65 66 Quill T E 2000 Perspectives on care at the close of life Initiating endoflife discussions with seriously ill patients Addressing the elephant in the room JAJWA The Journal of the American Medical Association 28419 25022507 Schwartz C Lennes 1 Hammes B Lapham C Bottner W amp Ma Y 2003 Honing an advance care planning intervention using qualitative analysis The Living Well Interview Journal of Palliative Medicine 64 593603 SomogyiZalud E Zhong Z Hamel M B amp Lynn J 2002 The use of lifesustaining treatments in hospitalized persons aged 80 and older Journal of the American Geriatrics Society 505 930934 Chapter 516 2007 Gundersen Lutheran Medical Foundation Inc Tolle S W amp Tilden V P 2002 Changing endoflife planning The Oregon experience Journal of Palliative Medicine 52 311317 Zimring S D 2006 Health care decisionmaking capacity A legal perspective for long term care providers Journal of the American Medical Directors Association 75 322326 Zronek S Daly B amp Lee H O 1999 Elderly patients understanding of advance directives JONA s Healtlzcare Law Ethics amp Regulation 12 2328 2007 Gundersen Lutheran Medical Foundation Inc Chapter 517 Chapter 518 2007 Gundersen Lutheran Medical Foundation Inc Chapter 6 Making Advance Care Planning Work Organizational Issues and Educational Strategies Respecting Ch0ices Chapter 6 Making Advance Care Planning Work Organizational Issues and Educational Strategies In chapter 1 we described Respecting Choices as a comprehensive advance care planning program that advocates four key elements training healthcare professionals and others to skillfully facilitate advance care planning discussions developing community and organizational systems and practices to incorporate advance care planning into the routine of care designing effective patient and community advance care planning engagement materials and monitoring outcomes with continuous quality improvement methods A major focus of this manual has been the specific skills and knowledge involved in training health professionals and others to facilitate advance care planning discussions This final chapter will describe the three remaining elements necessary for a successful advance care planning program Respecting Choices has a separate manual devoted solely to organizational issues To learn more about this manual go to wwwrespectingchoicesorg Developing Community and Organizational Systems and Practices There are four key components in designing community and organizational advance care planning program leadership and commitment standard policies and practices defined advance care planning team roles and responsibilities and effective strategies to educate the team To demonstrate these key components we provide examples from the La Crosse experience 1 Leadership and Commitment The La Crosse experience demonstrates how one community achieved success through a combination of leadership commitment and implementation of the principles of organizational design One of the unique aspects of the advance care planning program in La Crosse is that it is a community program jointly developed by all the major healthcare systems in the area as directed by their CEOs These organizations agreed upon and implemented uniform practices staff training and education materials This collaboration provides uniformity that helps individuals and allows partnerships with other organizations such as churches educational institutions and libraries The La Crosse program planning committee adopted the following mission statement Decision making about lifesustaining medical treatment will be improved if all adults are better informed about the realities and possibilities of modern medicine assisted in making choices about future treatment should they become incapacitated and assisted in communicating their values feelings and choices to those who care most about them including health professionals who provide their care 2007 Gundersen Lutheran Medical Foundation Inc Chapter 61 To accomplish this mission the following objectives were developed All healthcare facilities within the community will have individuals who can inform and educate patients and their families about advance care planning It is the expectation that physicians especially in the outpatient setting talk with their patients about advance care planning routinely refer their primary patients to advance care planning facilitators and follow up with discussions as necessary The medical centers will develop a common educational program for advance care planning the primary goal of which is increased understanding of medical decision making of the role of patient goals values and beliefs and of the communication among family members A secondary goal of the program is to provide reliable information about alternative ways a patient might document goals values beliefs and preferences Only persons who have completed the advance care planning facilitator educational program will be authorized to provide advance care planning within the organizations While primarily for medical center employees and staff facilitator education is also available to community members such as clergy social workers home healthcare nurses attorneys and senior citizen advocates The medical centers shall maintain policies that delineate standards and guidelines for consistent application of advance care planning practices 2 Policies and Practices Related to Advance Care Planning The La Crosse Task Force agreed upon several key provisions to be included in advance care planning policies and procedures throughout the community A sample policy is included in appendix I of this chapter To summarize advance care planning policies and procedures should include the following provisions Capable adult patients may freely enter written advance directives without speci c limitation on the format This first provision allows the greatest freedom to patients and their physicians in recording preferences While most patients choose to use a formal written advance directive some prefer to simply discuss their preferences or values with a trusted physician and then have the physician record these preferences as a dictated note Such dictated notes typically deal with limitations on the use of CPR and intubation in patients with endstage diseases This openness to different types of documentation preferences allows physicians to add dictated comments to a patient s legal document patients to write letters or other informal ways of expressing preferences surrogates Chapter 62 2007 Gundersen Lutheran Medical Foundation Inc to make written plans when their loved ones have become incapable and exibility in addressing cultural barriers in documentation If the ethical basis of advance care planning is to express how to best care for someone we love and if the legal basis is to respect patient preferences and a capable adult s right to refuse any treatment it seems important not to interfere with the format of written expression of patient preferences While it is appropriate to recommend the completion of a Power of Attomey for Healthcare type document that meets statutory requirements such a document may not be the best option for some individuals Further this format might need other supporting documentation over time Written directives shall be reviewed by quali ed staff before they are entered or removed from patient charts This provision emphasizes the importance of ensuring that documents are thoroughly reviewed before entering or removing them from the medical record At Gundersen Lutheran staff qualified to enter or remove documents includes physicians physician assistants nurse practitioners trained advance care planning facilitators and medical record personnel When documents are entered or removed the designated individuals review them for a variety of factors including whether the request is from the patient if the document is completed correctly and if there are any concerns about the instructions It is not uncommon for 10 of the documents completed outside the organization to contain technical errors for example the patient forgot to sign the document a witness is missing or the witness is inappropriate At times patients may document a preference that is unlikely to be followed or is extremely unclear In such cases the patient or the patient s attomey can be contacted for clarification A standard location for advance directives shall be designated within the medical record and any document shall be clearly labeled with the patient s name the date entered and the person who entered it An organization should have a reliable standard place in the medical record to keep written advance directives in order to ensure that immediate retrieval is possible when treatment decisions must be made quickly Immediate access is also critical to a physician who may never have met the patient before and who likely would be unaware of the person s preferences When the Respecting Choices program began and medical records were physical charts the medical centers in La Crosse agreed that all advance directives would be 2007 Gundersen Lutheran Medical Foundation Inc Chapter 63 placed in green plastic sleeves to be located at the front of patient charts Visible even when misfiled in the medical record the sleeve is durable and portable It was easily moved from the patient chart to the hospital unit ip chart during hospitalizations thereby keeping the document at hand when it may be needed most Even though charts are not always immediately available in the emergency department the green sleeve was easily located once the chart arrived Upon admission to the hospital the green sleeve was transferred from the patient s chart to the patient s nursing unit chart and then returned to the medical record upon discharge from the hospital In this way the patient advance directive was always easily accessible to any physician or nurse caring for the hospitalized patient As medical records evolve to an electronic format new challenges and opportunities exist Gundersen Lutheran has invested over two years in the development and design of an ACP application that is a component of a larger electronic medical record In designing this ACP application the goal was to capture all the critical implementation variables into a single electronic application system Finding this application in the electronic record is simple There is a clear link on the first page the patient summary page that appears when you access the patient s electronic chart Once in the advance care planning application it is possible to determine whether the patient has any type of written advance directive and if so to view this document as a PDF file If the patient has a power of attorney for healthcare the names of healthcare agents and their contact information are immediately in view as is any preference about CPR In addition the application features a computerdirected system to interview a patient about advance care planning needs to retrieve dictated notes involving advance care planning to make referrals to advance care planning facilitators and to allow facilitators and others to record notes about advance care planning education or interactions This application is available to all Gundersen health professionals in all Gundersen care settings making it a powerful way to communicate patient preferences and ACP discussions Thus if planning were started at Gundersen Lutheran Medical Center when a patient was hospitalized a facilitator at a regional clinic could access this information through our integrated electronic medical record system when a patient returns for a referred visit A patient s written directive will be honored or the patient s care transferred to a physician who will honor it unless I there is clear evidence that the directive is a forgery 2 the patient had requested that it be revoked 3 the patient was incapable when the document was signed or 4 the document asks the facility to do something illegal under state law Chapter 64 2007 Gundersen Lutheran Medical Foundation Inc The La Crosse Task Force wanted a strong organizational commitment to honor the authentic preferences of a patient While individual staff conscience was recognized and accepted the organization took a stand on its willingness to follow the preferences of adult patients Unless the organization has strong and clear evidence that the document was revoked is a forgery was not created by a decisional adult or asks the organization to violate state law the preferences will be followed The organization has a responsibility to help find a physician to follow a valid written advance directive if a particular physician refuses Guidelines will be adopted to ensure that when patients transfer from one institution to another copies of their advance directives are transferred as well To foster respect for honoring patient preferences and the community support of advance care planning it is important to establish a mechanism to transfer documents when patients are moved to other organizations for healthcare This ensures that patient preferences will be known It is also a courtesy to other organizations which also must ask patients if they have written advance directives In the La Crosse community when patients are transferred from the hospital discharge planners are responsible for identifying any written advance directives in patient records and for making copies of these documents to include in the packets of patient information provided to the admitting organizations All adult patients with whom advance care education or planning has been initiated will have advance care planning records put in their charts Since advance care planning discussions take place over time and with different staff it is important that a documentation system for these discussions ie advance care planning record be created for use by physicians nurses and advance care planning facilitators This advance care planning record documents both the advance care planning process and any written advance directives that have been developed It documents the educational materials provided issues discussed and who was involved Summaries of ACP discussions and patient reactions are documented as well This type of documentation is useful because it provides continuity between advance care planning sessions and a mechanism whereby the various staff facilitating this planning can communicate The information in the advance care planning record can also be useful in interpreting any written preferences provided by the patient Physicians and other health professionals must review advance directives and convert preferences into medical orders when appropriate 2007 Gundersen Lutheran Medical Foundation Inc Chapter 65 Ultimately advance directives have little significance if the preferences of the patient are not incorporated into care plans and into medical orders that re ect specific patient preferences and guide patient care This is especially important because the vast majority of people will die as a patient in some type of healthcare organization in which medical orders guide care and treatment In La Crosse when a patient is admitted to the hospital physicians are expected to review the written advance directive and write appropriate orders Ignoring this responsibility likely would prompt an ethics consult to review the situation When patients are discharged or simply remain in a community setting physicians have the option of using the POLST form to convert patient preferences into medical orders 3 Advance Care Planning Team Roles and Responsibilities Responsibility for understanding the importance of advance care planning and knowing the appropriate resources for patients and their families ideally rests with multiple health professionals While different team member roles carry with them different responsibilities for advance care planning from initiating advance care planning discussions to simply providing educational information the involvement of all professionals at some level will increase the opportunity for success The Respecting Choices program accepts that persons other than physicians will engage in discussing endoflife issues This approach does not mean that physicians are being left out or have a minor role to play in advance care planning facilitation and discussion On the contrary it encourages health professionals to work as a team taking advantage of each other s strengths While many organizations choose to designate staff to play instrumental roles for advance care planning delineating specific responsibilities for all direct caregivers is critical to ensuring consistency and accountability throughout the healthcare system Defining team member roles and responsibilities also allows for development of a clearer curriculum While this program takes the approach that there is strength in promoting education and basic competency in advance care planning among many healthcare roles it provides more detailed information to advance care planning facilitators physicians and nurses Advance Care Planning Facilitator Role and Responsibility Certified advance care planning facilitators come from many backgrounds medicine nursing social work pastoral care law community churches and all types of volunteer organizations Facilitators use the education and skills provided in the Respecting Choices program in many ways depending on their experience education background interest and role within the organization It is critically important to identify the roles needed within an organization and community and to then determine who is best qualified or able to fill these roles Chapter 66 2007 Gundersen Lutheran Medical Foundation Inc At a minimum advance care planning facilitators not only assist individuals in determining their preferences for future medical care but they also educate other health professionals Advance care planning facilitators also may assume any or all of the following roles and responsibilities provide community education both formally and informally coordinate advance care planning activities within an organization or community assist with the development and implementation of organizational systems that support advance care planning objectives provide emotional support to patientsfamilies struggling with making endof life decisions conduct performance improvement activities to continually evaluate quality outcomes related to advance care planning It would be a mistake to believe that everyone who attends an advance care planning facilitator s education program will use the preparation in the same way To ensure that the resources necessary to address all aspects of advance care planning are in place organizational leaders must define areas of responsibility and designate quali ed people to fill them As an example of the necessity for a team approach for advance care planning facilitators consider the efforts required to engage adults in advance care planning discussions before admission to the hospital In the La Crosse area when patients are scheduled for elective surgery or some other procedure surgeons associate staff or nurses are asked to provide patients with advance care planning information during their preadmission visits If a patient requests assistance with these issues staff must know who to contact for consultation It is helpful to have a centralized advance care planning facilitator to call An intake sheet communicates the need for consultation and relevant information See appendix II at the end of this chapter Physician Role and Responsibility Some might argue that ideally physicians would be completely responsible for advance care planning discussions and there are many reasons to support this position however there are many obstacles to making it work in the real world First many adults see more than one physician but physicians generally will engage in advance care planning discussions with only those patients with whom they have developed a close professional relationship Second many physicians do not want to do this type of facilitation or do not feel they can do a particularly good job of it Finally since physician time is at a premium in most settings advance care planning discussions may not be a priority 2007 Gundersen Lutheran Medical Foundation Inc Chapter 67 A team approach to advance care planning facilitation is probably a more realistic approach For example physicians might initiate discussion and provide information related to the patient s medical condition These discussions can motivate patients to undertake endoflife treatment planning as well as help them make final decisions based on health condition and treatment options But between these beginning and ending conversations patients often need help with basic information values clarification discussions with loved ones and documentation of preferences While these activities can certainly be carried out by physicians they can also be performed by other adequately prepared facilitators The team approach allows for a partnership between professionals who develop a good understanding of each other s role and establish effective communication mechanisms In many organizations it has been difficult to get physicians to support the team concept in part because their focus often is solely on completing the legal document Thus physicians may view advance care planning as a premature intervention for their patient unless they understand that effective advance care planning is a process that ideally the many decisions involved in completing the legal document are made only after patients have had time to re ect to discuss with loved ones and to consider endoflife treatment options Respecting Choices attempts to address these physician concerns by focusing efforts on improving patient understanding re ection and discussion of endoflife issues through a partnership between the health professionals providing care Physicians generally have fewer objections to these goals and realize that when legal documents are completed as part of this process patients and their loved ones have a reasonable understanding and agreement about what decisions will be made Finally the Making Choices patient educational materials through their common name and image on booklets and posters make it clear to patients that this advance care planning work is sponsored by the organization is part of good care and is not the individual bias of a physician Patients and their families can therefore benefit from multiple resources that are committed to improving care at the end of life Registered Nurse Role and Responsibility The role of the registered nurse RN in advance care planning has often been overlooked or avoided In implementing the Patient SelfDetermination Act many organizations assigned personnel in the business or registration department the task of asking the patient on admission if they had an advance directive In complying with the letter of the law opportunities for educating patients and initiating conversations were lost Indeed many organizations have since reassigned this responsibility to the admitting RN Unfortunately this reassignment often has not been accompanied by appropriate Chapter 68 2007 Gundersen Lutheran Medical Foundation Inc education regarding communication techniques or related interventions that may be required in gathering information from patients and their families While it is understood that RNs sometimes do not have time for indepth discussions and must refer patients to facilitators they can still do a lot to engage patients in advance care planning Opportunities exist to assess patient needs initiate conversations provide information listen make referrals provide emotional support assist with communicating patient preferences and participate in developing a plan of care consistent with the patient wishes A sample script and ow chart for an advance care planning admission assessment by an RN is included in appendix III Basic competency expectations related to advance care planning for nursing staff must be defined and educational efforts must be designed to support skill acquisition 4 Educating the Team In order for an advance care planning program to be successful a variety of healthcare professionals and others must invest in educational opportunities to enhance their knowledge and skills although the level of knowledge and skills required for various roles will vary Organizational leaders must invest time and resources in curriculum design and implementation and hold professionals accountable for acquiring the necessary skills Educating healthcare professionals requires understanding of their educational background as well as the development of creative methods to assist them in learning new skills Evaluations of the curricula within many professional schools in health related fields reveal the absence of content related to endoflife treatment and care Further many healthcare professionals complete formal education having never cared for a dying patient and the patient s family Exposure to the realities of the dying process and learning to address endoflife issues often occur on the job with little support or preparation It is no wonder that some healthcare professionals avoid these situations situations in which they feel uncomfortable or ill prepared situations that harbor the potential for con ict Studies of professionals knowledge of current national recommendations and guidelines related to endoflife issues and professionals responsibilities to effectively respond to these issues reveal not only a lack of awareness of ethical principles and legal rulings but also continued dissatisfaction and discomfort when placed in these situations One of the recommendations included in all national initiatives for improving endoflife care is to increase the clinical competence of healthcare professionals in endoflife issues Professional organizations and regulatory agencies are responding to this challenge with educational opportunities The Institute of Medicine has published necessary skills for professional preparation in endoflife care for medical students The American Association of Colleges of Nursing has distributed a list of recommended 2007 Gundersen Lutheran Medical Foundation Inc Chapter 69 competencies and curricular guidelines for endoflife nursing care in a document called Peaceful Death In 1999 this association collaborated with the City of Hope Medical Center to develop these recommendations into a curriculum called EndofLife Nursing Education Consortium ELNEC launching training programs in January 2001 The American Medical Association is provides national training conferences for physicians in a program entitled Educating Physicians on Endoflife Care These educational opportunities can foster an environment of shared responsibility and improved advance care planning outcomes Organizational leaders will need to develop strategies to address multiple questions in maintaining competency in advance care planning What are the basic competencies of advance care planning for the various healthcare roles and responsibilities What educational methods convey this information most effectively and in a cost effective and timeefficient manner Who will be responsible for evaluation of professional competency What opportunities will be offered to professionals for practicing new skills and gaining valuable experiences How will professionals be held accountable for their learning A variety of educational strategies may be effective in exposing a large group of professionals to the concepts of advance care planning including both didactic and experiential learning strategies Generally staff experience two types of education beneficial The first didactic is an informational approach that clarifies the differences between the process of advance care planning and the completion of an advance directive This type of education also focuses on regulatory and policy issues This information is often presented in a lecture a discussion or a combination of the two Other didactic options selfpaced modules computerassisted learning videotape reenactments provide more exibility for learners because they can be completed at the leamer s convenience The second type of education is experiential which requires participants to learn to discuss endoflife issues and to practice newly learned skills within the context of real patient and family situations Designing experiential lessons requires creativity And successfully facilitating such classes requires listening clarifying probing and problem solving skills as well as the ability to stimulate critical thinking to lead less structured discussions and to create a supportive and nonjudgmental environment Disseminating the concepts of advance care planning to a large group of stakeholders nurses social workers clergy volunteers is an educational challenge and a Chapter 610 2007 Gundersen Lutheran Medical Foundation Inc programmatic necessity All staff working in healthcare organizations must become knowledgeable about the basic concepts of advance care planning the policy and practices of advance care planning within their organization their individual roles and responsibilities how to identify an individual in need of advance care planning assistance and how to make a referral to a qualified facilitator Respecting Choices has developed the following online programs to meet the challenge of educating large and diverse groups Basic Concepts This halfhour training provides basic information about advance care planning for any employee working within a healthcare organization It clarifies the difference between advance care planning and advance directives and reviews the components of basic healthcare planning for adults Regulatory and policy issues are addressed and learners are encouraged to become familiar with the advance care planning procedures and resources within their organization or community RN Concepts role of the nurse As a followup to the basic concepts of advance care planning training this halfhour module specifically focuses on the role of the nurse It identifies advance care planning competencies and assists nurses in understanding their responsibilities in such areas as identifying a patient s need for medical information providing basic information on advance care planning advocating for the patient s expressed wishes and making referrals Respecting Choices Advance Care Planning Facilitation Online Course Part 1 Foundational Facilitation Skills This program consists of a series of three critical thinking modules designed for any individual who is interested in learning the skills to facilitate basic advance care planning discussions The content in this series includes skills at initiating conversations engaging people in the ACP process clarifying information exploring individual goals and values selecting a health care agent and making referrals Additionally the content includes the skills at assisting individuals in creating written plans that represents their preferences and can be communicated to others Module 1 Advance Care Planning and Advance Directives Understanding the Language Concepts and Tools Module 2 Facilitating Basic Advance Care Planning Discussions Module 3 Creating an Advance Directive Communicating the Plan Respecting Choices Advance Care Planning Facilitation Online Course Part 2 This program consists of a series of three critical thinking modules designed for healthcare professionals who want to enhance their advance care planning facilitation skills for patients with progressive illnesses and those who we may not be surprised if they died in the next 12 2007 Gundersen Lutheran Medical Foundation Inc Chapter 611 months The content in this series also helps learners to identify the skills necessary to address the multiple systems challenges required to implement an effective advance care planning program Module 4 Facilitating Advance Care Planning Discussions for adults with chronic progressive illness Module 5 Facilitating Advance Care Planning Discussions for adults who are expected to die in the next 12 months or for those living in longterm care facilities Module 6 Making Advance Care Planning Work Organizational Issues and Educational Strategies Patient and Community Education and Engagement The importance of advance care planning as an opportunity for patients and the community at large to become knowledgeable about endoflife issues aware of their values goals and beliefs and willing to make treatment choices must be emphasized However capturing the attention of this group regarding the importance of this issue and developing effective educational programs are challenges faced by advance care planning facilitators Educating patients and the community and motivating them to participate in advance care planning involves creating engaging materials and developing community partnerships The following suggestions for patient and community education are provided 1 Chapter 612 As discussed in chapter 3 it is important to develop educational materials that deliver consistent common and repetitive messages that can be utilized throughout the community To make these educational materials more effective the La Crosse program attempts to make them widely available Efforts have been made to work in partnership with a variety of organizations and other professionals using as many forms of dissemination as possible Displays Displays with handouts are placed in various settings Of particular success has been an installation near the main elevators in an ambulatory clinic Patients on their way to appointments or coming for laboratory tests will see this display the main message of which is that people should talk with their loved ones about endoflife issues This display is stocked with Making Choices booklets and worksheets A display has also been placed in the public libraries along with Making Choices materials at the reference desk This display also indicates that the Making Choices video can be checked out at the audiovisual desk of the library These materials are provided to the libraries at no charge 2007 Gundersen Lutheran Medical Foundation Inc Video It has been more difficult to make the video widely available than it has been for the brochures and worksheets Many organizations lack an easy way to loan the video to patients Many groups within the organizations allow patients to take the video home An organization s health resource center may loan the video as well The video is shown twice a day on the inhouse cable system in the hospital Media We have attempted to keep endoflife treatment planning and discussion in front of the public by encouraging stories in the local print and broadcast media Our own organization has newspaper inserts and other newsletters Local talk radio programs are often looking for a guest to talk about endoflife issues Such shows can become an important way to reach a whole new audience An effort to promote and explain advance care planning is made at least twice a year In each of these media efforts it is important to indicate where people can obtain more information or assistance so the ability to respond to requests must be in place before such publicity is undertaken 2 Involve area leaders from organizations such as religious groups businesses and law firms As these leaders become better informed about advance care planning they can assist their respective groups in learning more about the relevant issues One strategy used in some communities is to include community leaders on the institutional ethics committee The goals of these ethics committees therefore include reaching out to the community and holding community members responsible for organizing and supporting educational programming Endoflife treatment discussions occur in many settings outside of health organizations In particular they occur with some frequency at religious organizations and attorneys offices Attempts to develop good working relations with both of these groups should be part of any program The advance care planning facilitator course is open to both clergy and attomeys While the number of attorneys who have attended is small success at attracting clergy and parish nurses has been good Support from local bishops and grant money from some religious foundations have subsidized training of the clergy When a clergy member or someone from a religious organization successfully completes the advance care planning facilitator program the religious organization is given a set of patient educational materials including the video to use with their community We have also met with groups of clergy to explain the program and to provide an introduction to the Respecting Choices program Whenever possible we make presentations to local religious organizations 2007 Gundersen Lutheran Medical Foundation Inc Chapter 613 Interaction with the legal community has been accomplished in two ways We have sent letters explaining our work with advance care planning and addressing problems commonly found in advance directives created by local attorneys Mailing lists have been obtained through either the bar association or a mail label service We have also made advance care planning presentations to the county bar association These presentations have focused on identifying technical problems commonly seen in advance directive documents and on explaining the Respecting Choices programs We also emphasize that effective advance care planning involves more than completing a document it is important that the process incorporate re ection and understanding These contacts have been very helpful in creating a collaborative relationship between attorneys and health organizations regarding advance care planning 3 Develop partnerships with community media personnel to host radio talk shows advertise educational programs and publicize patient stories among other goals 4 Survey members of the community about their knowledge of advance care planning Ask for their suggestions for educational programs and ideas for focus groups among others 5 Participate in community events such as local fairs festivals and healthrelated programs 6 Organize and present formal and informal community education on advance care planning When giving a presentation to a community group it is important to establish how long they are expecting you to speak Some groups have only 1520 minutes while others allow 6090 minutes Depending on the length of time and the group s goals the presenter will be able to cover more or less material with or without a lot of detail Find out how many people are expected to attend and what equipment will be needed for presentation as well In all cases provide attendees with brochures to take home and information about how they can get additional advance care planning assistance Recognize that talking about death and dying will make some people uneasy It may remind them of difficult decisions they have already made or of which they have been part Tell the audience that while some of the information may cause some pain the importance of the topic warrants frank and honest discussion 7 One of the best ways to reach the community is through your healthcare organization s employees Include education for employees at their orientation and at annual health fairs Encourage your employees to engage their families in advance care planning Make sure they know about your organization s advance care planning program and where to go for assistance Chapter 614 2007 Gundersen Lutheran Medical Foundation Inc Continuous Quality Improvement Measuring the Effectiveness of an Advance Care Planning Program The often repeated phrase If you don t measure it you can t improve it certainly applies to advance care planning programs An organization must be accountable not only for producing programs that are of value to the patients and families they serve but also for proving those programs worthy of the organization s investment of time and resources As programs are implemented organizational efforts should include establishing specific quality outcome goals designing methods to measure attainment of those goals and making continuous improvements based on these findings Selection of adequate quality outcomes and appropriate tools to measure the effectiveness of an advance care planning program are just beginning to emerge What is acknowledged is that while collecting data on the number of advance directives completed is a beginning it is not enough Research has demonstrated that even when written advance directives have been completed their existence is unknown they are unavailable when needed or they are ineffective in in uencing treatment decisions Advance care planning monitoring must measure outcomes indicative of an effective process as defined by improved communication and patient understanding the raw number of completed advance directive documents cannot measure such variables Researchers have suggested the following as quality indicators of an effective advance care planning process improved patient understanding of the importance of participating in advance care planning improved communication pathways between patient physician and other healthcare professionals evidence that patient preferences were followed and transferred to treatment decisions completion of advance directives well before a medical crisis increased patient and family satisfaction with the advance care planning process the experience of dying the amount of burden placed on loved ones and so forth documentation of advance care planning discussions Since the La Crosse Advance Directive Program was implemented participating organizations have engaged in several quality improvement activities A few examples are provided 1 Video Evaluation The Making Choices video was developed to motivate viewers to discuss endoflife issues with their loved ones After viewing the video more than 669 individuals from 32 groups completed the survey the results of which indicated that 2007 Gundersen Lutheran Medical Foundation Inc Chapter 615 a the video helped them understand the importance of advance care planning 949 b they would recommend the video to family or friends 963 c they were very likely 605 or would possibly 277 talk with another family member about an advance directive 2 Quality Improvement Projects a A yearly raw count of advance directive documents in patient healthcare records was made A survey of charts has been conducted in the general file room in specific medical specialty departments and for patients discharged from the hospital between 1993 and 1996 This ongoing data collection has shown a steady increase in the number of advance directive documents recorded in patient healthcare records b A focused quality improvement project was developed by the Advance Directive Quality Improvement Task Force at Gundersen Lutheran using the PlanDoCheck Act PDCA improvement model With representatives from all disciplines the Task Force spent a considerable amount of time describing the process of handling advance directive documents and advance care planning education The resulting ow diagram revealed not only that the process was more complicated than supposed but also that the actual process did not correlate with established procedures This analysis identified several problems and gaps Two of the problems and the actions taken to solve them will be described 1 Initial RN patient interaction A survey of nursing staff identified considerable variation of practice and behavior regarding questioning of patients about advance directives upon their admission to a nursing unit Some RNs asked the question Do you have a living will while others asked Do you have a Power of Attorney for Healthcare or Do you have a written advance directive Clearly this inconsistent terminology is confusing to patients and often indicated limited staff understanding It became clear that even when patients indicated that they had documents of some type nurses were not asking where the documents were located and therefore not ensuring that they were entered into the medical records The survey also revealed that nursing staff did not know how to get help for patients who had questions about advance care planning or about completing advance directives We needed an improvement strategy that was more effective than just another educational inservice In our approach written scripts were created to provide an organizational standard for nursing practice One script dealt with the admitting Chapter 616 2007 Gundersen Lutheran Medical Foundation Inc nurse asking patients about advance directive documents and the other script dealt with the case manager asking patients with no written advance directive about their endoflife preferences These scripts are provided in appendix III at the end of this chapter A posttest demonstrated more consistent practice and behavior after this intervention Over a year after the intervention 86 of nurses could correctly explain what an advance directive was compared with 70 before the intervention Nurses were also much more likely to specifically inquire if patients had a power of attorney for healthcare after the intervention 72 vs 47 They were more likely to ask patients where their document was located 92 vs 77 Nurses were also more likely to ask patients who did not have an advance directive if they wanted more information 96 vs 86 and were more likely to provide patients with additional information 27 vs 3 2 A second improvement opportunity concerned the inconsistent transfer of patients advance directive documents from their health records to their unit records upon admission to the hospital as was required by hospital policy Education for unit secretaries was provided and the hospital policy was revised to incorporate terminology consistent with that used on the units c In 2000 an advance care planning work group gathered for a brainstorming session on the status of the current program what was working and what needed to be improved It was decided to examine the level and quality of advance care planning discussions with patients with chronic progressive illness congestive heart failure CHF and chronic obstructive pulmonary disease COPD in the outpatient setting with the goal of encouraging early discussion of preferences for future medical care in this patient population Prior to making any changes three assessments were conducted 1 Through physician interviews we explored physician views and concerns regarding advance directives and the frequency and quality of advance care planning discussions 2 Through a chart audit we determined the number of CHF and COPD patients who had completed advance directives and 3 Through patient telephone interviews we assessed the level of patient satisfaction with advance care planning discussions Results of the chart audit N111 revealed that 48 of patients with a diagnosis of CHF or COPD had executed an advance directive Of these 94 were in the medical record 24 requested no CPR under certain conditions and 15 of the records had evidence of documentation of an advance care planning discussion 2007 Gundersen Lutheran Medical Foundation Inc Chapter 617 Results of the physician interview demonstrated that while a high percentage 89 of physicians initiated advance care planning discussions only 26 initiated conversations with all patients reserving these conversations for those more seriously ill 36 or those who were older 16 Barriers identified by the physicians who were interviewed was lack of time and an insufficient pool of people to whom to refer patients for advance care planning Most physicians were comfortable initiating advance care planning discussions 84 and supported other qualified professionals having these conversations for all 62 patients or some 23 patients The results of the patient telephone interviews revealed that few patients had discussed their preferences for future healthcare decisions with their physicians 31 their chosen healthcare agent 36 or their loved ones 33 These assessments proved to be very effective in raising awareness of the need to improve advance care planning strategies and in engaging professionals in making suggestions for change As a result of this quality improvement project we increased the number of trained advance care planning facilitators available to this patient population clarified role responsibilities for advance care planning in the clinic investigated strategies for improving documentation of the advance care planning discussion and increased focus on improving communication between the patient chosen healthcare agent and physician To improve communication between the patient chosen healthcare agent and physician an Information Card for Healthcare Agents was developed which outlines the healthcare agent s responsibilities and suggests strategies to promote increased understanding of patient preferences In addition Respecting Choices faculty incorporated strategies for strengthening the role of the healthcare agent into the facilitator manual and certification program The La Crosse Advance Directive Study The outcomes of these initial efforts to develop a community and organizational approach to advance care planning were studied in a project entitled the La Crosse Advance Directive Study LADS which retrospectively reviewed all adult deaths in all local healthcare organizations for an 11month period in 1995 and 1996 The objectives of the study were to determine the prevalence and type of endoflife planning and its correlation with treatment decisions Data were collected from medical records from death certificates and from interviews with attending physicians and healthcare proxies While other studies have Chapter 618 2007 Gundersen Lutheran Medical Foundation Inc documented low rates of advance directive completion the LADS results stand in stark contrast Of the 540 deaths included in the study the prevalence of Written advance directives was 85 with most of these 95 found in the medical record Median time between the recording of the completed advance directive and death was 12 years clear evidence of planning in advance of a medical crisis And unlike other studies which have found poor correlation between advance directive preferences and actual treatment decisions We found that patient preferences to forgo lifesustaining treatment were honored by consistent medical orders re ecting these preferences While there are still lessons to be learned and improvements to be made the results of the LADS provide strong evidence that certain strategies are likely to have a significant impact on the ability of healthcare systems to assist patients in choosing endoflife preferences and the Willingness of health professionals to respect them 2007 Gundersen Lutheran Medical Foundation Inc Chapter 619 Chapter 6 Exercises 1 Identify strategies for ensuring that an individual s completed endoflife treatment plan gets transferred to the medical record 2 Describe four principles for implementing an organizational and community Wide advance care planning program 3 Describe the role of the physician and nurse in advance care planning 4 What strategies would you implement to involve the community you live in to engage in advance care planning discussions Chapter 620 2007 Gundersen Lutheran Medical Foundation Inc Appendix I Gundersen Lutheran Policy on Advance Care Planning and Advance Directives Advance Care Planning ACP and assistance in creating a written plan is accomplished by a team of professionals and nonprofessionals to include nurses social workers pastoral care volunteers and physicians Honoring Advance Directives The desires of an adult patient who is capable of making his or her own health care decisions supersede the effect of an advance directive at all times If an adult patient has been determined to be incapable of making his or her own health care decisions and is not voicing any contrary preferences then the patient s advance directive is presumed to be valid An advance directive would be consider invalid only if there is credible evidence that An advance directive should be followed to the extent that it does not require a physician to perform any criminal act does not violate that physician s personal or professional ethical responsibilities or does not violate accepted standards of professional practice If a physician is unwilling to honor an advance directive because it violates his or her personal ethical beliefs then transferring the care of the patient to another physician should be discussed with the patient or the patient s surrogatess Advance directives relevant to immediate patient care e g no resuscitation indicated will be written by the attending physician on the Hospital order sheets or out of hospital orders like the Physicians Orders for LifeSustaining Treatment POLST form Validity In all cases in which an advance directive is to be disregarded persuasive and credible evidence must exist that The patient lacked decision making capacity at the time the directive was made The directive is a forgery or The directive has subsequently been revoked by the patient An advance directive should be followed to the extent that it does not require a staff to perform any criminal act does not violate the treating staffs personal or professional ethical responsibilities or does not violate accepted standards of professional practice If someone treating the patient is unwilling to honor an advance directive because it violates his or her personal ethical beliefs then transferring the care of the patient to another qualified staff member should be discussed with the patient or the patient s surrogatess Advance directives relevant to immediate patient care e g Do Not Attempt Resuscitation will be converted by the attending physician into written orders on the Hospital order sheets 2007 Gundersen Lutheran Medical Foundation Inc Chapter 621 or out of hospital orders like the Physicians Orders for Life Sustaining Treatment POLST form In cases where a patient is facing a emergent lifethreatening medical condition and the person39s advance directive cannot be reviewed in a timely manner ie staff do not know who the patient is cannot access the patient s advance directive in a reasonable time or simply do not have time to review the patient39s advance directive prior to making medical decision treatment of the patient39s condition should be initiated If it is determine at a later time that the treatment started is not what the patient would have wanted then forgoing the treatment should be considered Review Ordinarily there should be no need to seek review of the enforceability of an advance directive anymore than there ought to be routine review of a patient s oral wishes However when doubts or con icts arise such as when there is con ict between the advance directive and the wishes of the patient s family or when there is a substantial doubt as to the authenticity of the advance directive a consultation should be sent to the Institutional Ethics Committee for its recommendations Education Patients and families are educated on Advance Care Planning by use of the Making Choices educational program materials Adult patient should be provided minimally the Making Choices Information Card at the following times 1 Upon admission to a nursing unit in the hospital and 2 Prior to any procedure or delivery that includes conscious sedation or general anesthesia Staff are educated on Advance Care Planning in the following ways depending on role and responsibility 1 Computerbased training program on Advance Care Planning as determined by their manager according to their role and responsibility 2 Consultation by inhouse ethics consultants and Advance Care Planning Coordinator 3 Attendance at conferences and inservices as required 4 Completion of Respecting Choices Advance Care Planning Training required of all Advance Care Planning Facilitators Definitions ADULT PATIENT Any person at least 18 years old Chapter 622 2007 Gundersen Lutheran Medical Foundation Inc ADVANCE CARE PLANNING A process of assisting individuals in understanding re ecting and communicating future medical treatment preferences including endoflife care ADVANCE CARE PLANNING FACILITATORS Designated individuals who have either attended the Respecting Choices Advance Care Planning Course for Facilitators or who are being trained by the Pastoral Care staff and have assigned roles and responsibilities Within the Advance Care Planning Team ADVANCE DIRECTIVE any Written document representing the wishes and values of an adult either While a patient or prior to becoming one that a designates another persons ie surrogatess to make healthcare decisions on behalf of the patient if the patient is unable to make decisions for himself or herself b gives instructions to a healthcare professional as to the patient s desires about healthcare decisions or c both designates a surrogate and gives instructions To meet this definition for the purposes of this policy an advance directive need not comply with any particular form for formalities as long as it is in Written form and it appears to be authentic IT SHOULD BE NOTED THAT ADVANCE DIRECTIVES THAT DO NOT MEET THE STATUTORY REQUIREMENTS OF WISCONSIN S CHAPTER 154 OR 155 MAY NOT PROVIDE THE LEGAL PROTECTION AS SPECIFIED IN THOSE STATUTES PRIMARY PHYSICIAN The attending physician who is responsible for the patient s care Implementation INITIATING ADVANCE CARE PLANNING DISCUSSIONS The needs of individuals and their families for advance care planning will arise at different times and in different places They Will therefore benefit from health care professionals who initiate discussions provide appropriate information and develop follow up plans Initiating advance care planning discussion should be considered at any of the following times 1 As an outpatient or ambulatory component of a routine examination It is the goal of the organization to review advance care planning at each annual exam for all patients 55 and older 2 As an inpatient component of admission assessment 3 As a scheduled appointment with an advance care planning facilitator 4 As an individual expresses interest 5 As an individual s health status changes 2007 Gundersen Lutheran Medical Foundation Inc Chapter 623 ROLES AND RESPONSIBILITIES OF ADVANCE CARE PLANNING TEAM The Role of the Registered Nurse On Admission to the hospital by use of the ACP application in CWS 1 Determine if patient has a written advance directive 2 Determine if the advance directive is brought in with the patient or is entered in the ACP application in CWS or is in the paper medical record 3 If the advance directive is not available a Designate a person eg family member friend to bring in the advance directive as soon as possible b Obtain essential information that may be included in the advance directive such as the name and phone number of the healthcare agent preferences for Do Not Resuscitate DNR Do Not Intubate DNI etc 4 Review available advance directive with the patient and ask if it represents current preferences 5 Notify physician of patient preferences that are new or have not been previously expressed DNR and require a physician s order for honoring patient preference 6 If no advance directive exists a Offer to assist patient by giving information eg Making Choices planning guide booklet information card healthcare agent card or power of attorney for healthcare document b Ask if the patient wishes to designate a surrogate decision maker and explain why this designation might be useful and needed Additionally the RN will 1 Provide information clari cation and emotional support as needed 2 Make referrals to Advance Care Planning Facilitators as appropriate 3 Advocate for a plan of care consistent with patient preferences The Role of Advance Care Planning Facilitators includes physicians nurses social Workers pastoral care 1 Assist individuals in advance care planning promote understanding re ection and communication of future medical decisions and endoflife treatment preferences 2 Make initial assessment of advance care planning needs and provide information 3 Facilitate discussions about treatment preferences according to their level of training and experience with healthy adults Chapter 624 2007 Gundersen Lutheran Medical Foundation Inc with adults with chronic progressive illnesses With adults with illnesses they may die from in the next 12 months with adults with a new serious acute illness 4 Determine treatment preferences 5 Provide educational materials 6 7 Document advance care planning discussions and interventions in the Advance Care Planning application in CWS May provide community education as requested The Role of the Physician 1 2 Initiate advance care planning discussions as appropriate Provide information and clarification of patient s medical condition Provide educational materials to assist with advance care planning Make referrals to Advance Care Planning Facilitators as needed Review and clarify patient s submitted advance directive Document advance care planning discussions Review advance directive documents upon admission to a hospital nursing home hospice or home health agency discuss preferences with patient or designated healthcare agent surrogate if possible and write appropriate orders for the patient Dictate any changes to the patient s plans for future care in an Advance Directive Section The Role of Pastoral Care 1 4 2007 Gundersen Lutheran Medical Foundation Inc Respond to referrals from interdisciplinary team members to review and enter existing advance directives provide information and assist in completion of Advance Care Planning documents and to document as needed in the Advance Care Planning application in CWS Provide emotional spiritual and religious support to patients and families who are struggling with endoflife decisions Assist patients and families in discerning their advance care planning preferences and communicating them to appropriate healthcare providers Make referrals to other interdisciplinary team members as needed Chapter 625 5 In addition pastoral care administrative staff will help coordinate referrals to acp facilitators maintain supplies of advance care planning materials coordinate orientation of volunteers process advance directives from outpatients 6 Document activities in Education Notes section of CWS The Role of Facilitator Volunteers 1 Assess an individual s advance care planning needs 2 Distribute advance care planning educational materials as appropriate and provide explanations 3 Make referrals to professional resources physicians nurses social workers clergy etc as appropriate 4 Assist individuals in completing a valid power of attorney for healthcare POAHC document 5 Enter a completed power of attorney for healthcare POAHC into the patient s electronic medical record through the Advance Care Planning application in CWS 6 Document activities on Advance Care Planning Record The Role of Social Worker 1 Respond to referrals from interdisciplinary team members to review and enter advance care planning documents provide information and assist in completion of document and document as needed in the Advance Care Planning application in CWS 2 Assist patients and families in discerning their advance care planning preferences and communicating them to appropriate healthcare providers 3 Make referrals to other interdisciplinary team members as needed 4 Provide assistance with financial planning as appropriate ENTERING REMOVING AND TRANSFERRING ADVANCE DIRECTIVES An advance directive may be entered or removed by authorized staff to include physicians advance care planning facilitators designated HIM staff HUC s and other healthcare providers as designated by the physician ENTERING AN ADVANCE DIRECTIVE 1 Review the advance care planning document for authenticity accuracy and clarity Chapter 626 2007 Gundersen Lutheran Medical Foundation Inc 2 Enter the document into the Advance Care Planning application in CWS 3 Stamp the document in the upper right hand corner Entered on Write in the date and your initials by the stamp Stamps are available on all units 4 Place the completed document in the green plastic sleeve and place in the front of the paper medical record 5 When a new document is scan into CWS HIM will send a letter of receipt and stamp the docment quotScannedquot 6 Notify physician of advance directives that include red ags ie new preferences for withholding life sustaining treatment such as No CPR cardiopulmonary resuscitation lack of knowledge regarding medical condition andor personal information regarding a person s life that may require investigation by the physician REMOVING AN ADVANCE DIRECTIVE 1 Notify the Help Desk when a patient makes an oral or written request to have an advance directive removed from the medical record A ticket will be opened and sent to the appropriate group to be removed 2 Authorized staff will document removal on the Advance Care Planning application in CWS and return the paper advance care planning document to the patient TRANSFERRING AN ADVANCE DIRECTIVE The responsibility to transfer advance directives is assigned to the unit secretary the social worker of the nursing care unit a nurse in the clinic or a medical records person as appropriate 1 Upon hospitalization the unit secretary will transfer the green sleeve and its contents from the patient s paper medical record to the hospital chart The attending physician or resident should review this document and discuss its contents with the patient or a designated surrogate if possible before writing orders based on the advance directive document 2 Upon discharge the unit secretary will transfer the green sleeve back to the front of the patient s paper medical record 3 A social worker a nurse in the clinic or a medical records person as appropriate will provide a copy of an advance directive to a The hospital where a patient is likely to go for emergency services b Another healthcare facility if patient is being transferred from Gundersen Lutheran or its affiliates c Another healthcare facility or physician caring for the patient if requested by the patient or the patient s physician 2007 Gundersen Lutheran Medical Foundation Inc Chapter 627 DOCUMENTATION Document all advance care planning discussions and activities in the Advance Care Planning application in CWS as appropriate Chapter 628 2007 Gundersen Lutheran Medical Foundation Inc Appendix II Advance Care Planning Request Intake Form Date of request Name of patient Unit room department Current code status as appropriate Patient s state of residence Person requesting advance care planning information Best time to meet with the patient Comments 2007 Gundersen Lutheran Medical Foundation Inc Chapter 629 APPENDIX III Sample Script and Flow Chart for Advance Care Planning Admission Assessment by Registered Nurses ScriptIProtoco for Unit Nurses Asking Patients about Advance Directives Interview Script I would like to ask you some questions regarding your views or thoughts about future medical treatment I know that these questions make some people uneasy but I want to assure you that we ask all patients these questions so we might better understand and respect your values and beliefs Have you ever written down any of your thoughts or choices about future medical treatment say in a Power of Attorney for Healthcare a living will or some other type of advance directive You may need to explain what each of these names means See the definitions at the end of this section If the answer is yes If the answer is no Is this document in your medical Have you ever considered or thought about record these issues for yourself No Would you like to receive some educational materials besides this information card point Would you like to have it put out card to patient or would you like to talk into your medical record with someone about advance care planning Check resource list for options Yes We should you review Is there anything you would like the staff to the document to make sure it is know about your thoughts or values regarding up to date your medical care Chapter 630 2007 Gundersen Lutheran Medical Foundation Inc Note If a patient is too ill or confused on admission ask the above questions later or ask the family if they can provide the answers If a patient has a No CPR order and they are soon to be discharged ask them if they would Want to record this preference in their medical record or ask the physician about the completion of the Physician Order for Life Sustaining Treatment POLST form Definitions Advance Directive Any statement oral or written made by a capable adult that indicates how he or she would want medical decisions to be made if the adult was to become unable to make them personally Power of Attorney for H ealthcare A legal document in which a capable adult the principal appoints another the agentproxy to make his or her healthcare decisions if the principal becomes unable to make them Note A regular power of attomey is for financial matters only Living Will A legal document in which a capable adult gives instructions to limit or stop certain medical treatments if the adult was incapable and had an irreversible condition Note Some people confuse a will with a living will List of Resources Patient Education Materials Making Choices TM Booklet This l2 page booklet provides basic information about advance care planning and many stories about end of life decision making Making Choices TM Planning Guide This is a 4 page worksheet that can help individuals and their families reflect on their values and beliefs Making Choices TM Video This 15minute video provides insight into the importance of discussing future medical treatments with loved ones The video is played on the hospital education channel seven days a week at 1100 and 1600 hours at Gundersen Lutheran Medical Center in La Crosse Wisconsin 2007 Gundersen Lutheran Medical Foundation Inc Chapter 631 Advance Care Planning Facilitators A list of trained facilitators would be provided here Chapter 632 2007 Gundersen Lutheran Medical Foundation Inc ission Sample Flow Chart for Advance Care Planning Adm Assessment by Registered Nurses mmnmoamo new 59 mEoma co S cou gtEm coc C9ogtgt moow 0 3 umz cw 2 9 5 Emacs on comcEoou 9 85 mlt cmEomw mwgt monmcoamo ucm 29 mucozmu 9 co mgtm Vcmaxmam 32 oz ESE cowowu EoEmm moomE gtcm 8 cmEmm 39 us 8900 C9ogtgt moom 3 noc cm 8 2 5 985 9ogtgt ma coz cmeaoou muom E5 xmlt HEmE2mw 2 E3 cozmuczoz oz Egan 9 c coz cosaoou 0 m mmgt mmgt comgtom Scam cmowEn taco zawcoo Lcm mxmuw monmcoam9 ucm 25 228 o U coo gtEm EoE mE2mgtw tonasm coz cm aoou 955 9 c 2 36 m 898 gtEm w mmm ummcmzo 8 um 938 cowoou 9 55 E coo cowoaam m5 c 3 u cmssooc mmm m oco mcmE comomu 5 Emma E8 on go coo 288 m Em soou ucm enema cmEomm oz taco 88 9 cm 550 Qoczweom UOEOEDUOU olton 9 oz m umrcmc cmumm 32 m mama 2 oz taco 33 m5 2 mmgt 8u 0IltOn m mgtmc Emama o5 mmoo 6903800 coz cmeaooo oz m mmocmm a 50gt Scan 265 2 now oz wmm mc gtm 99 m oZ mmmmE cozmozum wgtwo2 2 9 9 23gt comSamon mc3oo So mmoo moaEw m 5 mnE new 95 m9mE comowu Eoomm mmgt Enmamo Eozma 9 2 NOON gtamp gtgt 0390 N4 mo comzuncaw mouc9moa mEwgt 0 cmomEa gt502 osm m A moocmcmcoa m ogt Eossoou 2 mama m vmmcv mmgt mm2mE 2maoampm 23mo cmEomw mmgt mzmo mommn 2 E3 cozmoczoz cmowEq u9maEo0 o cwEooo 9 gt50 88 2 m 0 m Ewzma mogt ms 5 85535 mac mEo3 oz 9 06 momcmzo cwEQEw mmo m2mmn 2 E3 cozmoczoz c5ma mmgt Emu oumgtum Soon gtuonoEom 2 53 9 En 2 on 2925 moow 0 oz 5 95 2 Emzma mnm osooon 205 2 93 50gt 8 oxmE comoou m omom 2 Em ogt oo oz Esau cwzgt mgtm mmgt 95 26 mgtmm n0lt 9o 3 2m ummE comcoEoou xwlt coEoSw oz omoocmcococa oz 0 new gtcm no ogtmI w mmoc ma mEoma 05 609 m cmEoou 9 00 mmgt 22a 88 0 ms c gt Eweaoov 9 m mwgt Chapter 633 2007 Gundersen Lutheran Medical Foundation Inc Chapter 6 FURTHER READING Academy of Hospice and Palliative Medicine wwwaahpmorg American Hospice Foundation wwwamericanhospiceorg Approaching death Improving care at the end of life wwwnapedureadingroombooksapproaching Badzek L A Leslie N Schwertfeger R U Deiriggi P Glover J amp Friend L 2006 Advanced care planning A study on home health nurses Applied Nursing Research 192 5662 Berns R amp Colvin E R 1998 The final story Events at the bedside of dying patients as told by survivors ANNA Journal American Nephrology Nurses Association 256 583587 Briggs L amp Colvin E 2002 The nurse s role in endoflife decisionmaking for patients and families Geriatric Nursing 236 302310 Christakis N A 1999 Death foretold Prophecy and prognosis and medical care Chicago University of Chicago Press Curtis J R 2004 Communicating about endoflife care with patients and families in the intensive care unit Critical Care Clinics 203 363380 Curtis J R amp Engelberg R A 2006 Measuring success of interventions to improve the quality of endoflife care in the intensive care unit Critical Care Medicine 3411 Suppl S341S347 Curtis J R Engelberg R A Wenrich M D Shannon S E Treece P D amp Rubenfeld G D 2005 Missed opportunities during family conferences about endoflife care in the intensive care unit American Journal of Respiratory amp Critical Care Medicine 1 718 844849 Degenholtz H B Rhee Y amp Arnold R M 2004 Brief communication The relationship between having a living will and dying in place Annals of Internal Medicine 1412 1 131 17 Easson A M 2005 Should research be part of advance care planning Critical Care London England 91 1011 End of Life Nursing Education Consortium ELNEC wwwaacnncheeduelnec End of Life Physician Education Resources EPERC wwwepercmcwedu Fallowfield L Jenkins V Farewell V amp SolisTrapala I 2003 Enduring impact of communication skills training Results of a 12month followup British Journal of Cancer 898 14451449 Fowler F J Jr Coppola K M amp Teno J M 1999 Methodological challenges for measuring quality of care at the end of life Journal of Pain amp Symptom Management 172 114119 Chapter 634 2007 Gundersen Lutheran Medical Foundation Inc Gallagher R 2006 An approach to advance care planning in the office Canadian Family Physician 52 459464 Gallo J J Straton J B Klag M J Meoni L A Sulmasy D P Wang N Y et al 2003 Lifesustaining treatments What do physicians Want and do they express their Wishes to others Journal of the American Geriatrics Society 517 961969 Gilmer T Schneiderman L J Teetzel H Blustein J Briggs K Cohn F et al 2005 The costs of nonbeneficial treatment in the intensive care setting Health Affairs 244 961971 Growth House Inc WWWg139OWtl ll lO11S O139g Hough C L Hudson L D Salud A Lahey T amp Curtis J R 2005 Death rounds Endoflife discussions among medical residents in the intensive care unit Journal of Critical Care 201 2025 Kellermann A amp Lynn J 2006 Withholding resuscitation in prehospital care Annals of Internal Medicine 1449 692693 Lacey D 2005 Nursing home social worker skills and endoflife planning Social Work in Health Care 404 1940 Lautrette A Darmon M Megarbane B Joly L M Chevret S Adrie C et al 2007 A communication strategy and brochure for relatives of patients dying in the ICU New England Journal of Medicine 3565 469478 Lorenz K A Lynn J Morton S C Dy S M Shugarman L M Wilkinson A et al 2005 Methodological approaches for a systematic review of endoflife care Journal of Palliative Medicine 8Suppl 1 S4S11 Lynn J 2002 Lessons from the end of life in the program of allinclusive care of the elderly Medical Care 4012 11331135 Lynn J Arkes H R Stevens M Cohn F Koenig B Fox E et al 2000 Rethinking fundamental assumptions SUPPORT s implications for future reform Study to Understand Prognoses and Preferences and Risks of Treatment Journal of the American Geriatrics Society 485 Suppl S214S221 Lynn J Nolan K Kabcenell A Weissman D Milne C Berwick D M et al 2002 Reforming care for persons near the end of life The promise of quality improvement Annals of Internal Medicine 1372 117122 Medvene L J Wescott J V Huckstadt A Ludlum J Langel S Mick K et al 2003 Promoting signing of advance directives in faith communities Journal of General Internal Medicine I811 914920 Meier D E Gold G Mertz K Taylor B CammerParis B E Seckler A et al 1996 Enhancement of proxy appointment for older persons Physician counselling in the ambulatory setting Journal of the American Geriatrics Society 441 3743 Molloy D W Bedard M Guyatt G H Patterson C North J Jubelius R et al 1997 Attitudes training issues and barriers for community nurses implementing an advance directive program Perspectives 211 28 2007 Gundersen Lutheran Medical Foundation Inc Chapter 635 The National Center for Advanced Illness Coordinated Care wwwcoordinatedcarenet National Hospice and Palliative Care Organization wwwnphaorg Okon T R Evans J M Gomez C F amp Blackhall L J 2004 Palliative educational outcome with implementation of PEACE Tool integrated clinical pathway Journal of Palliative Medicine 72 279295 On our own terms Moyers on dying wwwpbsorgonourownterms Pauls M A Singer P A amp Dubinsky I 2001 Communicating advance directives from longterm care facilities to emergency departments Journal of Emergency Medicine 211 8389 Promoting excellence in endoflife care wwwpromotingeXcellenceorg Robert Wood Johnson Foundation wwwrw39forg Sanders C Seymour J Clarke A Gott M amp Welton M 2006 Development of a peer education programme for advance endoflife care planning International Journal of Palliative Nursing 125 214 Schneiderman L J 2006 Effect of ethics consultations in the intensive care unit Critical Care Medicine 3411 Suppl S359S363 Steinhauser K E 2005 Measuring endoflife care outcomes prospectively Journal of Palliative Medicine 8Suppl 1 S30S41 Teno J M 1998 Looking beyond the form to complex interventions needed to improve endoflife care Journal of the American Geriatrics Society 469 11701171 Teno J M 2004 Donotresuscitate orders and hospitalization of nursing home residents Trumping neglect or shared decisionmaking at the eleventh hour Journal of the American Geriatrics Society 521 159160 Teno J M Clarridge B Casey V EdgmanLevitan S amp Fowler J 2001 Validation of Toolkit AfterDeath Bereaved Family Member Interview Journal of Pain amp Symptom Management 223 752758 Teno J M Clarridge B R Casey V Welch L C Wetle T Shield R et al 2004 Family perspectives on endoflife care at the last place of care JA1W139 The Journal of the American Medical Association 2911 8893 Teno J M amp Lynn J 1996 Putting advancecare planning into action Journal of Clinical Ethics 73 205213 Thornton J D Curtis J R amp Allen M D 2006 Completion of advanced care directives is associated with willingness to donate Journal of the National Medical Association 986 897904 Tigert J Chaloner N Scarr B amp Webster K 2005 Development of a pamphlet Introducing advance directives to hemodialysis patients and their families CANN T Journal The Journal of the Canadian Association of Nephrology Nurses and Technicians 151 2024 Tilden V P Tolle S Drach L amp Hickman S 2002 Measurement of quality of care and quality of life at the end of life Gerontologist 42Spec 3 7180 Chapter 636 2007 Gundersen Lutheran Medical Foundation Inc TIME Toolkit of Instruments to Measure Endoflife care www chcr brown edupcoctoolkit htm Tucker E H 2002 The importance of endoflifetreatment preferences among older adults Nursing Ethics an International Journal for Health Care Professionals 95 561562 Tulsky J A Fischer G S Rose M R amp Arnold R M 1998 Opening the black box How do physicians communicate about advance directives Annals of Internal Medicine 1296 441449 Watson B 2005 Introducing advance directives in the hemodialysis unit CANNT Journal The Journal of the Canadian Association of Nephrology Nurses and Technicians 152 89 Weiner J S amp Cole S A 2004 ACare A communication training program for shared decision making along a lifelimiting illness Palliative amp Supportive Care 23 231 241 Weiner J S amp Cole S A 2004 Three principles to improve clinician communication for advance care planning Overcoming emotional cognitive and skill barriers Journal of Palliative Medicine 76 817829 White D B amp Curtis J R 2006 Establishing an evidence base for physicianfamily communication and shared decision making in the intensive care unit Care Medicine 349 25002501 Wieland D Lamb V L Sutton S R Boland R Clark M Friedman S et al 2000 Hospitalization in the Program of Allinclusive Care for the Elderly PACE Rates concomitants and predictors Journal of the American Geriatrics Society 4811 1373 13 80 Wissow L S Belote A Kramer W ComptonPhillips A Kritzler R amp Weiner J P 2004 Promoting advance directives among elderly primary care patients Journal of General Internal Medicine 199 944951 Yamada R Galecki A T Goold S D amp Hogikyan R V 1999 A multimedia intervention on cardiopulmonary resuscitation and advance directives Journal of General Internal Medicine 149 559563 Yetman L 2004 Helping patients make their Wishes known Home Healthcare Nurse 228 576 Zapka J G Hennessy W Carter R E amp Amella E J 2006 Endoflife communication and hospital nurses An educational pilot Journal of Cardiovascular Nursing 213 223231 Zweig S C Kruse R L Binder E F Szafara K L amp Mehr D R 2004 Effect of do notresuscitate orders on hospitalization of nursing home residents evaluated for lower respiratory infections Journal of the American Geriatrics Society 521 51 58 2007 Gundersen Lutheran Medical Foundation Inc Chapter 637 Chapter 638 2007 Gundersen Lutheran Medical Foundation Inc Respecting Choices An Epilogue Respecting Ch0ices Advance Care Planning for Other Populations This manual has focused on the advance care planning facilitation skills for three categories of capable adults basic planning for any adult planning for adults with chronic progressive illness and planning for adults whose death in the next 12 months would not surprise us and for those living in long term care facilities Many other groups of individuals will need advance care planning assistance including minors previously capable but now incompetent or incapable adults with no written advance directive nevercompetent adults and capable adults with a new serious medical problem who have no previous advance care planning Advance care planning facilitation skills will need to be adapted to the needs of each of these groups and to the specific circumstances in which planning occurs We will provide a summary of how advance care planning skills may be modified for each of these groups Advance Care Planning Skills for Patients with New Serious Medical Problems Who Have Not Considered Advance Care Planning Every day adults who were previously healthy or had only minor medical problems are faced with new serious medical problems If these patients have had no previous experience with advance care planning the ideal process described in this manual may not be possible Examples of adult patients in this category include those with newly diagnosed coronary artery disease or recent heart attack who need to have bypass surgery or those with a resolving stroke who are at high risk for additional strokes In such circumstances it is important to determine if the person is capable of participating in limited or eventspecific advance care planning Many healthcare providers avoid initiating the topic of advance care planning because they fear that it will create additional anxiety in a patient who is already suffering major changes in health status While this fear is understandable it may re ect the provider s attitudes knowledge or skill not the patient s needs or desires Most often patients are worried about the worstcase outcomes and providing an opportunity to discuss their fears and concerns can actually lower anxiety Initiating these conversations requires skill and sensitivity It is especially important to begin by stressing that the goals of advance care planning are to know what the patient wants and to respect the patient s choices whenever possible In this circumstance it is important to first elicit the patient s concerns fears and thoughts It then becomes possible to determine the willingness of the patient to participate in advance care planning and what fears or barriers need to be discussed While advance care planning in this situation may not allow for a complete ideal process initiating the conversation at least allows the patient to express some 2007 Gundersen Lutheran Medical Foundation Inc E1 goals values and beliefs that may prove invaluable should the patient become incapable and decisions need to be made on his or her behalf The following should be considered in advance care planning discussions with this group of adults 1 Assess patients understanding of their medical conditions Address any fears concerns misunderstandings or gaps in knowledge that might create barriers to planning 2 Determine whom patients would want to make decisions for them in case they would be unable to speak for themselves Designation of surrogate decision makers should be determined and documented Then even in the absence of a formal advance directive appropriate decision makers have been identified 3 Include surrogate decision makers in advance care planning discussions whenever possible 4 Determine outcomes that patients would consider desirable and undesirable This discussion may focus on scenarios of particular concern given patients medical conditions For example patients who face a real possibility of a new stroke might need to explore how bad such an event would need to be for them to reconsider their goals of care Advance Care Planning for NeverCompetent Adult Patients and Minors with Progressive Fatal Conditions Advance care planning is typically considered an activity reserved for capable adults This concept stems from the fact that only competent adults can sign a legal advance directive document eg living will or power of attorney for healthcare and from the view that advance care planning is based on the principle of autonomy and the right to refuse medical treatment While it is true that only competent adults can use such legal documents and exercise selfdetermination that does not mean that planning for future healthcare decisions is unimportant or unnecessary for minors or for nevercompetent adults Planning for these patients becomes important when they live with or develop conditions that will progressively get worse over time and are clearly fatal In such cases planning is appropriately based on an ethics of care with a goal of providing the best care possible Advance care planning is never appropriate in these patients when their conditions are stable simply because of a perceived poor quality of life In these situations parents or legal guardians typically will participate in the planning process These surrogates should be made fully aware of their authority or lack of authority to forgo medical treatment for these patients In the case of minors and nevercompetent adults it is important to recognize that the basis of the plan is not individual autonomy Rather than the patient s values goals or preferences E2 2007 Gundersen Lutheran Medical Foundation Inc the plan is based on the prognosis of the illness and on the bene ts and burdens of the treatment The Child Abuse Prevention and Treatment Act of 1984 the socalled Baby Doe regulations establishes a framework for determining when medical treatment might be forgone in the case of minors or nevercompetent adults Based on a clinical interpretation of these regulations treatment may be withheld for those who are chronically and irreversibly unconscious those who are imminently dying no matter what treatment is provided futile care and those who may survive for weeks or months with treatment virtually futile care but the treatment would be inhumane creating significant suffering and or distress for the patient It is important to emphasize that advance care planning does not lead directly to withdrawal of all care On the contrary advance care planning involves considering what treatments will allow the patient to live as long as possible and as well as possible without subjecting the patient to treatments that have little or no chance of extending life or extend life in a way that creates real significant suffering for the patient For example it might be reasonable to continue treatments such as artificial nutrition and hydration antibiotic treatments for infections and so forth but not to attempt CPR in the event of cardiopulmonary arrest A thoughtful plan would indicate specifically what the goals of care are and identify what types of treatments will assist in achieving these goals The purpose for this type of planning is to help parents and legal guardians anticipate expected serious future medical decisions and to ensure that these plans are communicated to health professionals who may care for the patient at some future time Parents and legal guardians who make such medical decisions often are faced with frequent admissions to the hospital for their child or ward and having to discuss the care plan with new staff at each admission can be frustrating Furthermore waiting until the middle of an acute crisis to address serious decisions is frankly unwise for everyone involved Developing a written plan in consultation with a primary physician has many advantages It can help parents communicate the plan for future medical care for their child more easily and initiating this type of discussion at a time of noncrisis gives parents time to weigh important emergency decisions It also allows parents who are at different stages of acceptance about lifesustaining decisions to come to a consensus If planning is started early parents can talk and work through differences in their own way in their own time As with all planning rapport must be established It is especially important to emphasize that the goal of the questions you ask and the concerns you raise is to provide the best patient care It must be clear that engaging in advance care planning discussions does not re ect a disregard for patients or a judgment about their quality of life nor does advance care planning lead to an abandonment of the patient The question that must be answered is how given their situations can we best show our regard and love for them 2007 Gundersen Lutheran Medical Foundation Inc E3 Planning in these cases must start with a clear understanding of medical conditions and their potential complications Parents and legal guardians must understand what lifethreatening events are likely to occur e g pneumonia or respiratory failure and anticipate medical emergencies The benefits and burdens of various lifesustaining treatments should be assessed and explored At times decisions can be made to withhold treatment or to start timelimited trials Many parents and guardians will need considerable time to re ect on these issues which is why it is important to start these discussions months in advance of anticipated medical crises Most parents and guardians will come to some plan that outlines what is desired and what is not Some parents may never be able to limit treatment even though it may cause great harm with little benefit to the patient Even in these situations knowing how a parent thinks helps undertake treatment in a more orderly less stressful way than having a serious con ict with the parent in the midst of a medical crisis Documenting plans for future medical care for minors or nevercompetent adults is a critical step to ensuring that plans are recognized and respected by all treating physicians A system must be established to record care plans to ensure that plans are readily accessible and to ensure that treating physicians in the acute setting will read and incorporate plans into their decisions In La Crosse we use any of several documents to record a plan One document we use frequently is the Physician Orders for LifeSustaining Treatment POLST This document provides the type of detail helpful in many cases and allows documentation of preferences for medical care that may be highly desired such as nutritional support The POLST form functions as a medical order for children being cared for in their homes or for others in residential facilities The POLST allows use of emergency services without fear of losing complete control of the medical care during a crisis The other format that we have used is a letter signed by the parents primary physician and chair of the ethics committee This letter typically has three paragraphs The first states the diagnosis and expected prognosis of the patient The second states the goals for treatment which treatments are desired which should be withheld and why The third reviews the human struggles involved in making these decisions the rationale for the decisions made and typically requests that all health professionals respect the plan of care described in the letter Both of these types of plans are recognized by institutional policy The advance care planning letter is filed in the patient s chart like any adult advance directive and the POLST form is given to the parents or legal guardian to take home with them or to provide to the facility where the ward resides The number of such advance directives for children or nevercompetent adults is small Nevertheless they can greatly assist with decision making help ensure that treatment needed is provided avoid unwanted treatment in a timely fashion and help the parents or legal E4 2007 Gundersen Lutheran Medical Foundation Inc guardians prepare for a more meaningful death when that time comes In this way good advance care planning supports good palliative and hospice care Previously Capable but Now lncompetentllncapable Adults Advance care planning for this category of adults is uniquely challenging While these adults have not created an advance directive when capable they may have at some point expressed preferences about medical treatment or about what is important in their lives This type of advance care planning begins with quality discussions with the patient s surrogate who may be a legal guardian or next of kin Including other loved ones in these discussions can be very helpful in building consensus It is important to first assess what the surrogate knows about the patient s values previously stated goals and preferences It is important to explore the meaning context and validity of stories statements and other information about the patient s preferences gathered from these sources While asking questions may feel uncomfortable it is important that we know what the patient actually said For example a daughter s statement I know Dad wouldn t want this treatment should be explored to elicit more information about why she believes her father would feel this way Ideally through this process we can ascertain the oral directives of the patient and then help the surrogate to formulate these into a written plan This plan could be written as a type of instructive directive or letter signed by the surrogate If the plan must be converted to medical orders a POLST form or similar system of medical orders should be used When the preferences and values of the patient cannot be determined we are forced to make decisions based on prognosis and an analysis of benefits and burdens of treatment 2007 Gundersen Lutheran Medical Foundation Inc E5 Ep ogue FURTHER READING Berg S 2006 In their own voices Families discuss endoflife decision making Part 2 see comment Pediatric Nursing 323 238242 Berger J T 2005 Patients interests in their family members Wellbeing An overlooked fundamental consideration within substituted judgments Journal of Clinical Ethics 1 61 3 10 Briggs L A Kirchhoff K T Hammes B J Song M K amp Colvin E R 2004 Patient centered advance care planning in special patient populations A pilot study Journal of Professional Nursing 201 4758 The SUPPORT principal investigators 1995 A controlled trial to improve care for seriously ill hospitalized patients The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments SUPPORT see comment erratum appears in 1996 JAM4 27516 1232 JAM439 The Journal of the American Medical Association 27420 15911598 Ewanchuk M amp Brindley P G 2006 Perioperative donotresuscitate orders doing nothing when something can be done Critical Care London Englana 104 219 Fins J J Maltby B S Friedmann E Greene M G Norris K Adelman R et al 2005 Contracts covenants and advance care planning An empirical study of the moral obligations of patient and proxy Journal of Pain amp Symptom Management 291 5568 Fried T R Bradley E H Towle V R amp Allore H 2002 Understanding the treatment preferences of seriously ill patients see comment New England Journal of Medicine 34614 10611066 Friedman S L 2006 Parent resuscitation preferences for young people with severe developmental disabilities Journal of the American Medical Directors Association 72 6772 Hammes B J Klevan J Kempf M amp Williams M S 2005 Pediatric advance care planning Journal of Palliative Medicine 84 766773 Harvey M 2006 Advance directives and the severely demented Journal of Medicine amp Philosophy 311 4764 Lightfoot L 2005 The ethical health lawyer incompetent decisionmakers and Withdrawal of lifesustaining treatment A case study Journal of Law Medicine amp Ethics 334 85 1856 Sehgal A Galbraith A Chesney M Schoenfeld P Charles G amp Lo B 1992 How strictly do dialysis patients Want their advance directives followed JAJWI Journal of the American Medical Association 2671 5963 E6 2007 Gundersen Lutheran Medical Foundation Inc Song M K amp De Vito Dabbs A J 2006 Advance care planning after lung transplantation A case of missed opportunities Progress in Transplantation 163 222225 Song M K Kirchhoff K T Douglas J Ward S amp Hammes B 2005 A randomized controlled trial to improve advance care planning among patients undergoing cardiac surgery Medical Care 4310 10491053 Child Abuse and Neglect Prevention and Treatment Final Rule 45 CFR 1340 Federal Register 72 1488792 1985 2007 Gundersen Lutheran Medical Foundation Inc E7 E8 2007 Gundersen Lutheran Medical Foundation Inc Advance Care Planning Services Gundersen Lutheran Medical Foundation Inc 1900 South Avenue ALEX La Crosse WI 54601 Phone 6087754747 Tollfree 8003629567 Ext 54747 WWWrespectingchoicesorg