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bente hindriks

bente hindriks

Description

School: University of Toledo
Department: Philosophy
Course: Medical Ethics
Professor: John edinger
Term: Summer 2015
Tags: philosophy, medical, ethics, infants, and impaired
Cost: 25
Name: PHIL3370 Ch 6
Description: These notes go over everything in the required reading. All sections are included and I tried to be as detailed as possible without taking up to many pages.
Uploaded: 03/02/2017
20 Pages 107 Views 0 Unlocks
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o Loves him, but “There is no need for anyone to suffer like this” ∙ Who decides if a child is saved or not?




∙ Where is the cutoff for personhood?




o Loves him, but “There is no need for anyone to suffer like this” ∙ Who decides if a child is saved or not?



Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants Bente Hindriks ∙ Diagnosed at birth with rare genetic disorder, Hallopeau-Siemens syndrom o Collagen fibers that anchor epidermis to dermis arDon't forget about the age old question of first city bank pays 8 percent simple interest on its savings account balances, whereas second city bank pays 8 percent interest compounded annually.
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We also discuss several other topics like stephanie chawla
We also discuss several other topics like How is information transmuted?
Don't forget about the age old question of the most important factor determining the number of deaths globally due to natural disasters is
Don't forget about the age old question of How the nervous system carries out tasks?
e defective o Large blisters, excruciating pain o Skin tears, infections o Lining of mouth and esophagus tear, must be fed through surgically  implanted gastric tube o Blindness can result also ∙ May live 3 or 4 years, milder forms for 9-10 ∙ Constant pain, eventually die of skin cancer ∙ Extreme suffering, uncontrollable shrieking, high blood pressure, rapid pulse,  fast breathing ∙ Similar to signs of distress and pain in children and adults ∙ Similar judgments used to determine animal pain ∙ Netherlands, Groningen University Medical Center, pediatrician, Eduard  Verhagen ∙ Even powerful painkillers had no effect ∙ Bandage raw flesh, changing bandages causes new tears ∙ Parents wanted to end her suffering, doctors powerless to act, risk of criminal  prosecution ∙ Most babies with fatal disorders are made comfortable until their death;  Bente could not be made comfortable ∙ Parents thought about ending her life themselves o In the end, large dose of morphine, ease pain, probably helped hasten  death ∙ Officially died of natural causes ∙ Probably common throughout world to use large doses of morphine in this  way, but secret, grey legal area, never discussed openly Extreme Prematurity ∙ Jan Anderson, labor at 23 weeks, Aaron weighed 750 grams, about 1.5  pounds ∙ Neonatal intensive-care unit o Monitors, intravenous lines, respirator o Siphoning mucus from mouth and underdeveloped lungs ∙ 4 months in hospital ∙ Permanent disabilities: quadriplegic, virtually blind, cerebral palsy, perhaps  mentally impaired ∙ 400,000 babies born at least 6 weeks premature each year∙ 62,000 weigh less than 1600 grams (3.5 pounds) ∙ In US: 1000 preterm babies born each day, preterm birthrate increased  around 20% from 1990-2006 ∙ 13% of all birth preterm ∙ New procedures, new drugs, 85% of premature infants live long enough to  leave the hospital (most return) o Only about 20% have no lasting major physical or mental impairment ∙ Half of premature infants in 500 to 700 gram (1 to 1.5 pound) range fail to  survive.  ∙ 25-33% of babies under 750 grams have irreversible neurological damage ∙ Rises to 40-50% for birth weight between 500 and 600 grams o 5-10% have cerebral palsy, similar % have IQs below 70 ∙ Tech limit for saving premature lives is about 23-24 weeks ∙ Premature girls have 1 week development advantage over boys; black infants have same advantage over white infants ∙ Extremely premature = “fetal infants” ∙ All premature = not enough time developing in the uterus ∙ Many problems o Eating, digesting food, absorbing nutrients o Lungs small and brittle, fill up with secretions, mechanical respirator,  respiratory infections o Cerebral hemorrhages, “brain bleeds” o Seizures, blindness, low vision, deafness, mental handicap, subtle  mental difficulties that may only show up years later ∙ 70% of babies in 500 to 900 g range now survive o Before 1970s, before NICUs, under 900 g had almost no chance ∙ 80s and 00s, survival rate rose 50% ∙ Technology and tests much better now ∙ Corticosteroids can speed up fetal development in uterus ∙ Need for NICUs has increased ∙ No prenatal care, drug users ∙ 2006 Canadian study, 166 babies, 1977 to 1982, 1.1 to 2.2 pounds, 145  normal weight babies o High school grads similar, lower percentage went to college o Same proportion full/part time employment o Males had lower survival rates, did less well in school, higher  percentages of neurological difficulties o 94% white, 82% from 2 parent families o Canadian medical system provides care for everyone, infants get best  treatments ∙ 2005 US study, 219 premature children (2.2 pounds or less), 1992-1995,  Cleveland’s Children’s Hospital o 70% survived, vs. 50% in 70s o Just as likely to suffer serious disabilities o 38% had IQs less than 85 (14% normal) o 21% had asthma (9% normal)o Cerebral palsy, hearing and vision difficulties, social difficulties, poor  school performance o 61% African Americans from poor, inner-city families o US healthcare system does not provide for everyone like Canada’s ∙ Study in 2000, 150 babies, 1977-1982 o Age 8, 50% receive special education (10% normally) o 25%, compared with 6%, had repeated a grade o Less than half scored normal range on intelligence and achievement  testes o 150 teens, 42 had neurological or sensory disorders o Significantly lower on tests for such disorders than control group o Rated quality of life as high as comparison group ∙ Keep premature alive costs $5000-8000 per day ∙ Weeks or months in NICU ∙ Bills approaching $1 million ∙ Least likely to benefit from the care ∙ Taxes used to pay for most of this, federal and state funded Medicaid ∙ Costs 3 times more to care for infant under 750 g than serious burns ∙ Costs 20% more than for heart transplant surgery ∙ Spend more on very young than on the very old, a group often used to  discuss medical costs ∙ Should they be treated at all? o Some: we have a moral obligation to treat all infants, no matter the  risks or chances o Others: outcome so grim we have a moral obligation to not treat o “We generally keep them warm and let them expire by themselves.  These are not viable babies, and it’s crazy to do anything more.”  (under 500g) o US hospitals, try to save infants as young as 22 weeks o Most European hospitals require min of 26 weeks ∙ Many parents say they were never consulted, physicians just treat without  talking to them ∙ Jane Anderson, Aaron’s mother, asked to turn off ventilator twice ∙ No one even discussed the possibility ∙ Doctor screamed at her ∙ 4 months in hospital, went home, quadriplegic, cerebral palsy, perhaps  permanent mental handicap o Loves him, but “There is no need for anyone to suffer like this” ∙ Who decides if a child is saved or not? Baby Owens ∙ 1976, Dr. Joan Owens went to hospital to check on patients, was pregnant ∙ Went into labor, gave birth to 4.5 baby girl, Baby Owens ∙ Saw that it had Down syndrome, asked obstetrician to check o “Get rid of it. I don’t want a mongoloid child.”∙ Had duodenal atresia, small intestine failed to develop, easy surgical  procedure o Refused to consent to surgery ∙ Ziner, direct Felix Entragla, Isaac Putnam of legal staff, discussed case for 2  hours o Court forced blood transfusions and immunization despite parental  religious beliefs ∙ Not the same case ∙ Decided could not compel parents ∙ Took 12 days for Baby Owens to die o Lips moistened with water to lessen suffering, in small room alone, off  to side ∙ Many physicians avoided the child, nurses had to attend to it, resentful Baby Doe Cases ∙ Bloomington, Indiana, 1982, child born with Down syndrome and esophageal  atresia o Parents and physician decided against surgery needed to open  esophagus o Upheld in courts, 6 days later died of starvation ∙ Month later, May 1982, secretary of Health and Human Services (HHS)  notified that institution receiving federal funds can’t lawfully withhold  treatment from handicapped infant ∙ 2 months later, under Reagan, hospitals had to display poster in NICUs with  hotline to call to stop discrimination against handicapped infants o American Academy of Pediatrics brought suit against it ∙ Judge Gerhard Gesell of US District Court ruled HHS had not followed proper  procedures, no notifying or consulting ∙ “sudden descent of Baby Doe squads” ∙ HHS wrote 2 more versions, all fought against Baby Jane Doe, October 11, 1983, in Long Island ∙ Meningomyelocele, anencephaly, and hydrocephaly ∙ Without surgery, live 2 weeks to 2 years; with, might survive 20 years ∙ Severely mentally handicapped, epileptic, paralyzed, constant urinary and  bladder infections ∙ Consulted with neurologists, Roman Catholic priest, nurses, social workers;  decided to not have surgery ∙ Lawrence Washburn, Jr., lawyer initiated lawsuits on behalf of unborn and  impaired, learned about it ∙ Judge ruled infant needed surgery ∙ Reversed on appeal: parents’ decision in best interest, Washburn not related o Right to privacy ∙ June 1985, SCOTUS agreed to hear the case o May 15, 1985, final Baby Doe regulation came into effecto June 9, 1986, SCOTUS in 5-to-3 (1 abstention) struck down Baby Doe  regulations o No evidence of discrimination against impaired infants o No basis of fed investigation Baby K ∙ Born 1993, Virginia ∙ Anencephaly, brain lacked both cerebral hemispheres, never form even  rudimentary thought, only brain stem intact ∙ Standard treatment: kept comfortable, nourishment, until organs fail and they die o Few hours, days, weeks ∙ Remained alive longer, mother’s insistence that respiratory crises treated  aggressively with mechanical ventilator ∙ Christian faith in all life being sacred ∙ 16 months, extended care facility, constant attention ∙ Fed district court, seek ruling to refuse care ∙ Ruling appealed by hospital to US Court of Appeals ∙ Ruled 2-to-1 by 1986 Federal Emergency Medical Treatment Active Labor Act  that they had to provide treatment ∙ Act was anti-dumping, to keep private hospitals from dumping poor,  uninsured with emergency problems on public hospitals ∙ First time used in this way, in this case, mother fully insured Genetic and Congenital Impairments ∙ Genetic: mutation and/or inheritance in genetic code o Some single-gene defects, others combos ∙ Congenital errors: misleading term, but tends to mean developmental errors o Not original genetic code, but either genetic damage or reading the  code o Radiation, drugs, chemicals, nutritional deficiencies, viruses and  spirochetes o Specific Impairments Down Syndrome ∙ Chromosomal disorder, identified in 1866 by English physician, J. L. H. Down ∙ 23 pairs of chromosomes, extra chromosome at 21, trisomy 21, triad instead  of pair ∙ Can also be when string of chromosomes twisted and pair 21 sticks to  number 15 ∙ Not wholly understood why this causes the syndrome ∙ Mental handicap and physical abnormalities ∙ 1 out of every 800 births ∙ Age of mother effects it ∙ Young women: 1 in every 2000 ∙ Over 40, 1 in 100∙ Over 50, 1 in 12 ∙ No cure, IQ of 50-80, can learn basic tasks and routines, live semi independent lives ∙ Seem quite happy ∙ Heart abnormalities, die in 20s and 30s ∙ Now can live in 50s and beyond ∙ In US, expectancy is 56 Spina Bifida ∙ Opening in the spine, fails to fuse properly  ∙ Membrane able to protrude outside ∙ Bulging, thin sac with fluid and nerve tissue ∙ Some forms very severe ∙ Treated surgically, close over opening, remove sac, graft skin, infection  possible ∙ Bones thin and brittle, muscles weak ∙ Virtually always paralyzed to some extent, below waist ∙ Bladder infections common ∙ 1 in 1000 births, 2000 babies a year ∙ Among whites, 3 times higher in families of low socioeconomic status; rate in  black people less than half than among white ∙ 1994, fed government require folic acid added to enriched grain products o 2005 study, significant decrease o Folic acid B vitamin, not sure how helps Hydrocephaly ∙ “Water on the brain” ∙ Flow of fluid down spinal column blocked, builds up in brain, can cause brain  damage ∙ Shunt used to drain fluid, physical and mental damage frequent Anencephaly ∙ “without brain,” invariably fatal, cerebral hemispheres totally absent ∙ Related to spina bifida ∙ Never hope of improvement  Esophageal atresia ∙ Forms without opening, or does not extend to stomach ∙ Corrected with surgery, success very high Duodenal Atresia ∙ Upper part of small intestine, duodenum closed off, food cannot pass through ∙ Surgery successful in most cases ∙ Born after 26 weeks typically fail to live∙ Half of those 1 to 1.5 pounds fail to survive, those who do have multiplicity of problems o Underdeveloped lungs, cerebral hemorrhages, seizures, blindness,  deafness, mental handicap, less noticeable disabilities Testing for Impairment ∙ Amniocentesis and CVS ∙ Amniocentesis: amnion, membrane surrounding fetus, punctured with needle, amniotic fluid sampled o 14 to 16 weeks o Small risk, less than 1%, miscarriage 1 on 200 o 11 to 12 weeks, small increase in probability of deformed foot ∙ Chorionic villus sampling (CVS): hair-like villi cells from placenta gathered o 6 to 10 weeks, as safe as Amniocentesis  o 0.03% risk of missing or undeveloped fingers or toes, finding  questioned ∙ Amniocentesis used in early 60s, mostly for Rh incompatibility ∙ Neither routine procedures b/c slight hazards ∙ Alphafetoprotein o Test for Down syndrome o Blood sample, presence/absence of 3 fetal proteins show likelihood o Blood test can also indicate likelihood for spina bifida, ultrasounds then used ∙ New noninvasive tests o 3 noninvasive tests at 11 to 13 weeks, 87% accurate for Down  syndrome o Second ultrasound to detect fetal nasal bone, goes up to 97% ∙ 200,000 infants a year require neonatal care Ethics of Birth Impairments ∙ Should they receive ordinary care, special efforts? No care and allowed to  die? Killed in merciful manner? Who decides? What rubrics? Status of newborn ∙ Is it a person? ∙ What is a person? ∙ Is a severely mentally handicapped newborn a person? ∙ Not clear what makes someone a person or a nonperson o Rational decision making ability? Self-awareness? Abstract thought?  Lived experience of any form? ∙ Where is the cutoff for personhood? Reading: The Groningen Protocol: The Why and the What James Lemuel Smith∙ The author describes the problem faced by Dutch pediatrician Eduard  Verhagen of dealing with infants who have a hopeless prognosis and  intractable pain.  ∙ Smith then presents the scheme for classifying infants with serious medical  problems into three categories and the five conditions for legitimizing active  infant euthanasia that make up the Groningen Protocol as developed by  Verhagen and his collaborator Pieter Sauer. Section 2: The Ashley Treatment ∙ The Case of Ashley explores a set of ethical issues parallel to those raised by  premature infants. Though born normally, Ashley began to develop in many  of the abnormal ways that commonly result from premature birth.  ∙ The Ashley case raises the question of what criteria should be used to make  decisions about problems that arise as impaired children grow.  ∙ For example, as Ashley matured, she would begin to menstruate. Should this be allowed to occur normally or, given her impaired condition, was it  reasonable, as her parents believed, to intervene and prevent the menstrual  cycle from occurring to spare her the discomforts, which can accompany it?  ∙ This first article describes the parents view of physical treatments of Ashley  which they thought justified. The second offers a detailed analysis of ethical  issues raised by the Ashley treatment, casting doubt on some of the parents’  decisions. Reading: The “Ashley Treatment” Ashley’s Mom and Dad ∙ The young girl known only as Ashley had an apparently normal birth, but she  appears to have suffered damage to her brain from an unknown cause.  ∙ Her mental and motor faculties have failed to develop, and as a result, she is  completely dependent on others for her care.  ∙ Although the growth of her body was proceeding along a normal  developmental path, her mental and motor functions would never improve.  ∙ Her parents, who identify themselves only as “Ashley’s Mom and Dad,” argue  on their blog about their daughter that the medical procedures they  requested on the behalf of Ashley when she was nine (“the Ashley  treatment”) were all intended to improve the quality of her life, not that of  their own as caretakers. ∙ With or without the treatment, the parents claim, their intention has always  been to keep Ashley at home. The growth attenuation by hormone injections  will keep her small enough to ensure that she is frequently moved to be with  the other family members and the surgery to remove her uterus and breast  buds will prevent menstrual cramps and the breast discomfort caused by  lying down most of the time.  ∙ The surgeries, including a preventive appendectomy, will also spare Ashley  the dangers of breast and uterine cancer and unrecognized appendicitis. The  Ashley treatment, her parents argue, is in her best interest and will improve  the quality of her life.Reading: The Ashley Treatment: Best Interests, Convenience, and Parental Decision-Making S. Matthew Liao, Julian Savulescu, and Mark Sheehan ∙ The authors argue that although growth attenuation in a severely disabled  child like Ashley may be justifiable, hysterectomy and the surgical removal of  breast buds are not.  ∙ Small size could be in Ashley’s best interest, permitting her family to care for  her at home. If the attenuation also promotes the interest of her parents, that should not count against it.  ∙ Moral obligations do not typically require large sacrifices of health and all  others interests and duties. The benefit to Ashley of the removal of her uterus and breast buds, by contrast, is not as clear, and harms are more likely.  ∙ Less invasive ways of protecting against cramps and the discomforts of  having breasts might be found, and the risks of cancer and sexual abuse  seem too unlikely to justify surgery.  ∙ The authors also reject the argument that an immature body is more in  keeping with Ashley’s mental age and will give her greater dignity. ∙ Finally, the authors encourage us to see that the right to be loved and cared  for that Ashley shares with other children, disabled people, and the elderly  should be recognized by society and supported by every able person by  paying taxes and voting for policies that help parents and other caregivers. Reading: Examination of Arguments in Favor of Withholding Ordinary  Medical Care from Defective Infants John A. Robertson ∙ John Robertson defends a conservative natural law position in criticizing two  arguments in favor of withholding “necessary but ordinary” medical care from impaired infants.  ∙ He rejects the claim made by Michael Tooley that infants are not persons and  argues that, on the contrary, there is no non-arbitrary consideration that  requires us to protect the past realization of conceptual capability but not its  potential realization. ∙ The second argument that Robertson considers is one to the effect that we  have no obligation to treat defective newborns when the cost of doing so  greatly outweighs the benefits (a utilitarian argument).  ∙ In criticism, Robertson claims that we have no way of judging this. Life itself  may be of sufficient worth to an impaired person to offset his or her suffering, and the suffering and cost to society are not sufficient to justify withholding  care. Reading: Ethical Issues in Aiding the Death of Young Children H. Tristram Engelhardt, Jr. ∙ The author contends that children are not persons in the full sense.∙ They must exist in and through their families. Thus, parents, in conference  with a physician who provides information, are the appropriate ones to decide whether to treat an impaired newborn when  ∙ there is not only little likelihood of a full human life but also the likelihood of  suffering if the life is prolonged and the cost of prolonging the life is very  great. ∙ Engelhardt further argues that it is reasonable to speak of a duty not to treat  an impaired infant when this will only prolong a painful life or would only lead  to a painful death.  ∙ He bases his claim on the legal notion of a “wrongful life.” This notion  suggests that there are cases in which nonexistence would be better than  existence under the conditions in which a person must live.  ∙ Life can thus be seen as an injury, rather than as a gift. Right to Life of the Handicapped Alison Davis ∙ Davis argues, from her experience as a handicapped person, against allowing doctors, within the first 28 days of the life of a severely disabled infant, to  predict the infant’s quality of life and decide the course of treatment on the  basis.  ∙ Davis points out that the prediction for her would have been a life without  worthwhile quality, a prediction wholly at odds with her own experience of  life.  ∙ She rejects the notion of non-personhood during the first four weeks of life  and expresses the fear that following predictions made during that period to  justify non-treatment would lead to the decriminalization of killing  handicapped people at later ages.Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants Bente Hindriks ∙ Diagnosed at birth with rare genetic disorder, Hallopeau-Siemens syndrom o Collagen fibers that anchor epidermis to dermis are defective o Large blisters, excruciating pain o Skin tears, infections o Lining of mouth and esophagus tear, must be fed through surgically  implanted gastric tube o Blindness can result also ∙ May live 3 or 4 years, milder forms for 9-10 ∙ Constant pain, eventually die of skin cancer ∙ Extreme suffering, uncontrollable shrieking, high blood pressure, rapid pulse,  fast breathing ∙ Similar to signs of distress and pain in children and adults ∙ Similar judgments used to determine animal pain ∙ Netherlands, Groningen University Medical Center, pediatrician, Eduard  Verhagen ∙ Even powerful painkillers had no effect ∙ Bandage raw flesh, changing bandages causes new tears ∙ Parents wanted to end her suffering, doctors powerless to act, risk of criminal  prosecution ∙ Most babies with fatal disorders are made comfortable until their death;  Bente could not be made comfortable ∙ Parents thought about ending her life themselves o In the end, large dose of morphine, ease pain, probably helped hasten  death ∙ Officially died of natural causes ∙ Probably common throughout world to use large doses of morphine in this  way, but secret, grey legal area, never discussed openly Extreme Prematurity ∙ Jan Anderson, labor at 23 weeks, Aaron weighed 750 grams, about 1.5  pounds ∙ Neonatal intensive-care unit o Monitors, intravenous lines, respirator o Siphoning mucus from mouth and underdeveloped lungs ∙ 4 months in hospital ∙ Permanent disabilities: quadriplegic, virtually blind, cerebral palsy, perhaps  mentally impaired ∙ 400,000 babies born at least 6 weeks premature each year∙ 62,000 weigh less than 1600 grams (3.5 pounds) ∙ In US: 1000 preterm babies born each day, preterm birthrate increased  around 20% from 1990-2006 ∙ 13% of all birth preterm ∙ New procedures, new drugs, 85% of premature infants live long enough to  leave the hospital (most return) o Only about 20% have no lasting major physical or mental impairment ∙ Half of premature infants in 500 to 700 gram (1 to 1.5 pound) range fail to  survive.  ∙ 25-33% of babies under 750 grams have irreversible neurological damage ∙ Rises to 40-50% for birth weight between 500 and 600 grams o 5-10% have cerebral palsy, similar % have IQs below 70 ∙ Tech limit for saving premature lives is about 23-24 weeks ∙ Premature girls have 1 week development advantage over boys; black infants have same advantage over white infants ∙ Extremely premature = “fetal infants” ∙ All premature = not enough time developing in the uterus ∙ Many problems o Eating, digesting food, absorbing nutrients o Lungs small and brittle, fill up with secretions, mechanical respirator,  respiratory infections o Cerebral hemorrhages, “brain bleeds” o Seizures, blindness, low vision, deafness, mental handicap, subtle  mental difficulties that may only show up years later ∙ 70% of babies in 500 to 900 g range now survive o Before 1970s, before NICUs, under 900 g had almost no chance ∙ 80s and 00s, survival rate rose 50% ∙ Technology and tests much better now ∙ Corticosteroids can speed up fetal development in uterus ∙ Need for NICUs has increased ∙ No prenatal care, drug users ∙ 2006 Canadian study, 166 babies, 1977 to 1982, 1.1 to 2.2 pounds, 145  normal weight babies o High school grads similar, lower percentage went to college o Same proportion full/part time employment o Males had lower survival rates, did less well in school, higher  percentages of neurological difficulties o 94% white, 82% from 2 parent families o Canadian medical system provides care for everyone, infants get best  treatments ∙ 2005 US study, 219 premature children (2.2 pounds or less), 1992-1995,  Cleveland’s Children’s Hospital o 70% survived, vs. 50% in 70s o Just as likely to suffer serious disabilities o 38% had IQs less than 85 (14% normal) o 21% had asthma (9% normal)o Cerebral palsy, hearing and vision difficulties, social difficulties, poor  school performance o 61% African Americans from poor, inner-city families o US healthcare system does not provide for everyone like Canada’s ∙ Study in 2000, 150 babies, 1977-1982 o Age 8, 50% receive special education (10% normally) o 25%, compared with 6%, had repeated a grade o Less than half scored normal range on intelligence and achievement  testes o 150 teens, 42 had neurological or sensory disorders o Significantly lower on tests for such disorders than control group o Rated quality of life as high as comparison group ∙ Keep premature alive costs $5000-8000 per day ∙ Weeks or months in NICU ∙ Bills approaching $1 million ∙ Least likely to benefit from the care ∙ Taxes used to pay for most of this, federal and state funded Medicaid ∙ Costs 3 times more to care for infant under 750 g than serious burns ∙ Costs 20% more than for heart transplant surgery ∙ Spend more on very young than on the very old, a group often used to  discuss medical costs ∙ Should they be treated at all? o Some: we have a moral obligation to treat all infants, no matter the  risks or chances o Others: outcome so grim we have a moral obligation to not treat o “We generally keep them warm and let them expire by themselves.  These are not viable babies, and it’s crazy to do anything more.”  (under 500g) o US hospitals, try to save infants as young as 22 weeks o Most European hospitals require min of 26 weeks ∙ Many parents say they were never consulted, physicians just treat without  talking to them ∙ Jane Anderson, Aaron’s mother, asked to turn off ventilator twice ∙ No one even discussed the possibility ∙ Doctor screamed at her ∙ 4 months in hospital, went home, quadriplegic, cerebral palsy, perhaps  permanent mental handicap o Loves him, but “There is no need for anyone to suffer like this” ∙ Who decides if a child is saved or not? Baby Owens ∙ 1976, Dr. Joan Owens went to hospital to check on patients, was pregnant ∙ Went into labor, gave birth to 4.5 baby girl, Baby Owens ∙ Saw that it had Down syndrome, asked obstetrician to check o “Get rid of it. I don’t want a mongoloid child.”∙ Had duodenal atresia, small intestine failed to develop, easy surgical  procedure o Refused to consent to surgery ∙ Ziner, direct Felix Entragla, Isaac Putnam of legal staff, discussed case for 2  hours o Court forced blood transfusions and immunization despite parental  religious beliefs ∙ Not the same case ∙ Decided could not compel parents ∙ Took 12 days for Baby Owens to die o Lips moistened with water to lessen suffering, in small room alone, off  to side ∙ Many physicians avoided the child, nurses had to attend to it, resentful Baby Doe Cases ∙ Bloomington, Indiana, 1982, child born with Down syndrome and esophageal  atresia o Parents and physician decided against surgery needed to open  esophagus o Upheld in courts, 6 days later died of starvation ∙ Month later, May 1982, secretary of Health and Human Services (HHS)  notified that institution receiving federal funds can’t lawfully withhold  treatment from handicapped infant ∙ 2 months later, under Reagan, hospitals had to display poster in NICUs with  hotline to call to stop discrimination against handicapped infants o American Academy of Pediatrics brought suit against it ∙ Judge Gerhard Gesell of US District Court ruled HHS had not followed proper  procedures, no notifying or consulting ∙ “sudden descent of Baby Doe squads” ∙ HHS wrote 2 more versions, all fought against Baby Jane Doe, October 11, 1983, in Long Island ∙ Meningomyelocele, anencephaly, and hydrocephaly ∙ Without surgery, live 2 weeks to 2 years; with, might survive 20 years ∙ Severely mentally handicapped, epileptic, paralyzed, constant urinary and  bladder infections ∙ Consulted with neurologists, Roman Catholic priest, nurses, social workers;  decided to not have surgery ∙ Lawrence Washburn, Jr., lawyer initiated lawsuits on behalf of unborn and  impaired, learned about it ∙ Judge ruled infant needed surgery ∙ Reversed on appeal: parents’ decision in best interest, Washburn not related o Right to privacy ∙ June 1985, SCOTUS agreed to hear the case o May 15, 1985, final Baby Doe regulation came into effecto June 9, 1986, SCOTUS in 5-to-3 (1 abstention) struck down Baby Doe  regulations o No evidence of discrimination against impaired infants o No basis of fed investigation Baby K ∙ Born 1993, Virginia ∙ Anencephaly, brain lacked both cerebral hemispheres, never form even  rudimentary thought, only brain stem intact ∙ Standard treatment: kept comfortable, nourishment, until organs fail and they die o Few hours, days, weeks ∙ Remained alive longer, mother’s insistence that respiratory crises treated  aggressively with mechanical ventilator ∙ Christian faith in all life being sacred ∙ 16 months, extended care facility, constant attention ∙ Fed district court, seek ruling to refuse care ∙ Ruling appealed by hospital to US Court of Appeals ∙ Ruled 2-to-1 by 1986 Federal Emergency Medical Treatment Active Labor Act  that they had to provide treatment ∙ Act was anti-dumping, to keep private hospitals from dumping poor,  uninsured with emergency problems on public hospitals ∙ First time used in this way, in this case, mother fully insured Genetic and Congenital Impairments ∙ Genetic: mutation and/or inheritance in genetic code o Some single-gene defects, others combos ∙ Congenital errors: misleading term, but tends to mean developmental errors o Not original genetic code, but either genetic damage or reading the  code o Radiation, drugs, chemicals, nutritional deficiencies, viruses and  spirochetes o Specific Impairments Down Syndrome ∙ Chromosomal disorder, identified in 1866 by English physician, J. L. H. Down ∙ 23 pairs of chromosomes, extra chromosome at 21, trisomy 21, triad instead  of pair ∙ Can also be when string of chromosomes twisted and pair 21 sticks to  number 15 ∙ Not wholly understood why this causes the syndrome ∙ Mental handicap and physical abnormalities ∙ 1 out of every 800 births ∙ Age of mother effects it ∙ Young women: 1 in every 2000 ∙ Over 40, 1 in 100∙ Over 50, 1 in 12 ∙ No cure, IQ of 50-80, can learn basic tasks and routines, live semi independent lives ∙ Seem quite happy ∙ Heart abnormalities, die in 20s and 30s ∙ Now can live in 50s and beyond ∙ In US, expectancy is 56 Spina Bifida ∙ Opening in the spine, fails to fuse properly  ∙ Membrane able to protrude outside ∙ Bulging, thin sac with fluid and nerve tissue ∙ Some forms very severe ∙ Treated surgically, close over opening, remove sac, graft skin, infection  possible ∙ Bones thin and brittle, muscles weak ∙ Virtually always paralyzed to some extent, below waist ∙ Bladder infections common ∙ 1 in 1000 births, 2000 babies a year ∙ Among whites, 3 times higher in families of low socioeconomic status; rate in  black people less than half than among white ∙ 1994, fed government require folic acid added to enriched grain products o 2005 study, significant decrease o Folic acid B vitamin, not sure how helps Hydrocephaly ∙ “Water on the brain” ∙ Flow of fluid down spinal column blocked, builds up in brain, can cause brain  damage ∙ Shunt used to drain fluid, physical and mental damage frequent Anencephaly ∙ “without brain,” invariably fatal, cerebral hemispheres totally absent ∙ Related to spina bifida ∙ Never hope of improvement  Esophageal atresia ∙ Forms without opening, or does not extend to stomach ∙ Corrected with surgery, success very high Duodenal Atresia ∙ Upper part of small intestine, duodenum closed off, food cannot pass through ∙ Surgery successful in most cases ∙ Born after 26 weeks typically fail to live∙ Half of those 1 to 1.5 pounds fail to survive, those who do have multiplicity of problems o Underdeveloped lungs, cerebral hemorrhages, seizures, blindness,  deafness, mental handicap, less noticeable disabilities Testing for Impairment ∙ Amniocentesis and CVS ∙ Amniocentesis: amnion, membrane surrounding fetus, punctured with needle, amniotic fluid sampled o 14 to 16 weeks o Small risk, less than 1%, miscarriage 1 on 200 o 11 to 12 weeks, small increase in probability of deformed foot ∙ Chorionic villus sampling (CVS): hair-like villi cells from placenta gathered o 6 to 10 weeks, as safe as Amniocentesis  o 0.03% risk of missing or undeveloped fingers or toes, finding  questioned ∙ Amniocentesis used in early 60s, mostly for Rh incompatibility ∙ Neither routine procedures b/c slight hazards ∙ Alphafetoprotein o Test for Down syndrome o Blood sample, presence/absence of 3 fetal proteins show likelihood o Blood test can also indicate likelihood for spina bifida, ultrasounds then used ∙ New noninvasive tests o 3 noninvasive tests at 11 to 13 weeks, 87% accurate for Down  syndrome o Second ultrasound to detect fetal nasal bone, goes up to 97% ∙ 200,000 infants a year require neonatal care Ethics of Birth Impairments ∙ Should they receive ordinary care, special efforts? No care and allowed to  die? Killed in merciful manner? Who decides? What rubrics? Status of newborn ∙ Is it a person? ∙ What is a person? ∙ Is a severely mentally handicapped newborn a person? ∙ Not clear what makes someone a person or a nonperson o Rational decision making ability? Self-awareness? Abstract thought?  Lived experience of any form? ∙ Where is the cutoff for personhood? Reading: The Groningen Protocol: The Why and the What James Lemuel Smith∙ The author describes the problem faced by Dutch pediatrician Eduard  Verhagen of dealing with infants who have a hopeless prognosis and  intractable pain.  ∙ Smith then presents the scheme for classifying infants with serious medical  problems into three categories and the five conditions for legitimizing active  infant euthanasia that make up the Groningen Protocol as developed by  Verhagen and his collaborator Pieter Sauer. Section 2: The Ashley Treatment ∙ The Case of Ashley explores a set of ethical issues parallel to those raised by  premature infants. Though born normally, Ashley began to develop in many  of the abnormal ways that commonly result from premature birth.  ∙ The Ashley case raises the question of what criteria should be used to make  decisions about problems that arise as impaired children grow.  ∙ For example, as Ashley matured, she would begin to menstruate. Should this be allowed to occur normally or, given her impaired condition, was it  reasonable, as her parents believed, to intervene and prevent the menstrual  cycle from occurring to spare her the discomforts, which can accompany it?  ∙ This first article describes the parents view of physical treatments of Ashley  which they thought justified. The second offers a detailed analysis of ethical  issues raised by the Ashley treatment, casting doubt on some of the parents’  decisions. Reading: The “Ashley Treatment” Ashley’s Mom and Dad ∙ The young girl known only as Ashley had an apparently normal birth, but she  appears to have suffered damage to her brain from an unknown cause.  ∙ Her mental and motor faculties have failed to develop, and as a result, she is  completely dependent on others for her care.  ∙ Although the growth of her body was proceeding along a normal  developmental path, her mental and motor functions would never improve.  ∙ Her parents, who identify themselves only as “Ashley’s Mom and Dad,” argue  on their blog about their daughter that the medical procedures they  requested on the behalf of Ashley when she was nine (“the Ashley  treatment”) were all intended to improve the quality of her life, not that of  their own as caretakers. ∙ With or without the treatment, the parents claim, their intention has always  been to keep Ashley at home. The growth attenuation by hormone injections  will keep her small enough to ensure that she is frequently moved to be with  the other family members and the surgery to remove her uterus and breast  buds will prevent menstrual cramps and the breast discomfort caused by  lying down most of the time.  ∙ The surgeries, including a preventive appendectomy, will also spare Ashley  the dangers of breast and uterine cancer and unrecognized appendicitis. The  Ashley treatment, her parents argue, is in her best interest and will improve  the quality of her life.Reading: The Ashley Treatment: Best Interests, Convenience, and Parental Decision-Making S. Matthew Liao, Julian Savulescu, and Mark Sheehan ∙ The authors argue that although growth attenuation in a severely disabled  child like Ashley may be justifiable, hysterectomy and the surgical removal of  breast buds are not.  ∙ Small size could be in Ashley’s best interest, permitting her family to care for  her at home. If the attenuation also promotes the interest of her parents, that should not count against it.  ∙ Moral obligations do not typically require large sacrifices of health and all  others interests and duties. The benefit to Ashley of the removal of her uterus and breast buds, by contrast, is not as clear, and harms are more likely.  ∙ Less invasive ways of protecting against cramps and the discomforts of  having breasts might be found, and the risks of cancer and sexual abuse  seem too unlikely to justify surgery.  ∙ The authors also reject the argument that an immature body is more in  keeping with Ashley’s mental age and will give her greater dignity. ∙ Finally, the authors encourage us to see that the right to be loved and cared  for that Ashley shares with other children, disabled people, and the elderly  should be recognized by society and supported by every able person by  paying taxes and voting for policies that help parents and other caregivers. Reading: Examination of Arguments in Favor of Withholding Ordinary  Medical Care from Defective Infants John A. Robertson ∙ John Robertson defends a conservative natural law position in criticizing two  arguments in favor of withholding “necessary but ordinary” medical care from impaired infants.  ∙ He rejects the claim made by Michael Tooley that infants are not persons and  argues that, on the contrary, there is no non-arbitrary consideration that  requires us to protect the past realization of conceptual capability but not its  potential realization. ∙ The second argument that Robertson considers is one to the effect that we  have no obligation to treat defective newborns when the cost of doing so  greatly outweighs the benefits (a utilitarian argument).  ∙ In criticism, Robertson claims that we have no way of judging this. Life itself  may be of sufficient worth to an impaired person to offset his or her suffering, and the suffering and cost to society are not sufficient to justify withholding  care. Reading: Ethical Issues in Aiding the Death of Young Children H. Tristram Engelhardt, Jr. ∙ The author contends that children are not persons in the full sense.∙ They must exist in and through their families. Thus, parents, in conference  with a physician who provides information, are the appropriate ones to decide whether to treat an impaired newborn when  ∙ there is not only little likelihood of a full human life but also the likelihood of  suffering if the life is prolonged and the cost of prolonging the life is very  great. ∙ Engelhardt further argues that it is reasonable to speak of a duty not to treat  an impaired infant when this will only prolong a painful life or would only lead  to a painful death.  ∙ He bases his claim on the legal notion of a “wrongful life.” This notion  suggests that there are cases in which nonexistence would be better than  existence under the conditions in which a person must live.  ∙ Life can thus be seen as an injury, rather than as a gift. Right to Life of the Handicapped Alison Davis ∙ Davis argues, from her experience as a handicapped person, against allowing doctors, within the first 28 days of the life of a severely disabled infant, to  predict the infant’s quality of life and decide the course of treatment on the  basis.  ∙ Davis points out that the prediction for her would have been a life without  worthwhile quality, a prediction wholly at odds with her own experience of  life.  ∙ She rejects the notion of non-personhood during the first four weeks of life  and expresses the fear that following predictions made during that period to  justify non-treatment would lead to the decriminalization of killing  handicapped people at later ages.

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