Chapter 6: Treating or Terminating: The Dilemma of Impaired Infants

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Chapter 6 Treating or Terminating The Dilemma
of Impaired Infants
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Ethical issues

• The treatment of impaired infants raises ethical
  questions common to other bioethical issues such
  as abortion and euthanasia but also specific to
  the conditions of such infants themselves.
• The severe under-development of low-birth-weight
  babies puts them at high risk for developing
  serious physical and mental problems later in
  life. Some facts about such infants are
  summarized below.
• The basic moral question about extremely
  low-birth-weight infants is whether they ought to
  be treated at all or, if they are already being
  treated, whether that treatment should continue.

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Ethical issues

• On the one hand, are those who regard the
  treatment of all infants as a moral obligation
  because they have a right to life in the same way
  as an adult human being. The fact that these
  infants might develop severe problems later, for
  themselves or others, is simply irrelevant.
• All means necessary should be used to keep such
  infants alive. Those who take this perspective
  will typically be opposed to abortion and
  euthanasia on similar grounds.

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Ethical issues

• On the other hand, others believe that the great
  likelihood of serious later physical and mental
  problems provide compelling reasons to withhold
  or minimize extraordinary efforts to keep such
  children alive.
• On this view, the potential quality of life of
  the child is a crucial factor in deciding whether
  such effort should be made.
• Additionally, resources devoted to such children
  are resources that cannot be used to help others.
  How should the choice be made?

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Ethical issues

• One of the factors that make impaired infants an
  ethically unique situation is the fact that the
  children themselves cannot be asked what they
  would want. Indeed, depending on the impairment,
  they may never reach a level of competence which
  would allow them to make such a decision.
• In the case of adults, whether a patient should
  be treated or not, is today recognized as a
  question which the patient, himself, should
  answer if he is competent.

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Ethical issues

• But, since the impaired infant cannot make this
  decision, someone else, physicians, parents, or
  the state must do so.
• Further, what criteria should be used in making
  the decision whoever is determined to be the
  appropriate authority?

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Ethical issues

• The two issues intertwine. In the case of
  euthanasia of adults in severe pain or at the end
  of life, they have lived long enough to develop
  preferences, which others might know about. Such
  preference could be part of a decision by the
  patient or others to end life.
• But, in the case of an impaired infant, such
  preferences do not exist because there was no
  time for them to develop. In such cases,
  assumptions must be made by others. Indeed,
  some raise the question whether we can say the
  infant is even a person.
• One approach, appealing to the best interests of
  the child tries to assess what will best benefit
  the child given the state of its development. But
  what constitutes best interests and is there a
  disinterested way of answering this question?

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Facts about impaired infants

• Every year, more than 400,000 babies are born at
  least six weeks prematurely and about 62,000 of
  them weigh less than 1600 grams (about 3.5
  pounds).
• In the United States, more than a thousand
  preterm babies are born each day, and from 1990
  to 2006 (the latest figures, published in 2010),
  the preterm birthrate increased by 20 percent.
• About 13 percent of all births in the U.S. are
  preterm.

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Facts about impaired infants

• Thanks to the development of new procedures and
  the use of new drugs, almost 85 of premature
  infants live long enough to leave the hospital
  (though many must return), but only about 20
  have no lasting major physical or mental
  impairment.
• The more premature an infant and the lower the
  birth weight, the more likely it is that the
  infant will die soon after birth or be severely
  physically and mentally impaired.

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Facts about impaired infants

• About half of premature infants in the 500- to
  750-gram (1- to 1.5-pound) range fail to survive.
  From 25 to 33 percent of babies under 750 grams
  have irreversible neurological damage.
• The figure rises to between 40 and 50 percent for
  those with a birth weight between 500 and 600
  grams. About 5 to 10 percent of these very
  low-birth-weight babies will have cerebral palsy,
  and a similar percentage will have IQs below 70,
  where 100 is average.

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Facts about impaired infants

• Survival rate is closely connected with gestation
  time. The technological limit for preserving the
  lives of premature infants is about twenty-three
  to twenty-four weeks.
• Estimates of an infants developmental stage may
  be off by a week or so because its impossible to
  be certain when conception took place.

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Facts about impaired infants

• Premature girls have about a one-week
  developmental advantage over boys, and black
  infants have the same advantage over white
  infants. Thus, a white boy may be about two weeks
  behind in development compared with a black girl.
• Premature babies have not spent enough time in
  the uterus, and as a result, they are
  physiologically underdeveloped. The more
  premature the infant, the more underdeveloped it
  is. Birth weight, generally, is an index of
  developmental prematurity.

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Facts about impaired infants

• Extremely premature neonates are fetal infants
  that have spent hardly more than half of the
  forty-week gestation period in their mothers
  uterus.
• Extremely premature infants are liable to
  life-threatening disorders. Many have problems
  eating, digesting food, and absorbing nutrients.

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Facts about impaired infants

• Their lungs are small and brittle and fill up
  with secretions, making it impossible for them to
  breathe normally. They must be put on a
  mechanical ventilator, and they tend to suffer
  from respiratory infections.
• Poor prenatal development also makes smaller
  infants prone to cerebral hemorrhages, or brain
  bleeds, that can result in a variety of
  devastating consequences. Infants that have had
  brain bleeds are prone to seizure disorders,
  blindness, low vision, deafness, mental
  retardation, and various more subtle mental
  difficulties that may show up only years later.

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Section 1 The Groningen Protocol

• The focus of the protocol is on proposed
  guidelines for determining when active infant
  euthanasia is justified.
• But, just as important, is the context which gave
  rise to its formulation. Active infant euthanasia
  is illegal in most, if not all, countries of the
  world. This means that doctors who practice it
  are subject to criminal prosecution.

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Section 1 The Groningen Protocol

• Should this be?
• Is it reasonable to put the euthanizing of an
  infant, like Bente Hindriks (discussed on page
  506) who was in intractable pain and bound to
  die, in the same moral category as someone who
  has deliberately committed homicide?
• Answering the question of how impaired infants
  ought to be treated is relevant to answering this
  question as well. The fortunes of well-meaning
  physicians are on the line as well as impaired
  infants.

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Reading The Groningen Protocol The Why and the
WhatJames Lemuel Smith

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• 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.

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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.

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Reading The Ashley TreatmentAshleys 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
  Ashleys 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.

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Reading The Ashley TreatmentAshleys Mom and
Dad

• 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.

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Reading The Ashley Treatment Best Interests,
Convenience, and Parental Decision-MakingS.
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.
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• Small size could be in Ashleys 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.

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Reading The Ashley Treatment Best Interests,
Convenience, and Parental Decision-MakingS.
Matthew Liao, Julian Savulescu, and Mark Sheeh

• 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 Ashleys
  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.

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Section 3 The Status of Impaired Infants 

• The papers in this section raise an issue that is
  common to several other bioethical concerns
  whether impaired infants are persons, that is,
  entities which deserve the same rights as adult
  humans, in particular, the right to life.
• The right to life debate is systematically
  explored in the readings in the chapter on
  Abortion (chapter 5).

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Reading Examination of Arguments in Favor of
Withholding Ordinary Medical Care from Defective
InfantsJohn 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.

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Reading Examination of Arguments in Favor of
Withholding Ordinary Medical Care from Defective
InfantsJohn A. Robertson

• 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.

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Reading Ethical Issues in Aiding the Death of
Young ChildrenH. 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 or
• (2) the cost of prolonging the life is very
  great.

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Reading Ethical Issues in Aiding the Death of
Young ChildrenH. Tristram Engelhardt, Jr.

• 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.

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Right to Life of the HandicappedAlison 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 infants
  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.