Transcript Autonomy of child

MUDr. ThLic. Jaromír Matějek, Ph.D., Th.D.
Ethics in Pediatric Care
Ethics in Pediatric Care


1st part
Conceptual issues
- Other general problems
- Autonomy of children
- Neonatology
Ethics in Pediatric Care
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
2nd part
Neonatal screening of conngenital errors of
metabolism and endocrinopathies
- Predictive genetic diagnostics
- Children and research
- Vaccination
- Dying child
Ethics in Pediatric Care
3 rd Part
 Classic Cases in Pediatric
Care Ethics
- Letting Impaired Newborns Die
Baby Jane Doe
- Anencephaly and organ donation
The Case of Baby Theresa
- Presymptomatic Testing for Genetic
disease
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Conceptual Issues

Autonomy (autos – I, nomos - law)

Central principle in medical ethics.
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Allows to competent patient to make his own
decisions.

Almost absolute right to decide what can be made
with my own body (advance directives).

Based on patient own values.
Conceptual Issues

Autonomy:
 problems in pediatrics:
 Parent's
decisions about children
 Question
of relationship between parent and child .
 Autonomy
of parent versus autonomy (competence)
of child (e. g. informed consent).
Conceptual Issues

Beneficence (bene – good, facio – I make)

Question of values: what is good. Good subjective
v. good objective. Is something like that possible?

What is good for child, what is good for parent(s),
what is good for doctor.

Question of values of parents.
Conceptual Issues

Nonmaleficence – primum non nocere

One should not inflict evil or harm.
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More stringent than obligation to help.

E. g.: not to risk injury in research.
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Question of risk v. benefit

What is FOR CHILD harmful? (autonomy,
values,...)
Conceptual Issues

Justice (jus – iustitia)

Allocation of resources (very expensive therapy in
neonatology or in oncology v. children in very poor
economical and social conditions.)
Other general problems

Paternalism – question of autonomy and good.

In paediatrics: justification for many intrusions
over child's apparent objection.

E. g.: Immunization.
Other general problems

Truth telling – is essential for any moral
community.
Question of credibility.
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Important for confidence of relationship between
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child (parents) and doctor.

E. g.: informed consent, understanding and
competence of child.
Other general problems

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Confidentiality – the promise not to disclose
information except with the patient consent, or
when required by law.
Exceptions: serious harm for the others (abused
child – information about abuser).
Other general problems
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Conflict of interests – conflict of autonomies

E. g.: How could I (as pediatrist) understand
interests of the child and interests of the family?
Conflict between interests of child and interests of
family. How to solve it?
Autonomy of child
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
Autonomy is self-determination and competence
to give law to myself.
Autonomy of patient (child) is limited because of
complexity, novelty and emotional dimension of
the given information. These are limits of freedom
in kantian sense.
Autonomy of child

Consent is not undersigned blank, consent is
process. One must accept information, reflect upon
it – what is changing in my life, what will be
changed in my life?

Questions, dubitation, hope, confidence.

Time as way from dubitation to decision. Each
case is not emergency.

Help to autonomy - help to self-determinate – help
to find yourself.
Autonomy of child
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It means not only give relevant information, but
also listen to his/her family, to patient`s
experiences, needs, preferences.
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Appreciation of competence - 4 fields:
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Competence for decision.

Sufficient information.
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Sufficient understanding.
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Voluntariness
Autonomy of child
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Question of age:
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Solved very differently – In Sweden from 12, in
Canada – individual.
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So called Gillick competence – Gillick v. West
Norfolk (1985) – competence according to
understanding of child (adolescent).
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Similarly Helsinki declaration (WMA 2000)–
informed consent in research.
Autonomy of child
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Convention on the Rights of the Child (UN 1989)
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Article 12
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States Parties shall assure to the child who is
capable of forming his or her own views the right
to express those views freely in all matters
affecting the child, the views of the child being
given due weight in accordance with the age and
maturity of the child.
Autonomy of child

Article 13

The child shall have the right to freedom of
expression; this right shall include freedom to seek,
receive and impart information and ideas of all
kinds, regardless of frontiers, either orally, in
writing or in print, in the form of art, or through
any other media of the child's choice.
Autonomy of child

Charter of the hospitalized child
1. The admission of a child to a hospital must take
place only if the care needed for his kind of illness
cannot
be
administered
at
consultation or out-patient care.
home,
external
Autonomy of child

2. A hospitalized child, no matter his age or state,
has the right to have his parents or an appointed
one by his side day and night.
Autonomy of child
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3. We will encourage parents to stay with their
child and offer all material needs without
additional cost to them and ensure that such act
does not lead to any loss of salary. We will inform
the parents about the rules that are specific to the
ward in order to participate actively in the care of
their child
.
Autonomy of child
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4. The children and their parents have the right to
receive information concerning the illness and its
care. Information adapted to their age and
understanding in order to make their participation
in decision making possible.
Autonomy of child

5. We will avoid all treatment and examinations
which are not necessary. We will try to reduce to
the minimum physical and emotional traumas as
well as pain.
Autonomy of child

6. Children must not be admitted to adult wards.
They should be put in their age groups in order to
benefit from games, leisure, educational activities,
adapted to their age and in security. Their visitors
should be accepted no matter their age.
Autonomy of child

7. The hospital must provide the children with an
environment appropriate to their physical,
emotional and educational needs; in regards as
much to equipment, staff and security.
Autonomy of child

8. The care-giving team must be trained to respond
to the psychological and emotional needs of the
children and their families.
Autonomy of child

9. The care-giving team must be organized in a
way to ensure continuity in care to each child.
Autonomy of child

10. Every child's privacy must be respected. Every
child must be treated with tact and understanding
in all circumstances.
Neonatology


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Informed consent :
Aspects in neonatology:
Do the parents have a good understanding of the
child's disease, prognosis and therapeutic options?
Are the parents capable (or: Do they want to act) of
acting in the child's best interest and thus capable
of giving consent?
What is important for child?
What is good for child?
Psychological needs v. physical needs.
Neonatology

Withholding care (odepření léčby):

In many cases the application of highly technical
procedures is not in the best interest of the child.
(Critically ill infants who are not responding to
present therapy should have further or more
advanced therapy withheld).
Neonatology

Withholding care - criteria:

To have its intended effect.

To reverse the process.

To restore the quality of life that is acceptable to
the patient (or the caregivers?).
Neonatology

Withholding care:

The physician should not withhold care without
discussing with parents.

A decision to withhold therapy should be discussed
with other members of care team, physicians,
nurses, ethicist, psychologist, lawyer,

The indications for and benefits of withholding
care should be clearly defined.
Neonatology
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Withdrawing care (omezení terapie) - criteria:

The care or treatment offers no longer its intended
effects.

Ongoing evaluations or tests show worsing of the
situation and prognosis of a newborn.
Neonatology

Withdrawing care - criteria:

Care given in an emergency should be withdrawn
if it is according to the parent's wishes when they
are informed.

Does the patient benefit from such care?

Can we expect, that the therapy accomplish both
short- and long-term goals?
Neonatology
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Nutrition and patient's comfort:

Two definitions of the nutrition:

1st : therapy, that is, as a medicine that should
potentially be withdrawn.

2nd: as on of the basic patient's rights for comfort.

The parent's understanding of nutrition as therapy
or as basic right is important.
Neonatology
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Nutrition and patient comfort:
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Consensus: Patient should be provided some basic
comforts despite what other circumstances may be
in question.

Factor to be considered to be basic to human life:
cleanliness, pain relief, nutrition (food and water).
Neonatology
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Nutrition and patient comfort:
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Agreement among the parents, caregivers,
administration, legal authorities and bioethics
committees must be obtained if the withdrawal of
nutrition is contemplated.
Neonatology
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Delivery room issues:
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Requires rapid assessment and quick decision
making.

Critical decisions concerning viability, quality of
life, and prognosis.
Neonatology

Delivery room issues:
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General principles:

Discuss as fully as possible with parents their
wishes and expectations before actual delivery of
the child (e. g. congenial abnormalities). Required
coordination between the paediatricians and
obstetricians.
Neonatology

Delivery room issues - general principles:

Be on the side of life.

If the parents is unable to express their wishes, the
emergency therapy must be performed. If in the
aftermath of this crisis it is discovered that the
parents wish no such therapy, then it is appropriate
to withdraw therapy.
Neonatology
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Delivery room issues:

General principles:
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Non-initiation of resuscitation after AHA, AAC:
under 23rd weeks or birth weight under 400 g,
anencephaly and confirmed trisomy 13 and 18.

Generally, initial resuscitation and subsequent
withdrawal of support may allow time to gather
clinical information.
Neonatology
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Delivery room issues:
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General principles:
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Discontinuation of resuscitation is after Gomella
Textbook of Neonatology considered be
appropriate if the infant fails to have return of
spontaneous circulation within 15 min, in Czech
Republic 30 min..
Neonatology

Delivery room issues:

General principles:

Discontinuation of resuscitation:

There are strong data suggesting after a period of
10 min. of asystole survival or survival without
severe disability is highly unlikely.

Very important is discussion with local authorities.
Neonatology

Conflict resolutions:

Conflict is any dispute or disagreement of opinion.

Between physician and the patient (or patient's
guardian). Between physician, nursing staff,
administrative, etc.

Conflict between differing values and moral ideals.
Discuss conception and image of human being.
(Philosophical anthropology).
Neonatology
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Conflict resolutions:
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Help of bioethicist or bioethics committees:
Purpose is to uncover differing moral values and
miscommunication that leads to conflict.
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Bioethics committees: Multidisciplinary team with
physicians, nurses, lawyers, clergy, administrators.
Neonatology
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Conflict resolutions:
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The legal system:
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Some problems cannot be solved only by bioethics
committees, sometimes is useful to ask for judical
opinion.
Neonatal screening of congenital errors of
metabolism and endocrinopathies


The screening is a chance for child, parents and
society.
There are many of ethic problems in a field of
relationship between child, parents and society.

In Czech Republic: Phenylketonuria, congenital
hypothyreosis, congenital adrenal hyperplasia.
Neonatal screening of congenital errors of
metabolism and endocrinopathies
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Ethical criteria (WHO 1968):
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Serious disease

Possibility to care and to treat
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Known latent and early-symptomatic stage
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Good laboratory background
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High acceptance of the screening program
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Known course of disease
Neonatal screening of congenital errors of
metabolism and endocrinopathies
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Ethical criteria (WHO 1968):
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Definite target group.
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Financial cost v. benefit.
Neonatal screening of congenital errors of
metabolism and endocrinopathies
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Ethical criteria (Gray 1998):
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Overbalance benefit over risk?

Is screening program in concrete locality
acceptable (society, political situation)?
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Is quality of screening program adequate?
Neonatal screening of congenital errors of
metabolism and endocrinopathies
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Next requirements:
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Laboratory methodology
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High-quality and sophisticated laboratory system.
(spectrometry)

Using evidence-based medicine.
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Principles of good laboratory practise.
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Economic profitability.
Neonatal screening of congenital errors of
metabolism and endocrinopathies

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Duty of parents to take part in neonatal screening
program:
Voluntariness (also right not to know) v. treatment
costs.

Principle of informed consent.

Conflict between personal and social approach.
Neonatal screening of congenital errors of
metabolism and endocrinopathies

Society fills these requirements:

Screening program fills criteria of validity and
reliability.

High individual usefulness.

Help in individual development.
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Adequate therapy approach.

Decrease of cost for treatment (not prevention) of
the disease.
Neonatal screening of congenital errors of
metabolism and endocrinopathies

Society fills these requirements:

No social stigma.
When these requirements are filled, is duty to take
part in neonatal screening program very high.
According to informed consent principle parents
can refuse to take part in neonatal screening
program. After-effects is taken by child, family
and also by society.
Predictive genetic diagnostics

Predictive genetic diagnostics in relationship with
possibilities to say any relevant information about
disease in future is still very limited.

(Penetrance and expressivity of gens).
Predictive genetic diagnostics

Two ways:

When therapy of disease in young age is possible
(e. g.: multiple endocrine neoplasia MEN 2 with
carcinoma of glandula thyreoidea –
thyreoidectomia) , then is meaningful to make
genetic tests to (prevent) and treat the disease.
Predictive genetic diagnostics


Much more problematic situation comes, when
tested disease bursts in adult life (e. g.: Huntington
chorea or familiar form of Alzheimer disease).
Where is problem? Problem is in psychological
stress and in „fatality“ of the information.
Predictive genetic diagnostics


American Society for Human Genetics, American
Society of Medical Genetics do not recommend
genetic tests in these situations.
Conflict between paternalism of physicians and
autonomy of parents and of children.
Predictive genetic diagnostics


Paternalism (salus aegroti suprema lex, nihil
nocere) – not to test children.
Autonomy (self-determination, rights of the
patients, principle of informed consent) „I want to
know, what will be happened“.
Predictive genetic diagnostics

In concept „Autonomy“ arises a question of selfdetermination, independency, values of the child
(and family). Possible conflict between interest of
child and of family (growing autonomy of child).

Two question:

1st question: Is this procedure adequate or are the
parents under pressure of fear?
Predictive genetic diagnostics


2nd question: Do the parents know in the best way,
what is the best for their child? They must live with
their decision. And thus they can decide about
genetic testing of their child.
Conflict between beneficence and autonomy.
Predictive genetic diagnostics

Beneficence - when tested disease bursts in adult
age:

In first line – to take care about well-being.

Decrease fear and insecurity.

Decision about career.
Predictive genetic diagnostics

Sometimes insecurity continues
(lower, when beginning of disease is too far,
important are relationships in family).

Emotional stress.
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Lower self-assessment.
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Depressions.
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„Guilt“ of the parents.
Predictive genetic diagnostics
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Social stigma, discrimination.
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Problems with insurance.
Predictive genetic diagnostics

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Autonomy - when tested disease bursts in adult
age:
Right to (not) know about situation. (when am I
free?)

Life-project.

Better family-planning.
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Possibility to face the consequences.

Decision about school, job, etc.
Predictive genetic diagnostics

Autonomy of child:

„the child's right to an open future“ (no genetic
testing).

Two possibilities:

1st: Child grows with genetic information but has
no alternative to know or not to know.

2nd: Child grows with uncertainty, but has
alternative to know or not to know.
Predictive genetic diagnostics

Very important are relationships in family.

To moderate stress and uncertainty.

To prepare meaningful plan for life.
Children and research

Discussion about relationship between selfdetermination and informed consent.

Risk v. benefit.

Medicine and business

Medicine as business.
Children and research

DECLARATION OF HELSINKI

WMA (1964 – 2004)
(Ethical Principles for Medical Research Involving Human
Subjects )

2. It is the duty of the physician to promote and
safeguard the health of the people. The physician's
knowledge and conscience are dedicated to the
fulfilment of this duty.
Children and research

DECLARATION OF HELSINKI

5. In medical research on human subjects,
considerations related to the well-being of the
human subject should take precedence over the
interests of science and society.
Children and research

DECLARATION OF HELSINKI

8. Medical research is subject to ethical standards
that promote respect for all human beings and
protect their health and rights. Some research
populations are vulnerable and need special
protection. The particular needs of the
economically and medically disadvantaged must be
recognized.
Children and research

DECLARATION OF HELSINKI

15. Medical research involving human subjects
should be conducted only by scientifically
qualified persons and under the supervision of a
clinically competent medical person. The
responsibility for the human subject must always
rest with a medically qualified person (...).
Children and research


DECLARATION OF HELSINKI
22. In any research on human beings, each
potential subject must be adequately informed of
the aims, methods, sources of funding, any
possible conflicts of interest, institutional
affiliations of the researcher, the anticipated
benefits and potential risks of the study and the
discomfort it may entail. The subject should be
informed of the right to abstain from participation
in the study or to withdraw consent to participate at
any time without reprisal.
Children and research


DECLARATION OF HELSINKI
22. cont.: After ensuring that the subject has
understood the information, the physician should
then obtain the subject's freely-given informed
consent.
Children and research

DECLARATION OF HELSINKI

24. For a research subject who is legally
incompetent, physically or mentally incapable of
giving consent or is a legally incompetent minor,
the investigator must obtain informed consent from
the legally authorized representative in accordance
with applicable law.
Children and research

DECLARATION OF HELSINKI

24. cont.: These groups should not be included in
research unless the research is necessary to
promote the health of the population represented
and this research cannot instead be performed on
legally competent persons.
Children and research

DECLARATION OF HELSINKI

25. When a subject deemed legally incompetent,
such as a minor child, is able to give assent to
decisions about participation in research, the
investigator must obtain that assent in addition to
the consent of the legally authorized representative.
Children and research


Very dangerous is conception Medicine as
business.
70% of unlicenced and off label drugs in European
countries is without formal licence.

Most of research take place in relationship between
universities and big pharmaceutical firms.
Children and research

There are two sorts of problems:

1st: Pharmaceutical industry must according to
„business logic“ to act to at competitive level
remain.

2nd: Considerable are also business requests of
physicians (universities).

Both of them are interested to make „good“ advantageous - research project.
Children and research





Research planning and economic conflict:
Life-style remedies
Me-too drugs – producers want to make a similar
product to keep their position in market – needs of
patients are not ground for research.
For physicians (universities) it can be very
important to be in multicentric, international group.
„Sponsoring“
Children and research

Conflicts during research study

Necessary is to have enough patients. (Some
patients back out of study and thus study can be
not valued.) Therefore are physicians „stimulated“.

Possibility of to rig with data.
Children and research

Publications and economical interests:

Not only researchers, but also experts interpreting
the studies can (and) influence accepting of results
by medical public.
Children and research


For pharmaceutical firms is very expensive to
make a special research for children (e. g.:
specialities in pharmacokinetics).
High risk for e.g. neonatology – many remedies
(incl. antibiotics) is with „enough experiences“,
and antibiotics must be applied.

High risk studies during pregnancy. What is safe
during pregnancy?
Children and research

Possibility of evidence-based medicine in
pediatrics? To elaborate concrete therapeutic
recommendations without good studies is fast
impossible.

Motivation of the leaders of research?

Importance of the informed consent and control!

Autonomy of patient and concrete responsibility of
researcher.
Vaccination

In Czech Republic obligatory, Act 258/2000 Sb.

Responsibility of parents and health authorities.

Ethics:

Benefits and possible side effects of an
intervention.

Good for child v. good for society?
Vaccination


Why can the society require anything against
autonomy of child (parents, patient)? Informed
consent?
Subjective (utility for concrete child)
v. objective (justice and solidarity).
Vaccination

If the goal is solidarity rather than conformity, the
parents must be free to decide what they think is
right, because that is what moral responsibility is
all about.
Vaccination

Solidarity, however, could never be accepted as an
argument without parents trusting the messages
from the health institutions and availability of
reasonable societal support for those who claim an
association between vaccinations and possible side
effects.
Dying child

What does the child know about death?

And about his/her own death?

Does the child foresee his/her own death?
Dying child



First ideas about death – what the death is and
what is after death – has the child around an age
ten years. (This is very various, depend on his/her
own chronic disease or on experience with the
death in own family.)
Some say, that it is more before – around 2 – 3
years. Around first year of life child differentiate
between living and not-living being.
Important for ideas about death is I-experience. I
exist.
Dying child

Child meets with death by two ways:

TV, cinema – death is long away.

Family – death is denied.
Dying child

Today are children full informed.

Question is „how“.

There are four principles:
1.You can know everything, even if it is hard for
You.
2. We will never lie.
3. You will not be never alone.
4. You are not at clinic needless.
Dying child

5 phases of Kübler-Ross:
1. negation
2. aggression
3. haggle, looking for offender
4. depression
5. acceptance
Children do not live through these phases.
Young people live through these phases only
partly.
Dying child

Questions of children:

What is dying? Is dying hard?

When?

Will I be alone?

What is after death?

Will you think of me, or will you forget?
Dying child
 Very
important is to listen our children.
 To be with them.
Classic Cases in Pediatric Care Ethics
(According to Pence E. Gregory: Classic Cases in Medical Ethics)
Letting Impaired Newborns Die
Baby Jane Doe


Question, whether continued treatment of impaired
neonate is worthwhile and consider forgoing
treatment in order to hasten death.
Plato (The Republic), Aristotle (Politics) advocated
killing impaired newborns.

Christianity condemned abandonment and
infandicide (established foundling hospitals)
Letting Impaired Newborns Die
Baby Jane Doe




In modern western world „letting die“ tends to take
place in a different context of neonatal intensive
care units (NICU).
Possibility to keep premature and infants at risk
babies alive.
Dilemma: expense of NICU and low quality of life
(neurological damages – hemorhagies and
hypoxia).
Concept of person. Is hardly impared newborn a
person? - Question of Peter Singer... Human being
is a person according to its mental capacity.
Letting Impaired Newborns Die
Baby Jane Doe

Jane Doe was born on 9th April 1982.

She had Down syndrome and tracheoesophageal
fistula (very serious, but for Jane Doe 90% success
of operation).

Parents decided not to allow the operations
(Arguments: some people with M. Down are with
very low quality of life and „lifetime cost“ was 1
million U$).
Letting Impaired Newborns Die
Baby Jane Doe




Hospital and paediatricians disagreed with the
parents's decision and convened session with a
judge.
Arguments of parents and obstetrician: very low
quality of life.
Court in Indiana ruled for parents.
The prosecutors appealed to US Supreme Court for
emergency intervention, but Infant Doe died before
they arrived in Washington, D.C.
Letting Impaired Newborns Die
Baby Jane Doe
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Discussion: Discrimination solely on the basis of
handicap?
Department of Health and Human Services:
Discriminatory failure to feed and care for
handicapped infants in this facility is prohibited by
federal law (poster on the outer glass walls of
EVERY NICU).
Letting Impaired Newborns Die
Baby Jane Doe
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Baby Jane Doe – own name: Kerri-Lynn
was born with spina bifida, microcephaly,
hydrocephaly and damaged kidney.
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Parents refused a treatment – disallowed surgery
but allowed palliative care: food, fluids,
antibiotics.
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Kerri-Lynn continued to survive, her open spinal
wound was closed.
Letting Impaired Newborns Die
Baby Jane Doe
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During the court battles over Kerri-Lynn, her
parents changed their minds and permitted surgery
to drain her hydrocephalus.
The baby had been given antibiotics to prevent
pneumonia.
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At age 5,5 months was Kerri-Lynn taken home.
Letting Impaired Newborns Die
Baby Jane Doe
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According to Kathleen Kerr – winner of Pulitzer
Prize for local reporting, Kerri-Lynn after 5 years:
was talking, attending school for handicapped
children.
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She could not walk, uses of wheelchair.
Letting Impaired Newborns Die
Baby Jane Doe
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Ethical issues:
Selfishness?
For a couple who both work, for instance, raising a
severely disabled child usually means that one
parent must give up his/her job – and that the
couple will lose this income.
Some disabilities are lifelong. (Child can outlive
them.)
Is it so „selfish“ to decide that they are not „called“
to spend their own lives caring for such a child?
Letting Impaired Newborns Die
Baby Jane Doe
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Must be impaired child fatalistically accepted by
every family?
Can we conclude that a parent who allows a
disabled infant to die lacks morality or is merely
following a different morality?
Question of value of the life in family, life
expectations, but also acceptance and selfsacrifice.
Letting Impaired Newborns Die
Baby Jane Doe
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Abortion?
Possibility to undergo amniocentesis or sonogram
to indicate a fetus with a chromosomal
abnormality. These pregnancies are terminated. Is
it correct?
E. g. Fetus with spina bifida are almost be aborted.
BUT: If spina bifida justifies abortion, why does
not it also justify letting a newborn with spina
bifida die?
Question of meaningfulness of life, of suffering.
Letting Impaired Newborns Die
Baby Jane Doe
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Non-treatment versus infanticide
Is infanticide and forgoing of therapy morally
different?
Motive and result is the same: the death of the
baby.
But:
Infanticide is active killing process and thus
against essential role of physician.
Forgoing of therapy is recognition of limit in our
lives – with help of palliative care.
Anencephaly and organ donation
The Case of Baby Theresa
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Anencephaly is congenital neurological disorder
characterized by absence of the cerebrum and
cerebellum, top of the skull, resulting in exposure
of the brain stem.
EEG (electroencephalogram) – autonomic
functions – breathing and heartbeat may be
present.
Anencephalics do not meet the Harvard criteria of
brain death.
Anencephaly and organ donation
The Case of Baby Theresa
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Harvard criteria of brain death:
Unreceptivity and unresponsitivity--patient shows
total unawareness to external stimuli and
unresponsiveness to painful stimuli;
No movements or breathing--all spontaneous
muscular movement, spontaneous respiration and
response to stimuli are absent;
No reflexes--fixed, dilated pupils; lack of eye
movement even when hit or turned, or ice water is
placed in the ear; lack of response to noxious
stimuli; unelicitable tendon reflexes.
Anencephaly and organ donation
The Case of Baby Theresa
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Anencephalics are the major potential source of
donor organs for other babies born with congenital
defects.
In the USA need organ transplantation 2000
children.
About 300 anencephalic babies are born alive each
year.
Anencephaly and organ donation
The Case of Baby Theresa
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Normal course of anencephaly:
Heart is gradually to stop beating: this diminishes
the blood flow, organs become anoxic and start to
deteriorate.
By the time the brain stem is dead, the heart and
kidneys are no longer useful for transplantation.
Anencephaly and organ donation
The Case of Baby Theresa
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Laura Campo learned during eight month of
pregnancy, that the fetus is anencephalic. This
diagnosis was made to late and no abortion could
be performed (Laura Campo would have aborted
the fetus).
Laura Campo decided to bring the fetus to term to
serve as a source of organs.
Baby Theresa was born by caesarean delivery.
Before her organs could be donated, Baby Theresa
had to be declared brain-dead.
Anencephaly and organ donation
The Case of Baby Theresa
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But Florida used the strict Harvard standard of
brain death, and Theresa did not meet that standard
(most anencephalic babies do not).
The neonatologist said that unless the baby was
declared brain-dead, he would not remove the
organs.
The parents asked the judge so that the baby
should be an organ donor.
Anencephaly and organ donation
The Case of Baby Theresa
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Answer of judge: „I am unable to authorize
someone to take your baby's life, however short,
however satisfactory, to save another child. Death
is a fact, not an opinion.“
It was certified by Florida's District Court of
Appeals.
On March 29, 1992, Theresa began to experience
organ failure in spite of support from a respirator.
Theresa died, and her organs were useless for
transplantation.
Anencephaly and organ donation
The Case of Baby Theresa
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Ethical issues:
Should any baby be used for the good of another
baby?
If so, what are the criteria?
What are the social consequences?
Argument against using infants as organ donors is
their vulnerability: the more vulnerable patients
are, the less defensible it is to do something to
them without their consent. Babies are considered
the most vulnerable of all.
Kantian argument: we are purpose of our life not
instrument for others.
Anencephaly and organ donation
The Case of Baby Theresa
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Argument in favor of using infants' organs for
organ transplants:
Parents could choose for a child as the child ought
to choose in adulthood.
Utilitarian argument: infants' organs should be
used for transplant if that would result in the
greatest good for the greatest number.
Anencephaly and organ donation
The Case of Baby Theresa
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Problem of brain-dead definition
Who is anencephalic? Frequent confusions during
diagnostics with microcephaly.
Is not anencephalics also PVS?
If borderline anencephalics can become a source of
organs, there might be a tendency to use infants
with closely related disorders (atelencephaly,
lissencephaly) . Problem of slippery slope.
How fast do we want do change our standards of
person being to create more organs for
transplantations?
Anencephaly and organ donation
The Case of Baby Theresa
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According to Ontario protocol, a potential
anencephalic donor is to be mantained on a
respirator, but periodically removed from the
respirator to see if independent breathing will
occur (so that brain death can be declared if such
breathing does not occur).
Would this removal be in the best interest of the
anencephalic infant?
Is the anencephalic infant really being seen as a
patient?
Anencephaly and organ donation
The Case of Baby Theresa
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Another question: the idea of keeping such a fetus
alive to be used later as a source of organs.
There seems to be a real distinction between
keeping a fetus alive for this purpose and simply
using the organs of a baby who has accidentally
become brain-dead or who has unexpectedly been
born anencephalic.
Anencephaly and organ donation
The Case of Baby Theresa
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Today there is a general agreement that
anencephalic babies are poor candidates for organ
donation after brain death, and that not enough
babies would be suitable by transplantation to
justify changing legal standards of brain death
specifically for anencephalics.
In 1993 a court in Virgina applied the American
with Disabilities Act to an allegedly anencephalic
baby- known as Baby K – and refused to allow the
infant's respirator to be disconnected.
Presymptomatic Testing for Genetic Disease
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Classic disease is Huntington's chorea
[HD(isease)]
Progressive neurological disease in which neurons
in the caudate nuclei region of the brain rapidly
degenerate.
Average age of onset is 36.
1st stage: small loses of muscular coordination,
changes in personality – victim is angry,
depressed.
2nd stage: speech becomes slurred, facial
expressions become grotesquely distorted. Victim
loses her or his job.
Presymptomatic Testing for Genetic Disease
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3rd stage: the victim is incontinent, with severe
mental deterioration, become dependent on others,
at home or in an institution.
4th final stage: the victim stares blankly ahead and
remains motionless.
Because onset is so late (30 – 50 years), people
with HD have children before learning that they
are affected.
About 20.000 to 25.000 Americans have HD, more
than 100.000 are in risk.
Presymptomatic Testing for Genetic Disease
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People at risk of HD live with a genetic sword of
Damocles over their heads, constantly wondering it
each stutter, spill, or stumble is a sign of the
disease.
„Oh, no! Is this the beginning?“
Presymptomatic Testing for Genetic Disease
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Ethical Issues:
The personal decision whether or not to take the
HD linkage test is by no means easy: there are
problems with both knowing and not knowing the
answer.
The case of knowledge:
To many people, it seemed obvious that everyone
at risk of HD has a „right to know“, or „duty to
know“.
Relief of testing negative could outweigh the
possibility of testing positive.
Presymptomatic Testing for Genetic Disease
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The patients who are positive for HD feel that
knowledge give them control over their lives and
make them live more in the present than in the
future.
Question of childbearing. Test positive: people
who would test positive may feel that they are
forced to remain childless.
People who would test negative have health
children.
Presymptomatic Testing for Genetic Disease
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The case for not knowing
Feeling that the devastation of testing positive
outweighs the possibility of testing negative.
Problem of „sick identity“.
Whether those who agree to a test really
understand what they are doing?
Many people simply cannot predict how they will
react if testing positive – what they will feel or do
if they learn the worst. (The potential of suicide.
People who say they might commit suicide should
not be tested.)
Presymptomatic Testing for Genetic Disease
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Confidentiality
An important issue in genetic testing is
confidentiality, privacy.
As the power of government (and of business) has
grown, the right to privacy has seemed
increasingly important (especially as information
and surveillance have been computerized).
Insurance companies will raise premiums for
families at risk or simply refuse to cover such
families.
Presymptomatic Testing for Genetic Disease
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Crucial is to control the distribution of test results:
to decide who should and should not receive them.
Many large institutions, such as the military,
universities, and large companies, „self-insure“
themselves and pass their losses along to
employees through increased premiums.
Some employers may not keep test results
confidential.
Violation of confidentiality might also keep a
physician out of a medical group, a student out of a
university or graduate school.
Presymptomatic Testing for Genetic Disease
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Confidentiality in the context of the family:
Courts have ruled that relatives cannot be
compelled to be tested for compatibility as possible
bone-marrow or organ donors;
By analogy:
Such legal precedents indicate the courts will not
force relatives to participate in genetic tests.
BUT: Testing one member of a family has
implications for other members. Any number of
questions can arise as a result.
E. g.: Does a prospective spouse have a right to
know about the risk of a disorder like HD?
Presymptomatic Testing for Genetic Disease
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Embryonic and Fetal Testing
Risk in:
Finance, insurance companies
Slippery slope (to select against homosexuality, on
sex or the other, deaf parents for deafness of own
child).
Right of the child to know or to not know.
Ethics in Pediatric Care
The End
Ethics in Pediatric Care
Thank you