ETHICS
IN
PEDIATRICS
Ricardo L. García, MD, FAAP
Pediatric Intensivist
University Pediatric Hospital
Key Points

Can the patient choose their treatment?

The capacity to know what is BEST relies in
who?

Can we have empathy but remain objective?

Can we let them go?

How many study medicine to save lives?

How many study medicine for the money?

How many think those are over rated
questions?
ETHICS IN PEDS

What are the issues?

What is the deal?

Why talk about end of life?

Aren’t we physicians?, should we allow our
patients to die?
Clinical Scenario A

Erskin 14 year old male with metastatic
neuroblastoma which has failed BMT, is admitted
to PICU due to respiratory distress. He has
metastasis to both lungs.




Parents want “everything” done!
Oncologist say do everything you can!
And patient says: “I do not want the breathing machine”.
What should we do now?

Willowbrook State School was a statesupported institution for children with mental
retardation located in central Staten Island in
New York City.

Hepatitis studies on children WITHOUT consent
1963-1966.
OBJECTIVES

Definition

Classifications or types

Case scenario discussion

Our role as caregivers
DEFINITION
The term ‘ethic’ comes from the Greek word: ethikos
which means ‘moral, character’

Ethics is the study of the rational process for
determining the best course of action in the face of
conflicting choices.

Ethical principles are general statements about what
types of actions are right or wrong. Including the
principles of autonomy, beneficence, non-maleficience
and justice.

Reference: Dietrich, A., & Omdahl, D. (1995). The ethics handbook for home health agencies. Mequon, WI: Beacon Health Corporation.
DEFINITION

Medical ethics are concerned with moral
questions raised by the practice of medicine
and, more generally, by health care.
ETHICS …
Ethics are involved and/or influence by:

laws

religion

scientific studies

philosophy

moral
Understanding the basis for Clinical
Ethics
Ethical philosophies

Deontology (Kant)

Consequentialism (mill)

Virtue (Aristotle)

Hedonism

Formalist
Clinical Ethics: Past and Present

Before 1960 - based on traditional professional ethics
of medicine
 Physician was major decision-maker

Physician considered a person of highest character
who adhered to prominent virtues

Paternalistic
Clinical Ethics: Past and Present …

After 1960 - Based on patient “rights”
WHY THE CHANGE?

Ethical lapses in human research noted in 60s and 70s

Rapid increase in medical technology

Quinlan Case - First important “right to die” case

President’s Commission for the Study of Ethical Problems
in Medicine

State laws defining the parameters for decision-making at
the end of life
Clinical Ethics

Medical ethics is primarily a field of applied
ethics



Values in medical ethics
 Informed consent
 Confidentiality
 Beneficence
 Autonomy
 Non-Maleficence
 Importance of communication
Ethics committees
Cultural concerns

Conflicts of interest: Futility
Medical ethics

Six of the values that commonly apply to medical ethics
discussions are:
 Beneficence - a practitioner should act in the best interest of the
patient.

Non-maleficence - "first, do no harm“

Autonomy - the patient has the right to refuse or choose their
treatment.

Justice - concerns the distribution of scarce health resources, and the
decision of who gets what treatment (fairness and equality).

Dignity - the patient (and the person treating the patient) have the right
to dignity.

Truthfulness and honesty - the concept of informed consent.
Principles of Medical Ethics





Physician shall be dedicated to providing competent
medical care, with compassion and respect for human
dignity and rights.
Shall uphold the standards of professionalism, be honest,
and strive to report physicians deficient in character or
competence, or engaging in fraud or deception, to
appropriate entities.
Shall respect the law and also recognize a responsibility
to seek changes in those requirements which are contrary
to the best interests of the patient.
Shall respect the rights of patients, colleagues, and other
health professionals, and shall safeguard patient
confidences and privacy.
Shall continue to study, apply, and advance scientific
knowledge, maintain a commitment to medical education.
Principles of Medical Ethics

A physician shall, in the provision of appropriate patient care, except
in emergencies, be free to choose whom to serve, with whom to
associate, and the environment in which to provide medical care.

A physician shall recognize a responsibility to participate in activities
contributing to the improvement of the community and the
betterment of public health.

A physician shall, while caring for a patient, regard responsibility to
the patient as paramount.

A physician shall support access to medical care for all people.

Adopted by the AMA's House of Delegates June 17, 2001
Ethical decision making in
healthcare today

Medical care defined by Courts, Legislatures,
Commissions, Media, Ethics Committees, and others

Ethical decision-making may be very complex

No longer does the doctor make decisions alone nor
does the autonomous patient exercise his/her rights
without interference.

Clinical ethics: decisions are more process oriented
than outcome oriented, requiring a process of
consensus building, no matter the outcome.
21 year old Baby Doe Rule

Federal regulation of how to treat extremely ill,
premature or terminally ill infants less than 1
y/o

Amendments of the Child Abuse and
Protection and Treatment Act
Kopelman et al. Pediatrics 115(3)797 2005
21 year old Baby Doe Rule

The 1996 AAP Committee on Bioethics, in
"Ethics and the Care of Critically Ill Infants
and Children," also agrees that decisionmaking for all children regardless of age
should be individualized and made by the
guardians and physicians based on what is
best for the infants.
Decision Making

Based on patient right to auto-determine.

In pediatrics is based on the FAMILY to
determine in the ‘BEST interest’ of the Child
as an individual.
Ethical Issues in Healthcare
Informed
consent
Confidentiality
Maintenance
Quality
Right
/ privacy
of healthcare provider competence
of Life
to Live or Die
Participation
Abortion
Eutanasia
in the decision making process
Ethical Issues in Pediatrics
■
■
■
■
■
■
■
Refuse immunizations
Refuse seek care
Genetic therapy
Congenital anomalies
Withhold therapy vs. Withdrawal of treatment
End of life decisions
Informed consent ?
Ped Issues

Informed consent:




Parents or legal guardians are responsible
Based on the “best interest of the child”
Pediatric patient should participate in the process
‘A child to ultimately become self governing,
they must relentlessly practice decision
making’.
Ped Issues…

AAP: Informed consent has only limited
direct application in pediatrics, it should be
replaced by concept of parental permission /
child assent.

GOAL: Collaborative decision making among
patient, family and physician integrating child
interests with family values and beliefs.
Ethics

Ethical theories does not give a concrete
answer but serves as guide.

Doctrine of “DOUBLE EFFECT”

Ordinary versus Extraordinary
Ethics

In example:

Should we alleviate the pain of a dying patient?

Should we stop a treatment that keeps our patient
alive, but still will not save him?
CASE SCENARIO
Case Scenarios

CASE 1:

1 y/o child in routine pediatric office visit with no
immunizations due to parents concern about
learning disorders, side effects and risks of
autism.

What should we do?



Dialogue with parents.
Continue to Care for Child.
Refer to social services / court.
Case Scenario

CASE 2:

7 y/o male that has been sick at his home, parents
refuse to take him to the doctor, but the neighbor
knows that you are a physician and tell you of the
situation. Parents are from Christian Scientist
Religion

What should we do?



Dialogue with parents and check the child
Do nothing, is not your business
Refer to social services with or without your involvement
IMPORTANT

Children are not the ‘martyr’ of the parents
religious beliefs

If there is risk of immediate harm or the
absence of action may cause definitive harm
we must act in the BEST INTEREST of the
CHILD.
END OF LIFE…

How we define it?

Our own thoughts and feelings will influence
our approach to patient care.

“We are terminal as soon as we are born”
END OF LIFE

Understand your environment

Sometimes the issue can be as an elephant
inside the room…

We become anxious to talk about palliative
instead of ‘curative’ care
END OF LIFE

Requires:

Becoming comfortable with end of life issues

Understanding the scope of experience from
patient’s family perspective

Understand the full range of options

Developing a “can do” approach

Learning to share and receive information in a
compassionate manner
Alternative views of death
■
“Higher brain” or partial brain concepts of death focus
on:
■
■
■
loss of cognitive functions
loss of capacity for memory, reasoning, and other higher brain functions
loss of personal identity
■
While many individuals feel that loss of the above
capacities make a person “as good as dead,” These
views are not universally held .
■
At present we are left with defining death in the ICU by
measurable parameters.
FACTS

Withdrawal of Life support is a clinical procedure
that requires good medical skills, cultural sensitivity,
attention to ethical principles, and close
collaboration with patient’s families.

Basic Terminology



Futility
Palliative
Life Sustaining Treatment
FUTILITY

American Thoracic Society (ATS) 1991

“If reasoning and experience indicate that the
intervention would be highly unlikely to result in a
meaningful survival for that patient”.

Most of the literature on medical futility examines
the ethical and legal aspects rather than its use in
clinical practice.
Principles for Palliative Care
The AAP calls for a common objective:
“The goal is to add life to the child’s years, not simply
years to the child’s life”


Palliative care enhances the child’s quality of life by
symptoms-relief and by dealing with
circumstances/conditions that prevents the child to
enjoy life
Right to Die

Karen Ann Quinlan (March 29, 1954 – June 11, 1985).

An important figure in the history of the right to die debate in USA.

Because she and her family were Catholics, several principles of
Catholic moral theology were critical in deciding the case and thus
influencing a development in American law, an influence
replicated around the world.

The case is credited also with the development of the modern field
of bioethics.

Although Quinlan was removed from active life support in 1976,
she lived on in a coma for almost a decade until her death from
pneumonia in 1985.
Life-Sustaining Treatment (LST)

Does not necessarily imply an intent or choice
to hasten the death of a child

Duty of care is not an absolute obligation to
preserve life by all means

Forgoing life-sustaining treatment does not
imply that a child will receive no care; The
“focus” of treatment changes from life
sustaining to palliative
Life-Sustaining Treatment (LST)

The background to all treatment is “in the child’s best
interests”

Withholding and the withdrawal of live saving
treatment are ethically equivalent but emotionally they
can be poles apart

Decisions should be frequently reviewed, and can
change with changing circumstances

Treatment of the dying patient is not euthanasia
Situations where LST might be
considered

The “No Chance Situation”

The “No Purpose Situation”

The “Unbearable Situation”

Any combination of the above
i.e. the Permanent Vegetative Status
Who has the Authority
to make Health Care Decisions

Parents’ moral responsibility for their child’s
care

Their responsibility can over-ride a child’s
refusal

Legal Guardian: Responsibility acquired by
people who are not the child’s natural parents

Parent’s/legal guardian’s role is not unlimited
Capacity and Competence
• Emancipated Minor Status: can legally refuse
treatment
• Mature Minor: has intellectual/emotional development
to understand the nature of the medical decision and
its consequences. They can give valid consent.
• Refusing treatment is increasingly becoming an
ethical issue instead of a legal one.
Special Circumstances

Child Abuse

Congenital Malformations

Advance Directives: Living Wills or Donor Cards

Parents usually unable/unwilling to “let it go”

Parental guilt might interfere with the decision process

The feeling that the child has already been through enough
Neonates and premature babies

Conflict Resolution

Understand Parameters within which decision
must be made







State and Federal Law
Guidelines from commissions, professionals groups, networks, etc
Community and Institutional Values
Professional Codes
Personalities and beliefs of persons involved
Internal and external power issues
Understand what help is available






Ethics committee
Professional organizations
Attorney
State legislative committees
Religious organizations
Courts (as a last resort)
Conflict Resolution …




Establish rapport with the parents and the
patient as soon as possible
Design an “overall”, “prospective” plan of care
Communicate face-to-face with the
parents/caretakers
Above all, respect the family’s wishes at all
times
Discussion, Consultation and Consensus
Practical aspects of Palliative care:

Can be provided regardless of the location: the
patient’s home, or in hospitals, hospices, etc.
Sedation/Analgesia
Treatment of dyspnea
Treatment of nausea and vomiting
Limitation of fluids/feeds
Treatment of seizures
Treatment of depression/anxiety
Education
Case Scenario II

Terri………….

Inmaculada Echevarría: "No es justo
vivir así"
20MINUTOS.ES. 18.10.2006

Head Trauma……….Brain death
EUTHANASIA

Life sustaining treatment can be withdraw if
there is futility?

Is this withdrawal equivalent to euthanasia?
Withdraw of LST

You should not withhold treatments that
alleviates pain or make the patient
comfortable.

‘You should provide if possible food and
water’


Terri’s case?
Law in PR
DERECHOS DEL
PACIENTE/FAMILIA
v
Los pacientes, muchos de estos garantizados por ley:
1. Todos los niños y sus familias deben tener el derecho al acceso al
tratamiento medico.
2. Todos los niños y sus familiares tienen el derecho a la privacidad,
confidencialidad de la información y cuidado respetuosamente.
3. Todos los niños y sus familiares tienen el derecho a tener cuidado
agradable y deseable que sostenga la relación niño-familia.
4. Todos los niños y su familia tiene el derecho a recibir
comunicación que es apropiada y completa para el conocimiento
del niño y también completa y comprensible para la familia.
Cont….
v
5. Todos los niños y sus familiares tienen el derecho a recibir el
cuidado de salud que esta enfocado a pediatría.
6. Todos los niños y sus familiares tienen el derecho al cuidado de
el niño que promueva el crecimiento físico y de desarrollo.
7. Todos los niños y sus familiares tienen el derecho a ser parte
del cuidado y proveerle con alternativas cuando esto sea posible.
8. Todos los niños y sus familiares tienen el derecho a expresarse
y a proveerle con soporte.
9. Todos los niños y sus familiares tienen el derecho a recibir
información completa de tal forma que se tomen las decisiones
de forma legal relacionado al cuidado del paciente.
SUMMARY

Never rush decisions

Avoid rigid rules

The decision to forgo curative therapy must be
followed by consideration of the child’s palliative
or terminal care needs

If in doubt what to do: err on the side of
sustaining life
SUMMARY

Do not expect complete consensus

Do not withdraw palliative or terminal care
designed to make the patient comfortable

Palliative treatments that may incidentally hasten
death may be justified if their primary aim is to
relieve suffering

The USA law does not support the concept of
active euthanasia
SUMMARY

Be compassionate

Be understanding to the different family
situations

Our job is not to resolve all the “family issues”

Provide quality time for the family to interact with
the child
REMEMBER
THERE IS
NO RIGHT
ANSWER