J E N N I F E R K W A LT E R , M D , P H D , M SC H I L D R E N ’ S H O S P I T A L O F P H I L A D E L P H I A

ETHICAL ISSUES IN PEDIATRIC PALLIATIVE CARE

THE CHALLENGES

How?

Who?

What?

HOW DO WE DECIDE?

Substituted Judgment vs.

Best Interest Standard

SUBSTITUTED JUDGMENT

• Only for once-competent patients

• Only if reason exists to believe that a decision can be made AS THE PATIENT would have made it

Beauchamp and Childress Principles of Biomedical Ethics 5th Ed 2001

BEST INTEREST STANDARD

• Surrogate Decision-Maker• Highest net benefit among the available options• Assigning different weights in each option to patient’s

interests• Subtracting inherent risks or costs (pain, suffering)

Beauchamp and Childress 5th Ed 2001

MEDICAL INDICATIONS STANDARD

• Medical indications:• For incompetent patients only need to know what is

“medically indicated”

• Problematic:• Only looks at benefit from tx, doesn’t acknowledge the

burdens• Impossible to determine what will benefit a patient

without presupposing some QUALITY OF LIFE standard.

MEDICAL CONDITION

INTERVENTION

EXPECTED

QUALITY OF LIFE

QUALITY OF LIFE

• Quality of Life Criterion: • deals in pain and suffering, loss of functioning, etc.

• Different for Children than Previously Competent adults:• May have expressed preferences while competent• History of preferences or lifestyle that gives info of what

they would prefer in these circumstances.

Jonsen, Siegler, Winslade Clinical Ethics 6th Ed 2006

QUALITY OF LIFE

• Should not concern the social worth of the patient• Examine the value of the life for the person who

must live it. • If quality of life sufficiently low that an

intervention produces more harm than benefit for the patient, it is justifiable to withhold or withdraw treatment.

Beauchamp and Childress 5th Ed 2001; Hastings Center 1987

QUALITY OF LIFE

• Should exclude several conditions from consideration when determining QOL, e.g., intellectual disability • Proxies should NOT:• confuse QOL with value of that patient’s life for others.

Beauchamp and Childress 5th Ed 2001

WHO SHOULD DECIDE?

• Children’s parents have a legitimate interest in making decisions for their children. 1. Parents care deeply about child’s welfare and know their

needs better than others. 2. Parents bear the consequences of treatment choices.3. Parents have right (within limits) to raise kids according

to own values and transmit those values. 4. Family is a valuable social institution and requires

freedom to make important decisions about the welfare of the incompetent members of the family.

Buchanan and Brock Deciding for Others 1990

WHAT CHOICES?

•Withholding or withdrawing life-sustaining therapies•Stopping artificial nutrition and hydration•Discussing brain death

• Fear of not being able to stop therapy should not prevent beneficial therapies from being trialed. • Clinicians should provide patient and family

adequate information about risks, discomfort, side effects, potential benefits and uncertainty of whether treatment will succeed. • Clinicians should make a recommendation, not

just offer a menu, based on patient/family’s values. • Patients or parents cannot compel physicians to

provide treatment they believe is highly unlikely to benefit the patient.

ARTIFICIAL NUTRITION AND HYDRATION

RECOMMENDATIONS

• Children capable of safely eating and drinking who want to eat, should be provided food

• ANH are a medical intervention that may be withheld or withdrawn for same types of reasons that justify withholding or withdrawing other medical treatments

• Whether medical interventions should be provided to a child are based on whether the intervention provides net benefit to the child

• Use best interests of child to decide, with parents having discretion, what is permissible is not required.

• ANH can be ethically withdrawn from a child who permanently lacks awareness and ability to interact with the environment.

• ANH can be withdrawn when only prolong or add morbidity to dying process

• Parents should be fully involved and support decision for it to be instituted.

BRAIN DEATH VS PVS/COMA

• Coma: state of unconsciousness lasting more than 6 hours • Cannot be awakened• Fails to respond to painful stimuli, light, sound• Lacks normal sleep-wake cycle• Does not initiate voluntary actions

• Persistent Vegetative State: • wakeful unconscious state that lasts longer than a few

weeks.• Lack cognitive function and highly unlikely to regain

higher functions• Brainstem generally intact

RECENT CASES: JAHI MCMATH

Applying the Uniform Determination of Death Act was violation of constitutional religious and privacy rights.

Because her heart was still beating, she was still alive.

CONCEPT OF BRAIN DEATH

1968A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death published in JAMA.

CONCEPT OF BRAIN DEATH

1968A Definition of Irreversible Coma: Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death published in JAMA. • “Any organ, brain or other, that no longer

functions and has no possibility of functioning is for all practical purposes dead.” • Provided pragmatic guidance for what was

ethically permissible for patients with irreversible coma.

1980’S

President’s Commission for Study of Ethical Problems in Medicine and Biomedical and Behavioral Research released a report:

1980’S

President’s Commission for Study of Ethical Problems in Medicine and Biomedical and Behavioral Research released a report:• “Defining Death: Medical, Legal, and Ethical

Issues in the Determination of Death” • Death occurred when the “body’s physiological system

ceases to constitute an integrated whole” and that integration depends on the integrity of the brain.

UNIFORM DETERMINATION OF DEATH ACT

• Draft state law approved in 1981 by:• AMA, ABA, President’s Commission for Study of Ethical

Problems in Medicine

UNIFORM DETERMINATION OF DEATH ACT

• Draft state law approved in 1981 by:• AMA, ABA, President’s Commission for Study of Ethical

Problems in Medicine

• Determination of Death: • “irreversible cessation of circulatory and respiratory

functions” OR• “irreversible cessation of all functions of the entire brain,

including the brainstem”

EXEMPTIONS: NY AND NJ

New Jersey: 13:35-6A.6 Exemption to accommodate personal religious beliefsDeath shall not be declared on the basis of neurological criteria if the examining physician has reason to believe … that such a declaration would violate the personal religious beliefs of the patient. In these cases, death shall be declared, and the time of death fixed, solely upon the basis of cardio-respiratory criteria.

CONTINUED INTEGRATION EVEN DURING TOTAL BRAIN FAILURE

Those meeting criteria for brain death on ventilators:

• Circulation• Digestion• Excretion of waste products• Temperature control• Wound healing• Fighting infections • Continued growth, development, gestation of fetus

NOT DEAD?

• There’s compelling evidence that “death by neurologic criteria” is not based in SCIENTIFIC understanding of death.

• Instead it is functioning like a legal fiction: • One example: legally blind

DATA: LAYPEOPLE

Review of 43 articles studying attitudes about brain death covering 18,000 peopleParticipants do NOT understand

• Uncontested biological facts about brain death• Legal status of brain death• That organs are procured from brain dead patients while

their hearts are still beating and before removal of ventilators

WHAT CAN WE SAY?

• Irreversible destruction of most neurological function • no possibility of a meaningful recovery • such as ability to regain consciousness or ability to breathe spontaneously

WHAT CAN WE SAY?

• Irreversible destruction of most neurological function • no possibility of a meaningful recovery • such as ability to regain consciousness or ability to

breathe spontaneously

•No harm or wrong done to patients who donate organs when designated dead by neurologic or circulatory criteria

QUESTIONS?