1. JENNIFER K WALTER, MD, PHD, MS CHILDREN’S HOSPITAL OF PHILADELPHIA ETHICAL ISSUES IN PEDIATRIC PALLIATIVE CARE

2. THE CHALLENGES How? Who? What?

3. HOW DO WE DECIDE? Substituted Judgment vs. Best Interest Standard

4. 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 5 th Ed 2001

5. 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 5 th Ed 2001

6. 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.

7. MEDICAL CONDITION INTERVENTION EXPECTED QUALITY OF LIFE

8. 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 6 th Ed 2006

9. 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 5 th Ed 2001; Hastings Center 1987

10. 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 5 th Ed 2001

11. 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

12. WHAT CHOICES? Withholding or withdrawing life- sustaining therapies Stopping artificial nutrition and hydration Discussing brain death

14. 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.

15. ARTIFICIAL NUTRITION AND HYDRATION

16. 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.

17. 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

18. 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.

19. CONCEPT OF BRAIN DEATH 1968 A 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.

20. CONCEPT OF BRAIN DEATH 1968 A 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.

21. 1980’S President’s Commission for Study of Ethical Problems in Medicine and Biomedical and Behavioral Research released a report:

22. 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.

23. UNIFORM DETERMINATION OF DEATH ACT Draft state law approved in 1981 by: AMA, ABA, President’s Commission for Study of Ethical Problems in Medicine

24. 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”

25. EXEMPTIONS: NY AND NJ New Jersey: 13:35-6A.6 Exemption to accommodate personal religious beliefs Death 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.

26. 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

27. 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

28. DATA: LAYPEOPLE Review of 43 articles studying attitudes about brain death covering 18,000 people Participants 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

29. 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

30. 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

31. QUESTIONS?