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Intersecting worlds of clinical ethics, spiritual care and palliative care

Intersecting worlds of clinical ethics, spiritual care and palliative care. Joanne Henley, M.Div , BCC Deborah Love, JD, MBA, MA Greg Robins, PA. Thank you!. Pathway. Last night: Pre-conference; palliative care in behavioral health - Greg Today:

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Intersecting worlds of clinical ethics, spiritual care and palliative care

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  1. Intersecting worlds of clinical ethics, spiritual care and palliative care Joanne Henley, M.Div, BCC Deborah Love, JD, MBA, MA Greg Robins, PA

  2. Thankyou!

  3. Pathway Last night: Pre-conference; palliative care in behavioral health - Greg Today: • The evolving role of clinical ethics in healthcare (9:00 – 10:30) • Ethics and religion at the beginning of life and the end of life (10:45 – 12:30) • Shared decision making demonstration (2:30 – 3:45) • Exchange: starting or reviving your ethics committee (4:00) Tomorrow: When patients are hoping for a miracle – Joanne & Greg (10:00- 11:30)

  4. The evolving role of clinical ethics in healthcare Grounded decision making

  5. Michelangelo Philosophy

  6. Ethics is a practical competence – something we all do, and that we get better at the more we ‘practice’ it. Each of us tries to live a good life and be a good person. ~ Nancy M.P. King, JD NH Clinical Ethics Committee Launch

  7. Introductions (at your tables) • Name • Where you work & in what capacity • Someone other than a parent who was highly influential in your moral development

  8. Our aim in moral development • Ethical Sensitivity • Ethical Reasoning • Ethical Commitment • Ethical Action Based on: Rest, JR and Narvaez, ed. Moral Development in the Professions: Psychology and Applied Ethics, 1994, 22-25

  9. TECHNOLOGICAL ADVANCES SOCIAL ACTIVISM BIOETHICS LEGAL ACTION

  10. Technological advances 1950s 1960s 1953/1978

  11. New technological advances 1954 1967 Uniform Determination of Death Act 1968 Harvard Ad Hoc Committee on Brain Death 1980 1980’s

  12. Changing social values and ethical awareness Buck v Bell 1927 Statute upheld Overturned 1974 Tuskegee Syphillis study 1932- 1972 Roe v Wade 1973 Griswold v Connecticut 1965

  13. What’s next? Birth outside womb Gene editing Artificial intelligence Patient control of medical records – stored on cloud

  14. Just because we can… does that mean we should? That’s the way it is. Is that the way it ought to be? NH Clinical Ethics Committee Launch

  15. Bioethics: a field, not a discipline • MoralPhilosophy • Virtue • Deontology • Teleology • Disciplines • Medicine • Law • Theology • Social sciences • Humanities Credit to Arlene Davis

  16. Case discussion – through a different lens

  17. Ethics and religion at the beginning of life and the end of life You are the ethics consult team

  18. Beginning of life

  19. Beginning of life Baby Doe (1982) – Bloomington, IN • Baby born with Down syndrome and esophageal atresia (food cannot enter stomach), a condition treatable by surgery • Parents refused treatment and baby died 6 days later • President Reagan instructed Health & Human Svcs to notify providers that failure to provide life-sustaining treatment to handicapped infants would be considered violation of anti-discrimination law

  20. Beginning of life Baby Jane Doe (1983) – Long Island, NY • Baby born with open spinal column - meningomyelocele (severe form of spina bifada), hydrocephaly, and microcephaly. Without surgery, she was expected to live to age 2; with surgery to age 20. Even with surgery, expected to be paralyzed with kidney damage, epilepsy and severe brain damage. • Parents, who were Roman Catholic, chose conservative measures (antibiotics and covering hold with bandages) after consulting with clergy • Vermont right-to-life advocate sued to order surgery and appoint a guardian; initial judgment overturned on appeal • Baby Doe hotline called. HHS sought discrimination determination by NY CPS, U.S. District Court and U.S. Court of Appeals. All ruled that the actions were non-discriminatory. Court of Appeals ruled that the Rehabilitation Act did not allow HHS to interfere in treatment of newborns

  21. Beginning of life • Hotlines eventually discontinued – often caused interventions without merit • Several hospitals established infant review committees – early form of ethics committees

  22. Beginning of life – North Carolina Decision maker can refuse treatment if: • The infant is chronically and irreversibly comatose; OR • Providing the treatment – • Will merely prolong the infant’s death; or • Would not be effective in ameliorating or correcting all of the infant’s life-threatening conditions; or • Would be futile in terms of the survival of the infant; OR • Providing the treatment would be virtually futile in terms of the infant’s survival, and the treatment, under these circumstances, would be inhumane. Note: age of viability is moving downward

  23. End of life

  24. Patient rights Cardozo: “Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient's consent, commits an assault, for which he is liable in damages.” Schloendorff V. Society of New York Hospital (1914) NH Clinical Ethics Committee Launch

  25. Withdrawal of treatment: • In re Quinlan 70 N.J. 10 (1976) Apr. 1975: 21 years old – unresponsive after party with drugs + alcoholParents fought to withdraw ventilator; court permitted withdrawal Court held: • Suggested use of a committee to resolve ethical issues • Physicians exempted from civil and criminal liability • Because Catholic, did not withdraw ANH • Died 1986 from pneumonia • Cruzan v. Director, Missouri Dept. of Health 497 U.S. 261 (1990)30 y/o in auto accident. Parents sought to w/draw ANH after 4 years in persistent vegitative state (PVS). • Court recognized that withdrawal of treatment (AN&H) same as refusal of treatment • Recognized state’s right to define standards for proof of patient’s wishes Ethics at end of life

  26. Ethics at end of life

  27. Refusals are honored too In Re: Helga Wanglie, Fourth Judicial District (Dist. Ct., Probate Court Division) PX-91-283. Minnesota, Hennepin County • 86 y/o woman • PVS and hospital wanted to withdraw treatment on grounds it was non-beneficial • Husband wanted treatment maintained based on value of life • Court decided in favor of husband • Died 3 days after court decision (July 4, 1991)

  28. WHO DECIDES?If patient does NOT have capacity – priority order NC • Health care agent appointed in a Health Care Power of Attorney (HCPOA) – unless clearly suspended by guardianship order • Court-appointed guardian • Agent (attorney-in-fact) appointed in a durable power of attorney that includes the power to make health care decisions • Patient’s husband or wife • A majority of the patient’s reasonably available parents and adult (18+) children • A majority of the patient’s reasonably available adult (18+) siblings • An adult (18+) with an established relationship with the patient who is acting in good faith and can reliably convey the patient’s wishes • A physician – with agreement of another physician Ethics at end of life

  29. HOW do we decide?Focus on the patient • Expressed wishes • Advance care planning documents • Verbal expressions to family • Documented verbal expressions to care team • Substituted judgment - how the patient might decide based on the patient’s generally expressed values and preferences • Best interests of the patient Ethics at end of life

  30. HOW do we decide? • MoralPhilosophy • Virtue • Deontology • Teleology • Disciplines • Medicine • Law • Theology • Social sciences • Humanities • Methods • Principlism • Casuistry (e.g., 4-box method) • Narrative • Rights • Feminist • Universal Credit to Arlene Davis

  31. Principlism in Bioethics (Beauchamp & Childress) • AutonomyPrimary moral consideration: respect for persons • BeneficencePrimary moral consideration: best interest of the patient • NonmaleficencePrimary moral consideration: avoid causing harm • JusticePrimary moral consideration: fairness Ethics at end of life

  32. 4-Box Model (Jonsen, Siegler, Winslade)

  33. YOUare the ethics consult team

  34. MediationShared decision making

  35. Shared Decision Making in ICUs: An American College of Critical Care Medicine (ACCM) and American Thoracic Society Policy Statement Crit Care Med 2016, 44:188-201 “Shared decision making is a collaborative process that allows patients, or their surrogates, and clinicians to make healthcare decisions together, taking in account the best scientific evidence available, as well as the patient’s values, goals, and preferences.” p. 190 Ethics Consultant Retreat

  36. Mediators: • Listen freshly

  37. To listen is to continually give up all expectation and to give our attention, completely and freshly, to what is before us, not really knowing what we will hear or what that will mean… To listen is to lean in, softly, with a willingness to be changed by what we hear.Mark NepoThe Exquisite Risk, 2005

  38. Mediators: • Listen freshly • Capture the perspectives of all parties The more neutral you can be,the more power you have • Demonstrate respect for all views • Exercise empathy – cognitive and emotional

  39. Mediators look for - • Positions • Interests

  40. De-escalating conflict and anger • Empathically search for the triggering event/feeling • Ennoble the anger

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