1. Withholding and Withdrawing Treatment Walter S. Davis, MD UVA Center for Biomedical Ethics and Humanities Associate Professor, Physical Medicine and Rehabilitation

2. Withholding Vs. Withdrawing u Active Vs passive distinction u Conventional wisdom in medicine said withdrawing is “harder” than withholding u This has been challenged by modern medical ethicists - withholding a treatment that has not been tried is “morally” harder than withdrawing one that has not proven beneficial

3. “Benefits/Burdens Standard” u Benefits l health benefits - treatment of disease or symptoms l quality-of-life benefits - improved mental status or physical comfort u Burdens l increased pain, suffering, debilitation l reduced quality of life

4. What do we know about patients’ intensive care experiences? u There is evidence of significant suffering in ICU patients with regards to pain, dyspnea, anxiety, sleep disturbance, depression u A substantial majority of physicians managing ICU care did not specifically discuss prognosis with families u 54% of family representatives did not understand the diagnosis and prognosis immediately following a conference with the treating MD u MD’s do 75% of the talking in family conferences

5. Challenges Unique to the ICU Setting u Often no prior relationship with patient or family u Traditional separation of intensive care/palliative care u Patient often not a participant in discussions u Families unable to participate in high- tech care

6. Advance Directives u The “great hope” of the 80’s and 90’s u Do not significantly affect the aggressiveness or cost of ICU care u Do not change decision-making in the ICU u Can be difficult to interpret for a given patient u What is “terminal” u What is “extraordinary means” u What is “quality of life” u Still an important piece of the puzzle

7. Brain Death u Patient is considered legally dead u Criteria for diagnosis include combination of neurologic physical exam and testing (apnea test/EEG) u Cardiopulmonary support sometimes continued until family or others arrive u Conceptually simple, but can be difficult in practice

8. Coma u Relatively short-term (weeks) u Eyes closed, no evidence of wakefulness u No evidence of communication or purposeful movement u Often progresses to PVS

9. Vegetative State (formally Persistant VS) u First described in 1972 u No evidence of awareness of self or others - unable to interact u Intermittent sleep-wake cycles u Some preserved cranial and spinal reflexes u No purposeful behavioral responses u Timing and diagnostic parameters are under debate

10. “Locked-In” Syndrome u Patients are awake, alert, with normal cognition (to the extent that it can be tested) u Often caused by pontine infarction or hemorrhage u Profound quadriplegia, some preserved eye movements u Can be confused with coma or PVS

11. Landmark Cases in Futility Ethics u 1975 - Karen Ann Quinlan u 1983 - Nancy Cruzan u 1995 - Hugh Finn u 2005 – Terri Schiavo

12. Quinlan, 1975 u 21 yo NJ woman with severe anoxic brain injury after alcohol/drug overdose u Dx: PVS u Required ventilator and artificial feeding/hydration u Father petitioned to stop vent several months later u Opposed by physicians, backed by local court and State Attorney General u NJ Supreme Court granted request u KQ died 10 years later

13. New Jersey Supreme Court in Quinlan, 1975 “the State’s interest (in the preservation of life) weakens and the individual’s right of privacy grows as the degree of bodily invasion increases and the prognosis dims. Ultimately, there comes a point at which the individual’s rights overcome the State’s interest.”

14. Cruzan, 1983 u 25 yo with PVS after MVA u Required artificial feeding and hydration but not ventilator u After 4 years, parents asked that hospital stop tube feedings - hospital refused u Final decision by U.S. Supreme Court affirmed competent person’s right to refuse any life-sustaining treatment, and for incapacitated persons, left to the States the issue of whether legal standard of substituted judgment would be satisfied by only verbal statements u NC died 1990, 13 days after feeding tube removed

15. Finn, 1995 u 44 yo television newscaster with PVS after MVA u Wife, sister, and physician wanted feeding tube removed u Finn’s parents and brothers disagreed u VA Governor James Gilmore intervened to block removal of tube, citing the State’s interest in “protecting its most vulnerable citizens” u Decision overruled by local and State Supreme Court u Hugh Finn dies 1998 after removal of tube u Court refuses to force State to pay wife’s legal fees

16. Schiavo, 2005 u 1990 - 27yo woman suffers cardiac arrest secondary to potassium imbalance, with subsequent anoxic brain injury and PVS u Husband Michael Schiavo is guardian u Terri’s parents, the Schindlers, oppose removing Terri’s feeding tube u Florida Gov. Jeb Bush intervenes in 2003 u Florida House passes “Terri’s Law” that allows one-time stay in certain cases

17. Terri Schiavo’s CT scan u Left image shows brain CT of a normal 25 year old u Right image shows Terri Schiavo’s brain CT at the time of the debate about her withdrawal decision

18. Who opposes withholding and withdrawing care, and why? u Advocacy groups for persons with disabilities (NDY) u “Right to Life” groups u Some religious groups and organizations

19. Withdrawing and Withholding Treatment II – The Role of Advance Care Planning Walter S. Davis, MD Center for Biomedical Ethics Department of Physical Medicine and Rehabilitation University of Virginia

20. Advance Directives u “Living wills” u “Power of Attorney for Healthcare” u “Healthcare proxy” u Appointing a surrogate decision maker is usually considered the most useful AD u Details and circumstances of clinical situations are dynamic and often difficult to predict (sometimes) u Legal requirements vary by state, and are summarized at caringinfo.org

21. Advance Care Planning u Getting information on tx options u Deciding on treatment preferences u Getting info on how disease or serious illness might progress u Discussion w MD about treatment goals, risks, benefits u Sharing personal values with loved ones u Using AD to put into writing preferences about life-sustaining treatment specific to the patient

22. Problems with AdvanceDirectives u In a survey of almost 5,000 charts: l 66% were durable power of attorney l 31% were standard living wills or other written instructions l Only 3% provided additional instructions for medical care, and even fewer contained specific instructions about the use of life- sustaining medical treatment

23. More problems… u Legal requirements and restrictions may be counterproductive l Obtaining witness signatures and notarizing may be difficult to make happen in a Dr.’s office l State hierarchy laws can be inflexible and may not apply in certain situations l The emphasis should be on the discussion about end of life care, and not on signing the legal document

24. Issues to be considered in end-of-life discussions u Overall attitude towards life u Attitudes about independence and control, and the loss of them u Religious or spiritual beliefs and moral convictions u Views on health, illness, death and dying u Feelings toward doctors, other caregivers, and the “culture) of modern medical care

25. Opportunities for discussion about end-of-life issues u Significant life events – marriage, birth, death of a loved one, retirement, birthdays, etc. u While drawing up a will or other estate/financial planning u Before and after annual physicals, particularly when the patient has one or more chronic conditions

26. The role of the physician u Explaining and informing on the illness/disease process – to pt and proxy u Discussion of pain management options u Learning the patient’s views on quality of life, role of spirituality/religion u Working out the details of how the plans will be carried out u Education and discussion on hospice and palliative care

27. Ethics consult case – MR C u 53 yo with ESRD, schizophrenia, admitted with shortness of breath u Dx’d renal failure, fluid overload, recommend dialysis u Pt refuses dialysis, but wants to be a “full code” u Pt’s family wants him to receive dialysis

28. Ethics consult case – Mr C u Pt found to have decisional capacity by psychiatry consult team, schizophrenia not an issue in this decision u Renal Clinic note found indicating patient did not want dialysis in any situation, but did want to be full code otherwise u Further discussions with patient revealed he did not want to die “choking for air,” but would be DNR if sxs treated

29. Ethics Consult case - CG u 69 yo with ALS (amyotrophic lateral sclerosis) u AD appoints daughter as POA for healthcare and specifies durable DNR u CG plans to die at home with hospice care, but is in a rehab center for a one week stay to get mobility equipment and training for family u Falls from his wheelchair, admitted to ED short of breath, dx’d with pneumothorax