1. Withholding and Withdrawing Care Walter S. Davis, MD UVA Center for Biomedical Ethics Assistant Professor, Physical Medicine and Rehabilitation

2. Withholding Vs. Withdrawing Active Vs passive distinction Active Vs passive distinction Conventional wisdom in medicine said withdrawing is “harder” than withholding Conventional wisdom in medicine said withdrawing is “harder” than withholding 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 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” Benefits Benefits –health benefits - treatment of disease or symptoms –quality-of-life benefits - improved mental status or physical comfort Burdens Burdens –increased pain, suffering, debilitation –reduced quality of life

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

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

6. Advance Directives The great hope of the 80’s and 90’s The great hope of the 80’s and 90’s May not significantly affect the aggressiveness or cost of ICU care May not significantly affect the aggressiveness or cost of ICU care Do not change decision-making in the ICU Do not change decision-making in the ICU Can be difficult to interpret for a given patient Can be difficult to interpret for a given patient What is “terminal”? What is “terminal”? What is “extraordinary means”? What is “extraordinary means”? What is “quality of life”? What is “quality of life”? Focus now may turn towards “advance care planning” Focus now may turn towards “advance care planning”

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

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

9. Persistent Vegetative State (PVS) First described in 1972 First described in 1972 No evidence of awareness of self or others - unable to interact No evidence of awareness of self or others - unable to interact Intermittent sleep-wake cycles Intermittent sleep-wake cycles Some preserved cranial and spinal reflexes Some preserved cranial and spinal reflexes No purposeful behavioral responses No purposeful behavioral responses New guidelines recommend the term “vegetative state” and specify diagnostic criteria and an algorithm New guidelines recommend the term “vegetative state” and specify diagnostic criteria and an algorithm

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

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

12. Quinlan, 1975 21 yo NJ woman with severe anoxic brain injury after alcohol/drug overdose 21 yo NJ woman with severe anoxic brain injury after alcohol/drug overdose Dx: PVS Dx: PVS Required ventilator and artificial feeding/hydration Required ventilator and artificial feeding/hydration Father petitioned to stop vent several months later Father petitioned to stop vent several months later Opposed by physicians, backed by local court and State Attorney General Opposed by physicians, backed by local court and State Attorney General NJ Supreme Court granted request NJ Supreme Court granted request KQ died 10 years later 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 25 yo with PVS after MVA 25 yo with PVS after MVA Required artificial feeding and hydration but not ventilator Required artificial feeding and hydration but not ventilator After 4 years, parents asked that hospital stop tube feedings - hospital refused After 4 years, parents asked that hospital stop tube feedings - hospital refused 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 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 NC died 1990, 13 days after feeding tube removed NC died 1990, 13 days after feeding tube removed

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

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

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