Rights to Self-Determination at the End of Life Vermont’s 2011 Patient-Directed Dying Bill

“In a certain state it is indecent to live longer “In a certain state it is indecent to live longer. To go vegetating in cowardly dependence on physicians and machinations, after the meaning of life, the right to life, has been lost, that ought to prompt a profound contempt in society.” Nietzsche (1844-1900)

Terminology Living wills / Advance directives - Legally binding documents that declare a patient’s wishes in the event of serious illness injury (appointed surrogate makes health care decisions) Euthanasia -Deliberate act to end the life of another person to relieve the person’s suffering -Voluntary euthanasia follows the wishes of a competent individual -Passive euthanasia allows the person to die (e.g. withdraw life support) Assisted suicide - End own life with the help of someone who provides knowledge, means or both Competency -person understands consequences and can communicate decision

Landmark U.S. Right to Die Legislation 1906 – Ohio 1st euthanasia bill drafted & defeated 1967 – Indiana 1st living will 1976 – NJ Supreme Court – Karen Ann Quinlan 1990 – US Supreme Court – right to demand /refuse treatment 1997 – Oregon 1st state to pass Death with Dignity legislation 2005 – Dr. Jack Kevorkian (Dr. Death) convicted of 2nd degree murder for assisting with voluntary euthanasia 2005 – Terry Schiavo 2006 -US Supreme Court ruling that states have the right to make their own laws regarding end-of-life care. 2006 – Oregon Department of Human Services bans the term “physician-assisted suicide”

Oregon Data 1997-2009: 460 individuals took medication to hasten death 23 prescriptions in 1997; 15 (65%) took medication 95 prescriptions in 2009; 53 (56%) took medication White (98%), College-educated (B.A. 48%), 55-84 (78%) >98% died at home and enrolled in hospice care 98% had health insurance Cancer most common diagnosis (80%) Loss of autonomy (96.6%), loss of dignity (91.5%) & and decreasing ability to participate in enjoyable activities (86.4%) 2009: No patients referred for psych evaluation Only 5% of physicians present at time of ingestion (decline from 22% in previous year

Background to the Vermont 2011 Patient Choice in Dying Bill Several previous attempts to pass legislation for physician assisted suicide in Vermont 2005 VT Death with Dignity Act introduced 2007 Bill defeated (82 support; 63 opposed); former Vermont Governor threatened to veto the bill if passed 2009 Bill not put to a vote 2011 Draft Bill is a near replica of the Oregon Death with Dignity Act Roman Catholic Church turned the vote in 2007

Politics Behind the Current Bill Proposal Death with Dignity National Center Dec 2011 -Executive Director met with Vermont lobbyists, grassroots activists and newly elected Governor to gather support for the bill Patient Choices Vermont Provided financial support to 2010 election campaigns for Governor, Chair House of Human Services Committee and Senate Health & Welfare Committee Hired a lobbyist to “work the legislature” Vermont Dept. of Disabilities, Aging & Independent Living Pro-choice on long-term care for elders & disabled individuals Feb 2011 Policy statement “support with restrictions”

Overview of VT 2011 Patient Directed Dying Bill Patient must be 18+, mentally competent and have a terminal illness with less than 6 months to live Patient makes 2 oral requests, at least 15 days apart to physician After 2nd request, patient gets a 2nd medical opinion, & if wishes to proceed makes a signed, written & witnessed request Physician must confirm terminal illness, mental competency, VT residency, offer alternatives, must wait 48 hours before writing script Lethal prescription for barbituates (secobarbitol /pentobarbitol) causes patient to fall asleep and die within a few minutes to a few hours Possibility of complications Health care facility exception Physician is not required to be present when patient ingests medication Physician must file report with health department Immunity from prosecution

Opposing Views Supporters Opponents Ensures the right of mentally competent, terminally ill patients to make their own decisions about the final days of their lives Reduces patient pain, suffering & loss of dignity at the end of life Should not impose one set of values on all individuals Increases end of life dialogue between physician / patient, better pain Rx Choice does not mean action; in Oregon 1 in 6 requests granted, 1 in 10 completed (460 people over 12 years); expect 8-10 cases /yr in VT Violates physicians’ hippocratic oath Slippery slope: vulnerable populations have less access to quality care; coercion as resources decrease Protects doctors when problems arise (good faith) No penalties to physicians for not reporting Discriminatory Hemlock Society – help people with disabilities go to court to request PAS; avoid institutionalization

http://www.youtube.com/user/VermontCIL http://www.youtube.com/watch?v=O6EAMD6NS9U

Your Turn U.S. citizens do not have the “constitutional right” to end their lives. They have the right to demand or refuse treatment. Accepted that physicians give patients increasing dosages of morphine for pain, knowing it increases the risk of death. Giving a lethal dosage of medication, requested by the patient, remains highly controversial. Would this even be an issue if end of life care improved? Is the “slippery slope” argument justified? Where should we draw the line? Whose choice is it anyway? Does autonomy extend to end of life decisions?

Key References American Public Health Association (2008). Patients’ Rights to Self-Determination at the End of Life. Policy number: 20086 Retrieved on-line from: http://www.apha.org Deborah Lisi-Baker (2003). Why VCIL Opposes Physician-Assisted Suicide. Retrieved online from: www.vaeh.org/resources/VCIL%20Opposes%20PAS.doc Dworkin, G. (2008). Should Physician-Assisted Suicide be Legalized? In D. Birnbacher, E. Dahl (eds.) Giving Death a Helping Hand, pp.2-14, Springer. Patient Choices Vermont (2011). http://patientchoices.org/ Merle Edwards-Orr (2011). Draft Policy Brief on Physician-Assisted Suicide. State of Vermont Department of Aging and Disabilities. Personal Communication. State of Oregon Department of Human Services (2011). Death with Dignity Act Annual Reports. Retrieved on-line from: http://www.oregon.gov/DHS/ph/pas/ar-index.shtml