End of Life Care

VII. Key Issues: Regulation & Reform >> A. Bioethics >> End of Life Care  (last update 12.19.17)

Overview

• Atul Gawande. Letting Go: What should medicine do when it can’t save your life? New Yorker, August 2, 2010
• Assessment of Last Acts Program Provides Recommendations for Future Direction (October 2002).
• Approaching Death: Improving Care at the End of Life (Institute of Medicine, 1997)
• Dignity and Dying: A Christian Appraisal, edited by John Kilner, Arlene Miller, and Edmund Pellegrino (William B Eerdmans Publishing, 1996).
• Dying Well: The Prospect for Growth at the End of Life, by Ira Byock (Riverhead Books, 1997).

Key Questions

What is the Cost of End-of-Life Care?

• Aldridge and Kelley 2015. We estimated that in 2011, among those with the highest costs, only 11% were in their last year of life, and approximately 13% of the $1.6 trillion spent on personal health care costs in the United States was devoted to care of individuals in their last year of life. Aldridge, Melissa D., and Amy S. Kelley. The Myth Regarding the High Cost of End-of-Life Care. American Journal of Public Health 105.12 (2015): 2411–2415. PMC. Web. 20 Dec. 2017.

Medical Directives

• MyDirectives.com lets consumers create and update advanced medical directives to help patients delineate a clear end-of-life plan, including audio and video messages. The directives are available online — anytime and anywhere in the world.
• Patients who document their end-of-life wishes using a special medical form get the specific care they want in their final days, according to a study published online in the Journal of the American Geriatrics Society.The study by researchers at Oregon Health & Science University looked at the growing use of the voluntary form, called Physician Orders for Life-Sustaining Treatment, or Polst. The document lets patients request or refuse certain medical treatments such as CPR or intensive care. The study is the largest on the topic so far and the first to look at preferences stated in the form and where people actually die (Wall Street Journal, 6.9.14).

Assisted Suicide

International Laws

Netherlands. In 2001, the Netherlands became the first country in the world to legalize euthanasia for patients who were suffering unbearable pain and had no prospects of a cure. In 2015, euthanasia accounted for 5,516 deaths, or nearly 4 percent of all deaths in the country. In 2016 a controversial proposal was introduced that would allow people who are not suffering from a medical condition to seek assisted suicide if they feel they have “completed life.” The government hopes to draft the law by the end of 2017 in consultation with doctors and ethicists.

State Laws

• 5 States With Physician-Assisted Suicide Statutes. As of 11.18.15, 5 states had physician-assisted suicide laws: CA, MT, OR, VT, WA.
  • OR (1997). Oregon voters adopted to create the nation’s first aid-in-dying law in 1994. Oregon’s Death With Dignity Act, which took effect in 1997, “authorized prescriptions for lethal doses when two doctors agree that a patient will die within six months and is freely choosing this path.”
  • WA (2008). In 2008, voters in Washington approved a law similar to Oregon’s.
  • MT (2009). By court order (see below).
  • VT (2013). In May, 2013 Vermont enacted a law permitting assisted suicide.
  • CA (2015). Gov. Jerry Brown signed California’s end-of-life options bill in October 2015.
• 23 States With Physician-Assisted Suicide Bills in 2015. According to Kaiser Health News (11.18.15), “Aid-in-dying bills were introduced this year in 23 state legislatures, plus in the District of Columbia, up from four last year, according to Compassion & Choices.
  • According to New York Times (2.7.14) “advocates are strongly promoting “death with dignity” bills in Connecticut and other states.”
• States Where Physician-Assisted Suicide Defeated.
  • MA (2012). “In 2012, after a political battle, voters in Massachusetts narrowly defeated such a measure.”

Court Decisions

• MT (2009). In response to lawsuits, the state court in Montana in 2009 “said that aid in dying is legal, distinguishing it from the crime of assisted suicide. By law and medical standards, only genuine residents who have relationships with local doctors can qualify for the prescriptions” so out-of-state patients cannot move in at the last minute.
• NM (2014). In January, 2014 “the New Mexico Supreme Court authorized doctors to provide lethal prescriptions and declared a constitutional right for “a competent, terminally ill patient to choose aid in dying.”

Public Opinion

• More than 2/3 Support Physician-Assisted Suicide. According to Kaiser Health News (11.18.15), a sizeable boost in public support for doctors helping terminally ill patients die – 68 percent favored it in 2015, a 17-point swing in two years, according to Gallup.
• Public Support Has Grown. A New York Times report (2/8/14) concluded: “Public support for assisted dying has grown in the past half-century but depends in part on terminology.
  • In a Gallup Poll conducted in May, for example, 70 percent of respondents agreed that when patients and their families wanted it, doctors should be allowed to “end the patient’s life by some painless means.”
  • In 1948, that share was 37 percent, and it rose steadily for four decades but has remained roughly stable since the mid-1990s. 
  • Yet in the same 2013 poll, only 51 percent supported allowing doctors to help a dying patient “commit suicide.””

Organizations

• Compassion & Choices. This advocacy group  provides advice on legal ways to reduce end-of-life suffering and perhaps hasten their deaths; the group counsels people who call for advice, “describing options but not encouraging them to end their lives or providing direct help.” Callers who seem to be mentally disturbed and suicidal, are referred to a suicide hotline. If they are facing imminent suffering and death and seek some control, the group urges them first to arrange for palliative or hospice care as they consider their next steps. Reportedly, about 3,000 patients, from every state, contact  the group each year.

News

• Eckholm, Erik. ‘Aid in Dying’ Movement Takes Hold in Some States. New York Times, February 7, 2014.

Analysis

• National Hospice Organization Statement Against Legalization of Assisted Suicide.
• Physician-Assisted Suicide — Oregon and Beyond. New England Journal of Medicine (2005).
• A National Survey of Physician-Assisted Suicide and Euthanasia in the United States. The New England Journal of Medicine (1998)
• “Euthanasia Reporting Controls ‘Failing’ in Holland” (Journal of Medical Ethics, 2/16/99)
• Oregon’s Terminally Ill Patients More Likely to Have End-of-Life Choices Respected, Study Finds
• Smith, Wesley. Forced Exit: The Slippery Slope From Assisted Suicide to Legalized Murder. Time Books, 1997.
• Society of Actuaries. Implications of the Cost of End of life Care: A Review of the Literature (December 2012).

Resources

• Physician-Assisted Suicide (University of Pennsylvania, Center for Bioethics Virtual Library)
• Death and Dying Web Links (St. Louis University School of Law)
• Euthanasia and Assisted Suicide Web Links (St. Louis University School of Law)
• Euthanasia (DMOZ Open Directory Project)
• Assisted Suicide/Right to Die Bibliography (Kennedy Institute of Ethics, Georgetown University)
• Robert Wood Johnson Foundation’s “Last Acts Campaign”
• “Who Dies at Home? Determinants of Site of Death for Community-Based Long-Term Care Patients” Fried, et al. 1999 (J Am. Geriatrics Soc.)