Mid-Atlantic Ethics Committee Newsletter
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MID-ATLANTIC ETHICS COMMITTEE NEWSLETTER A Newsletter for Ethics Committee Members in Maryland, The District of Columbia and Virginia Published by the Law & Health Care Program, University of Maryland Francis King Carey School of Law and the Maryland Health Care Ethics Committee Network Fall 2013 Inside this issue . ADVANCE DIRECTIVES, AUTONOMY, & DISABILITY Advance Directives, Autonomy, & Disability .................................1 Brooke Hopkins was emblematic of the people completing advance directives type of person who completes an advance and holding clinicians accountable for directive. A college English professor, honoring those directives. Disability Bioethics Loses A he was highly educated, financially rights advocates tell stories of how Founding Father .........................4 secure, and married to Peggy Battin, a disability stigma and prejudice threaten bioethicist whose lifework focused on the lives of people who are not terminally Bioethics, Wisdom, and the aid-in-dying advocacy. Most individuals ill but are considered by others to End-of-Life Conversation ...........5 who complete an advance directive do be “better off dead.” They are not as so to put limits on interventions that may confident that advance directives are in be used to prolong their life if they are Institute of Medicine Seeks their best interests. Brooke’s story spans in a terminal or end-stage condition or Public comment on End-of-Life both sides of the issue. permanently unconscious and unable Issues .........................................6 For the last five years of his life, to make decisions for themselves. Brooke (who died on his own terms ten Yet, misperceptions abound regarding days after the Henig article was published Case Presentation .....................7 when an advance directive is in effect, online) ambulated in a wheelchair and particularly when individuals are relied on others to groom and bathe and Calendar of Events ..................13 stabilized but reliant on life-supportive transfer him. He couldn’t swallow but technology. For the last five years of his appreciated the look, smell, and taste of life, Brooke used various life-prolonging food and the pleasure of shared company interventions—a ventilator, external during a meal. He enjoyed teaching oxygen, cardiac and diaphragmatic adult-education literature classes and The Mid-Atlantic Ethics Committee pacemakers, and feedings through a having long conversations with family Newsletter is a publication of the gastrostomy tube—after a bike crash in and friends. While he had bouts of Maryland Health Care Ethics 2008 broke his neck and paralyzed him pneumonia and other health crises after Committee Network, an initiative from the shoulders down. becoming paralyzed, he survived these of the University of Maryland Brooke’s story, recently featured in episodes with expert medical intervention Francis King Carey School of Law’s a New York Times Magazine article and the love and support of Peggy Law & Health Care Program. The by Robin Henig (July 17, 2013), raises and his circle of friends, family, and Newsletter combines educational important questions about how advance caregivers. Yet, consider the language articles with timely information directives are understood and interpreted. in the Henig article, describing the about bioethics activities. Each issue Health care professionals working in immediate aftermath of Brooke’s bike includes a feature article, a Calendar long term care and acute care settings crash: of upcoming events, and a case tell stories of dying patients whose If Peggy had been there and known presentation and commentary by local end-of-life wishes or best interests the extent of Brooke’s injury, she experts in bioethics, law, medicine, are ignored by family members or might have urged the rescuers not to nursing, or related disciplines. clinicians who insist on using life- revive him. Brooke updated a living Diane E. Hoffmann, JD, MS prolonging interventions that extend will the previous year, specifying that Editor the dying process and cause more harm than good. They advocate for more Cont. on page 2 © 2013 University of Maryland Francis King Carey School of Law Advance Directives The Mid-Atlantic Ethics Cont. from page 1 Committee Newsletter is published three times per year by should he suffer a grievous illness come off his life support machines. the Maryland Health Care Ethics or injury leading to a terminal He dictated a “Final Letter” to his Committee Network condition or vegetative state, he family clearly stating his wishes. Law & Health Care Program wanted no procedures done that Shortly after that, he developed a University of Maryland “would serve only to unnaturally pleural effusion (fluid in the lungs) Francis King Carey School of Law prolong the moment of my death that made his breathing difficult, even 500 West Baltimore Street and to unnaturally postpone or with the ventilator support. He became Baltimore, MD 21201 prolong the dying process.” … By delirious. Peggy opted to ignore 410-706-7191 the time Peggy arrived and saw Brooke’s letter so that he could be Diane E. Hoffmann, JD, MS, Editor her husband ensnared in the life- treated in the hospital. She reasoned Anita J. Tarzian, PhD, RN, sustaining machinery he hoped to that allowing him to die then, in that Co-Editor avoid, decisions about intervention way, didn’t feel right, that Brooke Contributing Editors: already had been made. (Henig, July “… had always spoken of a ‘generous Joseph A. Carrese, MD, MPH 17, 2013) death’ for which he was alert, calm, Associate Professor of Medicine Immediately after his injury, Brooke present and surrounded by people he Johns Hopkins University was not in any of the conditions loved.” In the end, about a full year Brian H. Childs, PhD stipulated in his living will. Is later, his death was just that. Director, Ethics & Organizational Henig’s portrayal a reporter’s fluke, Bill figures that many people in Development, Shore Health Systems or a reflection of a more widely held situations like Brooke’s (particularly Evan DeRenzo, PhD misunderstanding of when a person’s those who don’t have Brooke’s level Ethics Consultant living will actually goes into effect? of education, financial stability, or Center for Ethics Anthropologist and disability rights social support) don’t fare as well as Washington Hospital Center advocate Bill Peace attributes this Brooke, who had Peggy in his corner, Edmund G. Howe, MD, JD to a widespread disability bias that trying her best to let him die on his Professor of Psychiatry, threatens the lives of people with own terms. Bill writes: U.S.U.H.S. Department of disability. Bill wrote on his blog: “… [T]he fact is nationwide Psychiatry The descriptions of Hopkins resources for people with a disability Laurie Lyckholm, MD body are deeply offensive. The not are grossly inadequate. Talk about Asstistant Professor of Internal so subtle sub text is that life with patient centered care and autonomy Medicine and Professor of a disability, especially for a vent do not mean much when you are a Bioethics and Humanities, dependent quad, is filled with pain young man facing life in a nursing Virginia Commonwealth and suffering. Such a life is terrible home. Suicidal thoughts … are a School of Medicine for Hopkins and by extension his logical reaction to an impossible Jack Schwartz, JD wife. This point is made with the situation.” Adjunct Faculty subtlety of a brick thrown through Bill, a paraplegic (he prefers the University of Maryland a plate glass window. Prior to his term “cripple” as more honest), Francis King Carey School of injury Henig makes it clear that has had many experiences on the Law Hopkins was a virile man who receiving end of disability bias. He Henry Silverman, MD, MA traveled the world. He was a larger wrote about one such experience in Professor of Medicine than life figure and to be rendered The Hastings Center Report last year. University of Maryland a quadriplegic is a fate worse than After developing his first serious Comments to: death and his only saving grace is wound since he was paralyzed over 30 [email protected] his powerful intellect. (Peace, July years ago, a hospitalist he had never 17, 2013) met explained to him, at two in the Both Bill and Peggy—although from morning, after he had endured several The information in this newsletter very different positions—highlight hours of vomiting, that his situation is not intended to provide legal advice or opinion and should not be how respecting individual autonomy was grave. His wound might never acted upon without consulting an in the “real world” is not as simplistic heal. The antibiotics could cause attorney. as many like to think. About a year permanent organ damage. He would before Brooke’s death, he decided be financially ruined by the care he he was ready to die and wanted to would need over the next six months. 2 Mid-Atlantic Ethics Committee Newsletter He was “looking at a life of complete feeding tube or a ventilator should not Until we do better to address health and utter dependence” (Peace, 2012). receive a feeding tube or ventilator, disparities among disabled persons Then he offered Bill the option of period. But for patients who are and pervasive disability bias, our foregoing treatment and choosing not dying but facing disability and progress in providing better end-of-life comfort care instead. I’m happy to reliance on medical technology care across the board will be thwarted. report that Bill is physically healed to live, their requests to stop life A good place to start is by educating and enjoying his new bike, which support should not be met with a ourselves about disability advocacy. replaced his kayak. But his memory of mere confirmation of their decision- (See BOX for suggestions.) that conversation with the hospitalist making capacity, but with a concerted still haunts him.