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The slippery slope of decision making for persons with dementia
Legal and Ethical Issues
The Slippery Slope of Decision Making for Persons With Dementia INCE PASSAGE of the federal Patient Self-Determina-
S tion Act in 1991, health professionals have encouraged the writing of advance directives. A well-written living will
and durable power of attorney can result in fewer legal and ethical problems regarding the person's health care. However, advance directives may provide only partial guidance for decision making if the person has dementia, as I learned when my 75-year-old mother was hospitalized. Seven years ago, my mother wrote a living will stating that she does not want to be kept alive with technology, and she appointed me with durable power of attorney. When she developed dementia and moved to a nursing home, I became her surrogate decision maker and signed a do-notresuscitate directive for her. Even with these careful preparations, her health professionals and I have felt conflicted about how best to carry out her intentions. "Your mother's severe abdominal pain indicates a ruptured appendix," the surgeon said. "She may have cancer, too, but we won't know without surgery." He, eight other physicians, a staff nurse, and I stood in a circle around my mother's hospital bed. "My mother doesn't realize she is in a hospital, although she knows her abdomen hurts," I replied. '~Already, she has pulled out her IV twice because she doesn't remember what it is. She wouldn't understand surgery, so I don't see how we can go ahead with it." "Without surgery," said the surgeon, "she will die a very painful death. I consider surgery to be comfort care." "Treating her is a slippery slope," I said. "The question isn't whether to intervene, but to what extent. I agreed for her to be hospitalized, which I didn't think I ever would do. Staff examined her, drew blood, and started an IV. They took x-rays, gave her contrast solution to drink, inserted a rectal tube, and did a CT scan. Each procedure frightened her, and so I stayed with her to reassure her. Now you recommend surgery. She could end up with a colostomy or other complications. Where does it stop?" "We won't do a colostomy without checking with you," the surgeon said. "We'll only do surgery."
MIRIAM E. CAMERON,PHD, MS, MA, RN CenterAssociate Centerfor Bioethics Universi{yofMinnesnta 220 DakotaAve South Minneapolis, MN55416-1016 Copyright © 1998 byW.B. Saunders Company 8755-7223/98/1401-0004503.00
6
"None of us wants her to die in pain from a ruptured appendix or abdominal obstruction," I said as I signed the consent form. When they had left, I sat by my mother's bedside crying quietly so I would not upset her. She did not realize what had happened, but she patted me on the arm and said, "It will be all right." The surgeons removed her appendix, which was healthy, and a baseball-sized malignant tumor from her colon. After surgery, she was frightened and could not be comforted. "How did I get into this?" she kept moaning. Over and over, those of us caring for her explained, "You had surgery, and you'll feel better soon." "We hope we got all the cancer," the surgeon told me the next day, "but there might still be more. If it metastasizes, it could go to her lungs or liver." "Then she could develop breathing problems or jaundice," I said, "and we'll have to make more decisions." Looking for guidance, I had a literature search done. Only one article offered help. In determining how aggressively to treat persons with dementia, Loewy (1987) suggested taking into account the following: (1) the immediacy of the threat, (2) the relievable suffering caused by the disease, (3) the suffering produced by the treatment, and (4) the person's capacity for sustained understanding of and cooperation with the regimen. These guidelines point to a middle road rather than an absolutist stand requiring that all forms of life-sustaining treatment be given or that none be given. They provide a way to determine which interventions to use and which ones to limit. My mother is in the hospital again. Her health professionals and I are using Loewy's (1987) guidelines to make treatment choices so she goes back to her nursing home soon. Because she is at peace, I am not worried about her dying, but rather about her suffering. I hope we provide a peaceful environment so she can complete her life, let go when she is ready, and die surrounded by loved ones. People like my mother are capable of some social interaction and self-awareness. They can love and be loved, feel pain and pleasure. We who are their decision makers, both family and health professionals, must accept our inescapable obligation to make the often agonizing choices that tailor treatment to the person. Advance directives provide some guidance, but not enough. As the population ages and more people develop dementia, research and analysis are needed so we make wise decisions for them. Reference
Loewy, E. H. (1987). Treatment decisions in the mentally impaired: Limiting but not abandoning treatment. New England Journal ofMedicine, 31Z 1465-1469.
JournalofProfessionalNursing, Vol 14, No 1 (January-February), 1998: p 6
The Slippery Slope of Decision Making for Persons With Dementia INCE PASSAGE of the federal Patient Self-Determina-
S tion Act in 1991, health professionals have encouraged the writing of advance directives. A well-written living will
and durable power of attorney can result in fewer legal and ethical problems regarding the person's health care. However, advance directives may provide only partial guidance for decision making if the person has dementia, as I learned when my 75-year-old mother was hospitalized. Seven years ago, my mother wrote a living will stating that she does not want to be kept alive with technology, and she appointed me with durable power of attorney. When she developed dementia and moved to a nursing home, I became her surrogate decision maker and signed a do-notresuscitate directive for her. Even with these careful preparations, her health professionals and I have felt conflicted about how best to carry out her intentions. "Your mother's severe abdominal pain indicates a ruptured appendix," the surgeon said. "She may have cancer, too, but we won't know without surgery." He, eight other physicians, a staff nurse, and I stood in a circle around my mother's hospital bed. "My mother doesn't realize she is in a hospital, although she knows her abdomen hurts," I replied. '~Already, she has pulled out her IV twice because she doesn't remember what it is. She wouldn't understand surgery, so I don't see how we can go ahead with it." "Without surgery," said the surgeon, "she will die a very painful death. I consider surgery to be comfort care." "Treating her is a slippery slope," I said. "The question isn't whether to intervene, but to what extent. I agreed for her to be hospitalized, which I didn't think I ever would do. Staff examined her, drew blood, and started an IV. They took x-rays, gave her contrast solution to drink, inserted a rectal tube, and did a CT scan. Each procedure frightened her, and so I stayed with her to reassure her. Now you recommend surgery. She could end up with a colostomy or other complications. Where does it stop?" "We won't do a colostomy without checking with you," the surgeon said. "We'll only do surgery."
MIRIAM E. CAMERON,PHD, MS, MA, RN CenterAssociate Centerfor Bioethics Universi{yofMinnesnta 220 DakotaAve South Minneapolis, MN55416-1016 Copyright © 1998 byW.B. Saunders Company 8755-7223/98/1401-0004503.00
6
"None of us wants her to die in pain from a ruptured appendix or abdominal obstruction," I said as I signed the consent form. When they had left, I sat by my mother's bedside crying quietly so I would not upset her. She did not realize what had happened, but she patted me on the arm and said, "It will be all right." The surgeons removed her appendix, which was healthy, and a baseball-sized malignant tumor from her colon. After surgery, she was frightened and could not be comforted. "How did I get into this?" she kept moaning. Over and over, those of us caring for her explained, "You had surgery, and you'll feel better soon." "We hope we got all the cancer," the surgeon told me the next day, "but there might still be more. If it metastasizes, it could go to her lungs or liver." "Then she could develop breathing problems or jaundice," I said, "and we'll have to make more decisions." Looking for guidance, I had a literature search done. Only one article offered help. In determining how aggressively to treat persons with dementia, Loewy (1987) suggested taking into account the following: (1) the immediacy of the threat, (2) the relievable suffering caused by the disease, (3) the suffering produced by the treatment, and (4) the person's capacity for sustained understanding of and cooperation with the regimen. These guidelines point to a middle road rather than an absolutist stand requiring that all forms of life-sustaining treatment be given or that none be given. They provide a way to determine which interventions to use and which ones to limit. My mother is in the hospital again. Her health professionals and I are using Loewy's (1987) guidelines to make treatment choices so she goes back to her nursing home soon. Because she is at peace, I am not worried about her dying, but rather about her suffering. I hope we provide a peaceful environment so she can complete her life, let go when she is ready, and die surrounded by loved ones. People like my mother are capable of some social interaction and self-awareness. They can love and be loved, feel pain and pleasure. We who are their decision makers, both family and health professionals, must accept our inescapable obligation to make the often agonizing choices that tailor treatment to the person. Advance directives provide some guidance, but not enough. As the population ages and more people develop dementia, research and analysis are needed so we make wise decisions for them. Reference
Loewy, E. H. (1987). Treatment decisions in the mentally impaired: Limiting but not abandoning treatment. New England Journal ofMedicine, 31Z 1465-1469.
JournalofProfessionalNursing, Vol 14, No 1 (January-February), 1998: p 6