MGordon_MD
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Aug 19, 2010, 7:32 AM
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By Dr. Michael Gordon
“I have a problem,” said the physician on the phone. “I have a long-standing patient suffering from progressive dementia. Years ago she told me of a living will that indicated she did not want tube feedings or ‘heroic’ measures at the latter stages of her life.
“I read the document. I felt it indicated what she told me. She can no longer eat safely, and her son wants us to insert a feeding tube and is prepared to take legal action to make this happen despite what was written in her living will.”
I mentioned to the physician that we had a number of similar situations in the past few years, and at times were forced to take the legal route and present along with the families to the government’s Consent and Capacity Board. It often becomes uncomfortable for all concerned, especially for the staff who feel it is their duty to fulfill patients’ wishes when they are challenged by the family members.
“We have to meet to explore the son’s reasons to challenge his mother’s apparent wishes that were written while she was able to do so and see what can be done to avoid the legal route,” my colleague said. “We will try to represent the mother’s wishes to fulfill our duty and obligation to her as health-care providers.”
I was not surprised, as the ethics and legal literature are replete with cases in which apparently well-meaning children cannot bring themselves to withhold artificial nutrition and hydration (ANH) through a feeding tube because to them, it seems that they are “starving” their loved one to death. Despite explanations by health-care professionals and ethicists to the contrary, the thought of not providing what they interpret as “food and drink” contradicts their instincts to protect their parent, whether or not there are strong religious beliefs held by the acting substitute decision maker (SDM) especially when it’s a child.
The concept of an advance directive, commonly called a living will by the lay public, came into existence in the 1980s when the ethical concept of autonomy developed into a dominant theme in North American decision-making. This new ethical force contrasted to what held sway during the preceding decades when beneficence (“doing good”) was the predominant theme in health-care decision-making.
Autonomy was accompanied by the complex concept of capacity to make decisions. This has become increasingly complicated by the increasing prevalence of cognitive impairment due to Alzheimer’s and other dementias associated with North America’s increasingly aging population. With this new equation for decision-making in the context of incapacity to agree to or reject life-maintaining treatments such as ANH, the idea of the living will came into being. The idea was that you could indicate to loved ones what you would want when you could not participate in personal health-care decisions.
Unfortunately, the process frequently fails. To really succeed, you should explain in detail to your SDM what you mean by what you are writing in your living will. To be extra sure, you should discuss with your physician what terms you should use to achieve your goals and to avoid misinterpretation.
If there is doubt that your SDM will adhere to your instructions, you may be better off appointing someone who is not a family member and discuss the matter with a lawyer to ensure that that your intentions will be implemented when the need comes. You want to avoid strong, understandable, but misdirected contradictory emotions that lead your loved ones to undermine your expressed wishes.
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Dr. Michael Gordon is Medical Program Director, Palliative Care Baycrest Geriatric Health Care System in Toronto, Canada and Professor of Medicine, at the University of Toronto.
Dr. Gordon is the author of the engaging memoir Brooklyn Beginnings: A Geriatrician's Odyssey, published by I-Universe.
Brooklyn Beginnings is available in bookstores and online at: Indigo-Chapters, Amazon.ca, Amazon.com, Barnes and Noble and I-Universe
Moments That Matter: Cases in Ethical Eldercare: A Guide for Family Members, is available online at Amazon.ca.
His latest release is Late-Stage Dementia: providing comfort, compassion and care. It is available at Amazon and Indigo.
Visit Dr. Michael Gordon's website.
(This post was edited by MGordon_MD on Aug 19, 2010, 7:33 AM)
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