What Is The Right Decision?
End-of-life decisions—it’s a topic that’s controversial and often excruciatingly difficult to talk about. It evokes an array of emotions on all sides of the debate. When diagnosed with Alzheimer’s disease or other progressive types of dementia, who should decide when and how our life should end? Can we responsibly make those choices for our future selves? When we are not going to be able to predict our future state of mind? What if our final wishes change as the disease progresses? This end-of-life debate that is happening across Canada. It is a complex one, with compelling arguments on each side.
For ‘right-to-die’ advocates, the argument rests on the principle of personal choice. This is what informed a recent document issued by a New York based end-of-life agency that allows patients with dementia to have food and fluids withheld from them. But under specific conditions, so they can pass on when their condition reaches a severe stage. (Not yet approved in Canada.) The agency’s directors argue that the document gives dementia patients a voice in making their wishes known. Before they become incapable of doing the decision in the future.
A Story About Alzheimer
Katherine Hammond, the daughter of Margot Bentley, who passed away in 2016 in an Abbotsford, B.C. nursing home. Has been living many years with Alzheimer’s, shared that her mother’s wish was to avoid a prolonged process of dying. And that it was a personal choice that deserved to be honoured (See past Vancouver Sun article to learn more about this case).
Despite Bentley’s wishes that were stated in her legal documents. The nursing home staff continued feeding her while she was in a vegetative state, and B.C. courts ruled that food and fluids could not be withheld. Hammond and many others still insist that Alzheimer’s needs to be included by the federal government as a condition for which individuals can give advance directives for medical assistance in dying (M.A.I.D.).
Yet, there are also many who maintain that it is unethical to withhold basic sustenance from someone in an advanced stage of a terminal illness. Proponents of this view point to the fact that we cannot know for certain what our future feelings will be. When we are in that advanced and very vulnerable stage of a progressive dementia. This was the crux of the argument made by critics of the document developed by the New York end-of-life agency. Scholar Richard Doerflinger, states that “it’s what (patients) want here and now that matters. If they start taking food, you give them food.” According to Doerflinger, “The question is: Do we, the able-bodied, have a right to discriminate against the disabled people we will later become?”
What Is The Right Answer?
The questions are hard and the answers often unclear. Private discussions within families and care teams around end-of-life decisions are happening every day across the country. Many want to honour the individual and their wishes to the best of our ability while still addressing other ethical concerns.
These discussions, however painful and challenging, impact lives, raise important issues around morality and legality. They need to be grappled within all their complexity as part of our public discourse. We encourage you to participate in this discussion by sending us your own thoughts and opinions on this important issue. You can also learn more by staying connected with advocacy organizations like, Dying with Dignity Canada.
