Recently, I spoke with a seasoned health care reporter who was interested in Alzheimer’s and biomarkers because of his own family’s history of this disease. He started by asking, “Why would anyone not want to take this test?” – to “know,” so they could “plan” – and then soon acknowledged that he was not at all sure whether he himself would want to live with this knowledge, for years or decades, before the onset of symptoms.
This reporter, like other reporters who work in or follow policy in states that have provisions for what is called physician-assisted suicide, or physician-assisted death, or physician aid-in-dying (there is no perfect or value-neutral term, and policy and people in states where this practice is legal may use more than one term to describe it), was aware that an Oregon-style provision requires the act of self-administering a lethal dose of medication to be a “voluntary” act. Therefore, a person nearing death due to Alzheimer’s would not have equal access to this end-of-life provision because this person would have already lost the capacity to make a voluntary decision, and also to self-administer. While discussions about “loss of capacity near the end of life” tend to focus on the last hours, days, or perhaps weeks of life, when a person is dying of cancer or heart disease, loss of decision-making capacity and other cognitive functions in a person with Alzheimer’s may occur years before the person’s death.
Talking about end-of-life decision-making solely in terms of the right to refuse life-sustaining treatment can also fail to grasp the situation of the person with Alzheimer’s, or that person’s surrogate decision-maker, because there may be nothing to “stop” – unless the person has a life-threatening comorbid condition.
The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.