Q. My wife and I recently sat down to discuss the topic of end-of-life planning. She surprised me when she told me that if she ever gets diagnosed with Alzheimer’s or another type of dementia, she’d want to die on her own terms, before she becomes a burden to loved ones. I know from some of your prior articles that right-to-die laws exist in certain U.S. states. However, my understanding is that nobody with dementia would qualify for physician-assisted death in any of those states because the person wanting to end their own life must have decision-making ability at that time and be able to self-administer the lethal dose of medication, both of which things don’t exist in people with late-stage dementia. Is that true? If so, are there any options for someone with Alzheimer’s or another type of dementia?
A. Many believe that people should be able to decide if they want to continue to live with Alzheimer’s or another type of dementia, a debilitating disease that has no cure.
In the United States, in states where right to die (also called Physician-Assisted Death, Death with Dignity, and Medical Aid in Dying) is legal, you:
- need to be a terminally ill adult with six months or less to live;
- have decision-making capacity; and
- have to be able to self-administer a lethal dose of medication prescribed by a physician.
These are criteria that patients with Alzheimer’s and other types of dementia simply can’t meet. By the time a physician declares that a patient whose main illness is dementia is not likely to live for six months, that patient is already in the late stages of dementia and therefore lacks both decision-making capacity and the capacity to self-administer medication, thus making the U.S. Medical Aid-in-Dying process impossible for those with dementia. This is why some people in the United States are starting to move to Europe, where medical aid-in-dying laws for people with dementia are more favorable.
Alzheimer’s Patients Going to Europe for Medical Aid-in-Dying
The Netherlands was the first country in the world to legalize Medical Aid-in-Dying, just a short 20 years ago. In 2020, the Netherlands extended that right to people with advanced stages of dementia. Switzerland allows assisted suicide with patients administering a lethal dose of medication themselves, but it must be under the supervision of a physician who has first to review the patient’s capacity for discernment. Below is an example of Medical Aid-in-Dying in Switzerland. Read more about Medical Aid-in-Dying in other European countries here.
The life of Amy Bloom, author of In Love, a Memoir of Love and Loss, was forever changed the day her husband, Brian, was diagnosed with Alzheimer’s disease. Brian Ameche, then in his mid-60s, told his wife that he wanted to end life on his own terms, before the disease robbed him of everything.
Together, led by Brian, Brian and Amy made the decision to travel to Switzerland to access an assisted dying process unavailable in the United States for those with cognitive diseases. Amy was reluctant, but Brian was insistent — and he needed his wife’s help. Amy’s book is centered around her husband’s diagnosis and her quest to help him end his life in the manner he chose. The book also chronicles their life together and how it was changed by Alzheimer’s.
The Application Process for Medical Aid-in-Dying in Zurich
In her book, Amy discusses the application process for Medical Aid-in-Dying in Switzerland, which she described as “not easy.” First, you become a member of the organization, Dignitas, where they require an autobiography of the person making the application. They also require medical records and medical support, if you are engaged in the medical process, which most people with dementia are. According to Amy, “(y)ou have to demonstrate to them that you are “of sound mind.” They then perform some telephone interviews and then there is a provisional go-ahead or a no-go. If you get the provisional go-ahead, when you go to Zurich, you have two more interviews with physicians to continue to check in with the person making the application.”
According to the Dignitas Website, the organization has the objective of ensuring “a life and a death with dignity” for its members and of allowing other people to benefit from these values. Their activities include:
- counseling in regard to end-of-life issues;
- cooperation with physicians, clinics and other associations
- carrying out patient’s instructions and patient’s rights with regard to doctors and clinics;
- suicide prevention;
- accompaniment of dying patients and assistance with a self-determined end of life, among other things.
Dignitas described how they are contacted by people from all over the world who seek counseling on questions regarding life and death, which are answered by the 20 people employed by the organization.
Amy and Brian’s Experience with Medical Aid-in-Dying in Switzerland
Amy and Brian wound up going to Zurich, where after a careful screening process, Brian succeeded in terminating his life in late January 2020.
For Amy, the whole trip was a long, tearful goodbye, but for her husband, he had made up his mind. She said, “(h)e knew what he was going to do. He was focused on what he needed to do and his own process about that, his own process of departure. We held hands a lot, and we took a lot of naps and we walked around the city together. We didn’t talk much about what was coming and we didn’t talk a lot about our life together and how it had brought us to this and what would be next. He did say, ‘I hate to leave so soon’ and that he was not afraid.”
Doctors repeatedly told Brian that he could change his mind at any time. Brian understood, however, that “there was a window of cognitive functioning and that he had to make this decision and act on it within that window. And that was very clear to him.” Amy described it as “a very, very peaceful process.” She knew that this was what her husband wanted, and he was at peace with it. He seemed relieved, and she was glad that she was there for him.
How to Plan for Medical Aid in Dying
People with Alzheimer’s disease and other types of dementia can and always should sign advance medical directives. If they have already signed an advance medical directive, they should consider updating theirs in light of the dementia diagnosis. In an advance medical directive, someone can state that if they have dementia, they would not want a feeding tube, a ventilator, or dialysis. You can also legally opt for withdrawal of treatment and refusal to start certain treatments in the United States. However, as mentioned, you have to be terminally ill and meet all of the other conditions described above to qualify for medical aid-in-dying in the United States.
Every adult should have an advance medical directive and a general power of attorney, the two primary documents that comprise incapacity planning, because incapacity can happen to any adult at any age. Those with Alzheimer’s and other forms of dementia wishing to hasten their deaths should also include in their Advance Medical Directive a request to voluntarily stop eating and drinking (VSED) — essentially a request saying that you would not want to be spoon-fed if you’re not competent to make decisions — a request which, if followed, typically ends a person’s life within two to three weeks. Although this is something we have offered to all of our clients since 2017 as part of our Advance Medical Directive, the laws are still unclear in most states on whether these types of requests can be followed legally by hospitals and nursing homes. There are also many who think that no one should have to be faced with this choice. The husband of well-known NPR radio host Dianne Rehm stopped eating and drinking in order to end his life after being diagnosed with Lewy body dementia. Because of this event, Diane Rehm became a spokesperson for the importance of right-to-die legislation in partnership with end-of-life organizations such as Compassion & Choices. Rehm wrote an op-ed for Being Patient about extending the right to die to people with severe Alzheimer’s or other forms of dementia. She believed that no one should have to die the way her husband did.
Please read my article Should People with Dementia Be Able to Die with Dignity? for more details on Medical Aid-in-Dying and planning for Alzheimer’s or other forms of dementia. Please also read my other articles on Medical Aid-in-Dying for additional information on the topic.
Plan Ahead to Tell Loved Ones What You Would Want
Whether or not you agree with Medical Aid-in-Dying, it is extremely important to plan ahead to make sure your end-of-life wishes are known to physicians and to your loved ones.
If you or a loved one has not done Incapacity Planning, Estate Planning, or Long-Term Care Planning (or had your planning documents reviewed in the past several years), now is a good time to plan and get prepared. Call us at any time to make an appointment for an initial consultation:
Elder Law Attorney Fairfax: 703-691-1888
Elder Law Attorney Fredericksburg: 540-479-1435
Elder Law Attorney Rockville: 301-519-8041
Elder Law Attorney DC: 202-587-2797
About Evan H Farr, CELA, CAP
