Should People with Dementia Be Able to Die with Dignity?

Q. During a conversation the other night, my father said that if he was ever diagnosed with dementia that he wouldn’t want to live that way or burden the family. I know that Death with Dignity is legal in a growing number of states, but can people with dementia choose physician-assisted death in those states? I’ve read that there are all kinds of obstacles people have to overcome when they are near death to get this done and that people with dementia can’t complete those steps. Can you elaborate?

A. According to a study published by the Journal of the American Medical Association (JAMA), many people regard being confused all the time (45%) as a fate worse than death. Many believe that people should be able to decide if they want to continue to live with dementia, a debilitating disease that has no cure.

Medical Aid in Dying in the United States

We have written many times before about physician-assisted death (PAD), also called death with dignity, and more recently called Medical Aid in Dying (MAiD). It is currently legal in 11 jurisdictions: California, Colorado, District of Columbia, Hawaii, Montana, Maine, New Jersey, New Mexico, Oregon, Vermont, and Washington. These laws (excluding Montana, since there is no statue but rather a state Supreme Court decision on the issue) expressly state that “actions taken in accordance with [the Act] shall not, for any purpose, constitute suicide, assisted suicide, mercy killing or homicide.”

To take advantage of death with dignity laws in the United States, you need to be a terminally ill adult with six months or less to live, have decision-making capacity, and the ability to self-administer a lethal dose of medication prescribed by a physician — criteria that patients with Alzheimer’s and other types of dementia simply don’t meet. According to David Orentlicher, MD, JD, director of the William S. Boyd School of Law at UNLV, “Alzheimer’s and dementia are not terminal illnesses. Plus, as the disease progresses, patients lose their decision-making capacity to understand their choice and executive functioning skills to self-administer medication.”

“Dr. Kevorkian’s first patient was a woman with early Alzheimer’s,” Orentlicher recalled, noting she was still mentally competent. “You can only make a decision like that while you have capacity.”

You have to be terminally ill and meet all of the other conditions mentioned above to qualify for medical aid in dying but not for withdrawal of treatment or refusal to start certain treatments. People with Alzheimer’s disease and other types of dementia can and do sign advance medical directives stating that if they have dementia, they would not want a feeding tube, a ventilator, or dialysis.

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. When a person first gets diagnosed with any type of dementia, that person is almost always still capable of making decisions and should meet with an experienced elder law attorney as soon as possible to update their Advance Medical Directives, add a Dementia Directive if they don’t already have one, and discuss what other planning should be done, such as Medicaid asset protection planning. For someone diagnosed with dementia, it is of utmost importance that they clearly explain the care they do and don’t want once they’re unable to make decisions for themselves. To help ensure the wishes of the person with dementia are followed, a copy of the Advance Medical Directive should of course be given to the agent responsible for enforcing decisions made in the directive.

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 in 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 woefully unclear on whether these types of requests can be followed legally by hospitals and nursing homes.

Medical Aid in Dying in Europe and Canada

The Medical Aid in Dying landscape looks very different in Europe and Canada when it comes to people diagnosed with dementia. The Netherlands and Belgium currently permit people diagnosed with dementia to sign an advance directive to enable themselves to receive Medical Aid in Dying when they become incapacitated, and use this document, when the time comes, to assist the patient with carrying out their wishes. Now Canada — which last year greatly loosened the criteria for Medical Aid in Dying in 2021 — may be on the verge of taking the same path and loosening it even further to allow those with dementia to document their MAiD wishes in their advance directives and for those wishes to be carried out without final consent if they become mentally incapacitated.

Medical Aid in Dying (MAiD) in Canada

When MAiD was first legalized in 2016 in Canada, the legislation restricted the procedure only to individuals whose natural death was “reasonably foreseeable.” The widespread assumption — among doctors, lawyers, patients, and even MAID providers at the time — was that it excluded those with a dementia diagnosis. In March 2021, the “foreseeable death” requirement was removed with Bill C7.

Currently, in Canada, in order to qualify to receive MAiD, you must meet several specific criteria.

• You must be an adult (defined as being 18 years of age or older).
• You must be eligible to receive government-funded health care services, so residents, landed immigrants, refugees, and Canadian citizens all qualify. At this time, non-Canadians are not able to access MAiD in Canada, even if paying privately.
• You must be suffering from a GRIEVOUS and IRREMEDIABLE condition. This is further defined as a serious illness, disease, or disability that puts you in an advanced state of decline that cannot be reversed, and that causes intolerable suffering that cannot be relieved by any means acceptable to you.
• Your request for MAiD must be made VOLUNTARILY, free from pressure from anyone else.
• You must be CAPABLE of making your own health care decisions — this means your request for MAiD can only happen after you have a clear understanding of your medical condition and have been informed of other treatment options. You must be capable of making this decision both at the time of the request and be able to give consent at the time of the procedure itself, except in certain, limited circumstances.

Currently, individuals with dementia and other types of Alzheimer’s can access MAiD, but they must be able to give consent right up until the moment they’re going to receive a doctor-assisted death.

A parliamentary review was supposed to be ongoing by the Canadian government but, since the election in September 2021, the review has been at a standstill. Once it commences, the parliamentary review of the law will look at questions surrounding mature minors, mental illness, and advance requests such as those made by dementia patients in advance directives before they became incapacitated.

One Activist with Dementia Is Fighting to Change Things in Canada

Ron Posno, an 82-year-old retired professor and pilot, was diagnosed with dementia in August of 2016. Posno is one of the advocates pushing for the Canadian government to allow people such as him to make an advance request for Medical Assistance in Dying. Years down the road, when he loses the capacity to consent, he knows that a loved one and a MAiD provider will have his pre-written directives — he just hopes that they can be carried out.

“I’m ready to die when my life has transitioned from living to just existing,” said Posno. He has created a list that includes eight directives for his wife and doctor. When he’s exhibiting one or more of these symptoms, Posno wants them to conduct a medically-assisted death. For example:

“When I become persistently abusive either verbally or physically … When I require physical restraints and/or a locked door facility … When I get to that point where I have to be fed … that’s when I want to have MAiD.”

Posno and other advocates believe that until they recognize this idea of advance consent, they’re going to leave thousands of people every year in this situation with no ability to do anything about it. Advocates feel that these people want to make that choice for themselves in advance and that too many people have been either relegated to a life that they’re no longer conscious of and are behaving in ways that they did not want their families to have to deal with in any way. If someone with dementia meets the criteria for MAID — mental capacity for informed consent, intolerable suffering, and a foreseeable death — they should be eligible, advocates believe.

The Other Side of Things

Some of Canada’s original MAiD providers aren’t sure how they feel about allowing advance requests. Dr. Ellen Wiebe, who is on the Clinicians Advisory Council for the group Dying with Dignity and is licensed in British Columbia to perform physician-assisted death said she doesn’t know if she could perform an advance request for medically assisted death.

“I meet them for the first time and they don’t know what’s going on and I’m supposed to end their life because they wrote a piece of paper years ago? That’s really hard, I don’t think I could do that,” said Dr. Wiebe.

“If I have real difficulty, you can imagine that the vast majority of providers would have real difficulty because I’m comfortable with difficult cases,” explained Dr. Wiebe. “To me it’s still dealing with basic rights. But the person who wrote those advance directives years and years ago, isn’t the same person as the one who is now maybe happily playing with the puzzle on the table on the nursing home, not recognizing her family.”

There are, of course, similar concerns among the medical and disability communities in the United States, including advocates for those with mental health issues, intellectual disabilities, and developmental disabilities, who believe that these types of laws could be used to target these communities of persons with disabilities.

Earlier this month in Canada, a bill, S-248, has been filed in the Senate that would permit patients to elect MAiD without final consent if they become mentally incapacitated.

Plan Ahead to Tell Loved Ones What You Would Want

Whether or not you agree with Medical Aid in Dying or would want to do it yourself, should it become legal in Virginia or Maryland (please note it is already legal in DC), and should you be in a situation that warranted it, it is of utmost importance to plan ahead to make sure your end-of-life wishes are known to physicians and to your loved ones.

An Advance Medical Directive (including our proprietary Long-term Care Directive®, a vital part of our proprietary 4 Needs Advance Medical Directive®) specifies what medical and long-term care-related actions should (or should not) be undertaken if you’re too ill or incapacitated to make decisions. Please read more about this important document in my articles, “Would You Choose Death on Your Own Terms if You Had a Terminal Illness? In Ten States, it’s Legal” and “When Medical Aid in Dying is Legal, But Still Not Accessible.”

If you or a loved one has not done Incapacity Planning, Long-Term Care Planning, or Estate Planning (or had your Planning documents reviewed in the past several years), now is a good time to plan and get prepared. Call us 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