Dementia and the Right to Die

Q. During her last two years of agony, my mother would look at me and her doctors and nurses often and say, “Can’t you just give me a little black pill?” It was obvious to all of us what she meant and, of course, all we could say was that we couldn’t do that, but we would do everything possible to aid her comfort and reduce her pain.

Mom had some mild memory loss at the time, but certainly not severe dementia. I had Power of Attorney over her health, though I consulted my whole family on all important issues. In her Advance Directive, mom had requested her doctor and agent enter a Do Not Resuscitate clause and, as a family, we of course supported her choice. Mom spent her final days in the hospital, and sadly, she died a few months ago, in pain.

In thinking about her situation, what if I had a legal option that would have enabled me to honor mom’s request to free her from her pain much sooner? It was obvious that she was slowly dying anyway. Would I have helped her by telling the doctor to put her out of her misery? I believe I would have truly honored her wishes, but the option was not there yet, and her memory loss would likely complicate things even further.

I have read about people who find out they have Alzheimer’s and don’t want to lose their memory or burden their family. And, I’ve experienced with my mother seeing someone in pain begging to end it all. What are the legalities of assisted suicide for people who have Alzheimer’s or another form of dementia? And, what can we do to make sure our wishes are known and followed by our loved ones?

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A. I am so sorry to hear about your mother’s prolonged suffering. I had a client just earlier this week in her mid-50s with early-onset Alzheimer’s asking about this exact same issue. Physician-assisted Suicide, also known as Death with Dignity (sometimes also called euthanasia or mercy killing), is not legal in Virginia or Maryland at this time, but it is legal in Washington, DC and 6 other states. Unfortunately, the way these laws are written, they don’t apply to dementia patients because these patients won’t have the capacity to make the required decisions/requests and take the required actions once the time comes for these decisions and actions.

As Alzheimer’s disease and other forms of dementia continue to become more prevalent, however, it may not be long before there is a push for legalizing physician-assisted death in more states and in dementia cases. However, American officials must thoroughly consider the moral and social consequences of such action.

The issue of physician-assisted death (PAD) gaining national attention goes back a couple of decades. According to Rebecca Dresser, professor at Washington University Law School, “(I)n the early 1990s, the first person to secure Jack Kevorkian’s life-ending services was Janet Akins, a woman diagnosed with Alzheimer’s disease.”

According to Dresser, “(S)upporters of legalizing PAD for dementia offer several reasons for their position. They contend that respect for individual autonomy and self-determination requires authorities to give people the freedom to choose an earlier death over the suffering and indignities of life with dementia. For them, the loss of intellectual abilities as well as the loss of valued relationships and activities that accompanies dementia can be a fate worse than death. Many also want to protect their loved ones from the psychological and financial burdens of caring for someone with dementia.”
Dresser also brings up how PAD in the context of dementia raises several issues:

• Individuals choosing PAD are making one of the most significant medical decisions a person can make. All medical decisions should be competent and informed, but this is especially true of the decision to opt for PAD.
• There is a need for rigorous capacity assessment, as well as meaningful education, for dementia patients requesting PAD.
• Serious consideration should be given about whether something like an “Advance Euthanasia Directive” should be allowed as part of an Advance Medical Directive.
• The directive’s potential negative impact on clinicians and families should also be acknowledged.

So, as you can see, although there are several reasons in favor of PAD in general, and for dementia patients in particular, there are also some major ethical issues involved with PAD.

The Current Laws Regarding PAD

Currently, PAD is strictly prohibited in Virginia, as it is in most other states. As of February 20, 2017, California, Colorado, District of Columbia, Oregon, Vermont, and Washington have Death with Dignity statutes allowing physician-assisted suicide for terminally ill or otherwise suffering individuals who wish to end their lives, although the DC law could be overturned by the federal government. There is currently no legislative activity around Death with Dignity in Virginia. Individuals are working to raise the profile of aid in dying in Virginia through news stories, petitions, and other individual advocacy, but no group is on the ground organizing for physician-assisted dying.

In Maryland, a Death with Dignity law was considered in 2017, but was not passed, supposedly due to lack of public support.

In DC, as already mentioned, PAD is legal, but patients must be older than 18 with less than six months to live to be eligible. Similar to the Death with Dignity Act in the six other jurisdictions that I have enacted it, DC residents wishing to use this statute must make two requests at least 15 days apart for life-ending medications and ingest the drugs themselves. Two witnesses must attest that the patient is making the decision voluntarily. These criteria clearly exclude dementia patients, because by the time a physician is able to say that the dementia patient has only six months to live, the dementia patient will not be mentally competent to make these requests or to take the action of ingesting the medication on his or her own volition.

Other Options for People with Dementia

As you can see, people with Alzheimer’s disease or other forms of dementia are currently ineligible to request medication under Death with Dignity laws in any state, because their judgment and decision-making abilities are impaired by the illness. In addition, if a person in the early stages of these illnesses is without cognitive impairment and does not have another disease that is causing a terminal illness, he or she also does not qualify in the states where it is legal due to not having a terminal diagnosis.

So, while Alzheimer’s and other dementias are daunting diseases to face, advance planning will help provide some control. An Advance Directive, for instance, aims to help people make their intentions known to prepare for a time (such as if they have Alzheimer’s or another form of dementia) when they are no longer able to communicate. An Advance Directive (including a Long-term Care Directive, a vital part of the advance directive that I created for my clients) specifies what medical and long-term care related actions should (or should not) be undertaken if a person is too ill or incapacitated to make decisions. However, additional information can be included to cover decisions involving day-to-day choices such as where he or she would like to be treated, who the preferred caregiver is, and who’s authorized to be his or her healthcare agent. The directive can also rank health care institutions in order of preference, and it can even discuss wishes pertaining to pet care.

A personal statement can be included, as well, describing your history, values (including religious beliefs), and any other information that will help people understand or at least have a sense of who the directive’s author is. This allows caregivers to make informed decisions based on more complete information and allows them to fill in the gaps in unanticipated situations. This document reinforces that the person making it doesn’t want their wishes to be ignored, and doesn’t want someone else’s judgment substituted for their own.

Now is the Time to Get Your Advance Directive and Other Documents in Place

No one can precisely predict the exact life changes that’ll occur during the course of a mental decline. And no one can predict the type of health care setting he or she will need or how quickly the disease will progress. That’s why planning in advance is so important. Once you have taken the step of speaking with your loved ones about your wishes, it is important to develop incapacity planning documents, including an Advance Medical Directive and a Lifestyle Care Plan, to make your wishes known. 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:

Fairfax Alzheimer’s Planning Attorney: 703-691-1888
Fredericksburg Alzheimer’s Planning Attorney: 540-479-143
Rockville Alzheimer’s Planning Attorney: 301-519-8041
DC Alzheimer’s Planning Attorney: 202-587-2797