Dementia and Choice in Dying

Final Exit Network provides education and support for those who want choice in dying, who prioritize quality over quantity of life, and who want to minimize the amount of time they spend in a demented state. The clients we serve often passionately describe their reasons for choosing to hasten their deaths rather than descend into dementia. Each person’s reasoning is different, but there are common themes that cut to the core of what they most value in their human experience.

Our clients tell us they want to avoid a loss of independence or personal agency, and what they see as degradation of their selfhood. They do not want their loved ones witnessing that loss of selfhood. They want to shape the narrative of their lives, so their final chapters reflect their values. And they want to prioritize their vision for the future in the use of their savings.

If you are faced with a dementia diagnosis, do NOT bury your head in the sand. You have options, but it takes time and effort to prepare, and you must have decision-making capacity to sign documents or actively end your own life. Remember, preparing does not kill you; preparing simply preserves the availability of your options.

First, talk to your loved ones and your healthcare representative, and supplement your advance directive with an advance directive for dementia. Even if you plan to hasten your death before losing decisional capacity, a dementia directive is a quick, easy backstop to have in place should you lose capacity prior to implementing your plans. Hastening one’s own death in this culture can be like swimming upstream in a flood, and the odds of successfully implementing your plans are vastly improved if you have support.

Advance Directive for Dementia

To learn about dementia advance directives, click HERE.

Hastening Death if Faced with Dementia

To read a handout with an overview of options for hastening death, click HERE.

The following are options for ending your life before you lose decision-making capacity due to dementia:

Final Exit Network’s Exit Guide Program serves individuals with a dementia diagnosis who wish to end their lives, as long as they retain decision-making capacity, which individuals in early-stage dementia typically do.

To learn more about the Exit Guide Program, click HERE.

Voluntarily stopping eating and drinking (VSED) is a method of ending one’s own life that is as old as the hills, but with modern palliative care, it can be a comfortable and satisfying path.

VSED Northwest’s website has a lot of good information, click HERE.

It’s My Right: The Handmade Death of Herta Stürmann is a 25-minute documentary following one woman’s VSED journey (though not for dementia), click HERE.

For a handout on preparing for VSED, click HERE.

There are some dementia patients who have used voluntarily stopping eating and drinking (VSED) as a bridge to qualify for medical aid in dying (MAID). While this is a relatively new strategy and very few people have used it, it may be a possibility for someone who is determined.

For an academic article in the Journal of the American Geriatrics Society on this option (behind a paywall), click HERE.

For an open-access letter to the editor by the same authors, click HERE.

For a Hemlock Society presentation on the option, click HERE.

Swiss law protects its citizens’ right to their own lives far more than American law does. Fortunately, Swiss law allows non-citizens to come to Switzerland for what they call voluntary assisted dying (VAD), which is typically, though not exclusively, medical aid in dying. It is an expensive option and involves international travel, but many Americans—including Amy Bloom’s husband, whose journey she describes in her memoir, In Love—have ended their lives this way.

For more information on Swiss VAD organizations, click HERE.

For do-it-yourself types, there are books which describe methods of self-deliverance and provide guidance on how to achieve them. Two of those books are:

Final Exit 2020 (the electronic, PDF version, not the hard copy), click HERE.

The Peaceful Pill Handbook, click HERE.