(Editor’s note: This blog post was submitted by a Final Exit Network (FEN) exit guide. FEN’s Exit Guide Program educates people on ways they can shape their end-of-life path. Exit guides provide information so that self-deliverance is a peaceful and practical option people may consider and a compassionate presence for those who choose that option. For more information, see finalexitnetwork.org/services/exit-guide-service-plus-end-of-life-options/)
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A question we volunteers often hear is how to time a chosen death if someone is in the early stages of dementia. In fact, it’s one of the most heartbreaking issues we see in the Exit Guide Program.
We work with people in early dementia who are clear on their wishes:
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- They don’t want to suffer through a long decline into a loss of personhood.
- They don’t want to live in institutional care.
- They want their life to end on as positive a note as possible.
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And yet…
Dementia can rob people of the self-awareness they need to assess their own cognition. Cruelly, this happens long before dementia takes away their ability to carry on a conversation with a loved one.
We have seen folks in early-stage dementia who appeared to have full executive function but—as it turns out—were unable to be discreet about their end-of-life plans, or who wanted to hasten their death but couldn’t find the emotional oomph to set a date. While they were doing fairly well and living independently, and they were determined to hasten their death, the window of opportunity for a chosen death to escape late-stage dementia had closed for them. And they had no idea that it had closed.
For any pathway for a chosen death—voluntarily stopping eating and drinking, medical aid in dying in the US or assisted dying in Switzerland, or a nonmedical option such as using inert gas as we teach in the Exit Guide Program—you must have “decision-making capacity” at the time of your chosen death. That usually means:
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- You understand your diagnosis and the options available to you.
- You can communicate your reasoning for ending your life.
- You can demonstrate that you understand the consequences of your choice (that death is permanent).
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That’s actually a fairly low bar, and people in the early stages of dementia usually meet these criteria easily. But what isn’t evaluated is the more nebulous capacity to make a difficult and emotionally charged decision, and to keep that decision confidential. That’s not a capacity you test on a regular basis—thank goodness!—but that means it’s difficult to discern when that capacity is gone.
A related note, given the increased interest in assisted dying in Switzerland: Remember that travel can be particularly disorienting to someone with cognitive impairment or dementia. Someone with dementia who demonstrated decisional capacity at home may not be able to do so on arrival in Switzerland. This means that the window of opportunity for the Swiss option is shorter for people with cognitive impairment than for those without.
The thing is, there’s no bright line between “competent” and “not competent.” Instead, there are days when you’re sharp and days of mental fog, with the foggy days gradually outnumbering the sharp ones. You probably won’t get an unmistakable sign that tells you that it’s time to go, and if you wait for one, you’ll likely end up waiting too long. In our experience, sadly, people who successfully exit on their own terms, by whatever path, usually leave at least some good time on the table.
Exit guides advise clients with dementia on monitoring their executive function and their capacity to make challenging decisions. This is really hard, as cognitive changes are often gradual; you adapt, and your loved ones adapt, and it’s like that proverbial frog in a pot of water that’s getting warmer and warmer.
We have some strategies that may help you track symptoms that suggest cognitive decline:
Keep an incident notebook. Keep a pocket notebook with you to record any concerning incidents—forgetfulness, getting lost in a familiar place, losing your train of thought mid-conversation, emotional swings, and other “senior moments” (which we shouldn’t dismiss as insignificant in the context of dementia). Review your notebook on a regular basis—every few weeks is good—and notice whether the frequency of incidents has increased or whether new symptoms have appeared. And if the frequency starts going down, that may mean you’re forgetting to record incidents and is itself a sign of cognitive decline.
Enlist trusted people. Find a couple of people who will be lovingly honest with you and are committed to helping you evaluate your cognitive condition. Don’t leave it to them to raise concerns; make it your job to ask. Schedule a regular check-in—every Friday, or the first and 15th of the month—and ask for their impression and any concerns. You might also want to enlist someone you see only occasionally, as that person may catch changes that someone who sees you more regularly would miss.
Notice diverging impressions. Self-awareness can fade as dementia progresses. If your sense of your own cognitive functioning differs from what trusted loved ones report, your self-awareness may no longer be reliable.
People facing dementia who wish to hasten their deaths often ask us how to know when the “right” time is to exit—meaning the moment just before they lose the ability to make an emotionally difficult decision and the window of opportunity closes.
Unfortunately, there is no “right” time. There is only what feels too early and what turns out to be too late. One of the most important mental muscles we can develop is the willingness to exit while there are still good days ahead, because we don’t know when we’re going to wake up to the last good day we will have.
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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.
Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.
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