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Way~finding & Assisted Self Determined Death

I have a question that I hope sparks more thought and a broader discussion. Because I am honestly curious to see where our range of thinking on the topic of VSED (voluntarily stopping eating and drinking) and MAiD (medical aid in dying) is landing these days. And I hope for a (respectful) diversity of views. So here goes:

Should a person without a terminal diagnosis have access to assisted self determined death? If so, what are the most ethical gatekeeping criteria?

A little context may help, I am an End-of-life Navigator and grief way~finder. Questions like this one come up for me in the day to day of my work. I am having more frequent conversations with client-families who are exploring these boundaries. And my answer usually starts, 'well, it depends'. If they live in a place where MAiD is legal but unavailable to them, that is one kind of conversation. If they are considering VSED (instead of relocation/death tourism or because their condition is not considered terminal) then there is a different conversation. I am impeccably careful not to give anyone 'permission' to end their life.

I was prompted recently to conduct a quick review of current articles from Canada that address the issue of expanding MAiD laws to include diagnosis of intractable mental illness. For some people (myself included) this raises some red flags. There are valid arguments and coordinated activism against MAiD from the disability rights community. One researcher at the University of Toronto, Dr. K. Sonu Gaind, makes a bigger commitment by stating, “In my opinion, wide MAiD expansion represents a colonial legacy of policies that favour the autonomy of the privileged at the expense of the marginalized.” My reading of this includes the possibility that able bodied and neuro-normative people create euthanasia options for other people whose lives they don't value and whose care may be costly.

Appropriately, a thoughtful consideration of chosen endings leads one down some dark roads. As a funeral celebrant and grief companion I wade through the gnarly aftermath of suicide too often. And VSED approached ethically and with care is not suicide, in my opinion. So far, in my own practice, these research excursions on the dark roads have made three things clear: 1) no action should be taken in haste, 2) agency matters, and 3) depression impacts decision making.

Dear death care practitioners and family caregivers, I want to know... What wisdom do you bring back from walking in these shadows?

Currently in the US MAiD access is available in eleven states: Oregon, Washington, Montana, Vermont, California, Colorado, Washington D.C., Hawaii, New Jersey, Maine, and New Mexico. Only with a terminal diagnosis. Even then one must demonstrate competence and decision making capacity that meets established legal and medical standards. Given how long folks put off making these choices, the legal requirement for physical capacity to self-administer the meds, and because many medical conditions impair cognitive function, there is a small window for access to a planned death. Is threading the needle of one's agency through these narrow requirements more about timing than anything else? People with a terminal diagnosis have more choices for a supported self determined death, but still they may postpone until they are beyond the ability to self-administer the medications (as legally dictated) and so are thwarted even though all their ducks were lined up.

If a person struggling with chronic mental illness in their most lucid/clear moment asks to be assisted in dying and can consistently say this every time they are lucid and clear (and none of the meds or treatments they have access to are working), how do we honor their agency AND their tether to life? If an elder says they feel satisfied with their life and are ready to go then should they be allowed an exit ramp that doesn't necessitate self harm? I know, good fodder for an ethics committee to ponder but this conversation needs to happen at dinner tables too. I'm not sure there is a right answer and I can't offer a good answer beyond 'it depends'.

For people suffering interminably without a terminal diagnosis, whether their chronic condition is of body, heart, or mind, I've concluded that we must offer appropriate and adequate care before we offer an exit. The problem is that providing appropriate and adequate care may also literally bankrupt a family, leaving them to cope with financial ruin while inevitably grieving. I have a growing feeling that MAiD without universal health insurance is unethical. But this does not mean I should be in someone's way, just that I have to ask pointy questions and be incredibly diligent in pointing these questions at myself as well.

Meanwhile, here we are. As the Baby Boomer's death tsunami rolls ashore Millennials are dipping their toes into the reality of witnessing planetary mass extinction. Then the whole tide of that is compounded by the ebb and flow of ongoing covid, all serving to spotlight the positive death industry in the Zeitgeist mix o' the moment. To be honest, I'm just not comfortable bright-washing death with positivity. I like to think of my work, instead, as death wellness advocacy. Because we need healthier perspectives with so many endings coming our way and we can't always whistle while we work.

I think about all this stuff a lot and I wonder what other people are thinking. For today's remedy I wandered over to a small town's Common where the annual Old Home Days gathering was in full swing. Friends well met. The offer of a Shiatsu tuneup. Home made soap for sale and maple syrup, good neighbors and helping hands, kids in a sack race, fresh kimchi, smoked turkey legs and cornbread, folk songs to sing along with. Babies, dogs, and by silent agreement NO politics at all. Just a day to be ourselves. For me a chance to immerse myself for awhile amidst a bunch of happy celebrating people.

And inevitably, because people come home for Old Home Days, three generations of a family I helped last year with a Celebration of Life stopped by my perch for hugs. An elder asked if I am still making burial shrouds and took my phone number. An old friend chatted about considering doula training. So, um, yeah. Deathwalking.

If you have thoughts about my questions please drop them in the comments. Here's a reminder of where this ramble started: Should a person without a terminal diagnosis have access to assisted self determined death? If so, what are the most ethical gatekeeping criteria?

Guidelines and rules of engagement for comments:

Be kind. Be curious. Don't be an ass.

Thank you for your time and consideration. ~ Dina

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