The Burden of Being: one doula's take on 'medical aid in dying'
- Dina Stander
- Sep 12
- 5 min read
A professor of nursing and public health solicited a 'collage of perspectives' from death care professionals on the topic of medical aid in dying. The goal is for their students to benefit from the varied reflections of people with feet on the ground. They asked for voice recordings for presentation later in the semester. Here is my offering on the subject, text on top but if you'd rather listen there is a recording button below. Consider this one death doula's take on medical aid in dying.
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Hello, my name is Dina Stander. I'm an end of life navigator, funeral celebrant, and grief educator. I work with dying people and their care circles as they make decisions about how they want to live until their last breath. I'm in Massachusetts where MAiD is not legal, but there's ongoing and robust advocacy towards legalization. My perspective about MAiD rises from my observations as a non-medical end-of-life professional, working with people with serious illness, terminal conditions, and also frail elders.
People have passionately held ideas on this issue. My perspective on MAiD evolves in a liminal zone between the two opposing camps, I'm not settled on either side. And to be transparent, I'm as deeply informed by my lived experience as a disabled person navigating the hellscape of the American medical and social care systems, as I am by my work in death care and bereavement with people concerned about reducing their own suffering before and after death.
It is common in doula practice to discuss options for self determined death with individuals, families, and care circles. We review MAiD procedures because it is available in the neighboring state of Vermont even to non-residents, as well as voluntarily stopping eating and drinking, or VSED. Both are options for proactively ending life rather than waiting for life to end on its own. VSED is legal everywhere, MAiD has more restriction. VSED happens over days to weeks, MAiD has legal requirements but once all that is satisfied, can commence swiftly. MAiD, even once you have all your ducks lined up, may not be a sure exit strategy. VSED is a heavier lift for the person's care partners but, as plans go, could have a more reliable outcome. In the US, only MAiD assumes a terminal diagnosis.
When someone asks if I support legalizing medical aid in dying, the bottom line answer you'll get from me is: it depends. It depends on the person saying they're ready to die and their circumstances and resources. It depends on the support systems they're engaged with. It depends on their perspective on their diagnosis and prognosis, as well as their relationship with mortality. It depends on whether they think MAiD is an easy way out of an otherwise impossible predicament. It depends on whether, with care and resources to support better quality of life, they might stop thinking self determined death is their light at the end of the tunnel. It depends on who they think they'd be unburdening by ceasing to exist on this plane.
I know that last point, burden, dips into the dramatic, but really we are talking about life, death, and the agency to choose between them. This is the big stuff! and shouldn't ever be a comfortable consideration. When it comes down to it I genuinely support personal agency. And I think opponents of MAiD usually have weaker arguments... at least until we drill down into the nitty gritty of whose life is worth supporting and whose is reduced to a burden. This is why I remain firmly in the liminal zone, neither for or against. Because, it depends! on all these considerations and more.
I'm going out on a limb here but I'll say it anyway. Many prominent MAiD advocates speak from privileged able-bodied white-people cultural assumptions when they tell me how much better the world will be with their legislation in it. And yes, I have seen people suffer long hard deaths with no exit ramp and no medical mercy. And yes, I would not wish that suffering on any living being. And yes, for clients of any cultural background who have a terminal diagnosis, choose MAiD, and are able to implement their plan, the right to choose is a mercy. And yes, I advise people to have a Plan B. Because things don't always go as we wish, hope, or otherwise determine them to. There are verified stories in the death-o-sphere about people who intend to die with MAiD but because even living with dying is living, wait just a little too long to implement their plan and tragically lose the capacity to self-administer the medications, as legally required. Even MAiD offers no guaranteed release from suffering.
Heres the thing. I'm not exaggerating when I say that most disabled people have heard the sentence, from friends and strangers alike, “if I had to live with [insert disabling condition here] I'd off myself.” Or, “I'd rather die than go through what you go through.” Let that sink in for a second… what would it feel like to you if someone implied your life is not worth living compared to theirs?
As evidenced in Canada and the UK, theres an eventual slippery-slope danger with MAiD - once it becomes culturally acceptable to die this way there's a tendency for society to broaden the scope of who is eligible to legally exit life. So if you're aging into or already navigating disability, which in the US almost always means you're living with less income and less health care access and potentially insecure housing, and if your loved ones are struggling to care for you because times are already hard, then you might think you'd be less of a burden dead.
My questions and perspectives are not popular in 'death positive' and doula circles but the disabled community knows well the tensions I'm illuminating here. Ethically, we have to consider how we measure quality of life, and who defines the top and bottom of the scale we measure with. And we can't stop there! In taking this measure we also have to consider meeting people's basic needs.
Health care access, adequate housing and food, transportation, and social support from family, friends, and community groups are considered essential components of a good life. Every person deserves a basic needs tune-up before we agree that their quality of life is irreparable and they should throw in the towel. I don't have any easy answers for how to structure all of this enquiry inside the framework of MAiD legislation, but if lawmakers don't consider the ethical gray areas then maybe this is all a bad idea.
I often worry that advocates for MAiD dismiss the concerns of disabled people. They're so focused on the goal of self determination that they lose sight of who is made more vulnerable to harm by what we are creating. The harms are not imagined. If the dominant social paradigm is that disabled people would be better off dead, then maybe medical aid in dying should be conditional on first improving the essential quality-of-life measures a disabled person experiences and seeing if they might, after all, be better off living. You see now? It depends.
I will vote yes for medical aid in dying in my state. When the legislation passes I will continue to lift the voices of disabled people into the conversation about how MAiD is implemented and whether it should ever be expanded to include people without terminal illness, as it has been in Canada and the UK. I will continue to advocate for resource access for disabled people so that our quality of life is improved; so that, for instance, if chronic housing insecurity is making someone miserable then fixing their desperation over that might be a better idea than offering an exit ramp.
So yeah, neither yay nor nay, hither nor yon, but right here! Knee to knee with my dying people. Carefully laying the groundwork for dignified endings, with or without 'assistance', as they prepare to sashay away.
