The cause of death listed on my grandmother’s death certificate is embolic stroke. The line below that simply adds: “Coumadin noncompliance.”

No one says my grandmother wanted to die – I assure you, she didn’t. No one says my grandmother killed herself – but semantically, one could argue that she did. She knew what she was doing when the doctors told her that her diabetes had caused wounds to her legs that would never heal, that amputation was her next and only treatment choice. She quietly stopped taking the life-saving medication that thinned her blood and prevented blood clots from traveling to her brain, thereby ending her life in a stroke.

Two weeks later, we said goodbye to her as we dipped mouth swabs in coffee milk and Bailey’s Irish Cream and gave her the last tastes of the things she loved. It was a fitting ending for such an amazing woman; she was strong and passionate and an incredible role model, and then she was gone, not because she wanted to die, but because she would not suffer that way, and she knew how and had the means to end her suffering.

I meet people who are dying every day. I rarely meet someone who wants to die. Most of those glorious outliers have been salty characters of many collected years, who have watched their friends and loves go before them; they are at peace with its being “their time.” That is who I find “wants to die,” but even for this group, letting go of the sweetness of life is difficult. As for the others, mostly I find they want to live, and are at various stages of reconciling how one can desperately want to keep living when the option no longer exists. In heartbreaking moments, they rewrite their life goals. When they no longer have more time, what becomes most precious are things like family, love, comfort, communication and perceived dignity.

I hear the argument all the time that palliative sedation or the withdrawal of treatment isn’t “expediting death” and that the difference is in intent. Specifically: The intent of these actions or treatments is not to end life or to hasten the end of life but to relieve suffering. I have long stood behind this premise and idea. What I find difficult to comprehend, however, is the idea that apparently only a physician or a qualified hospice or palliative care worker can relieve suffering, and that they can do so only by providing palliative care.

Most people facing their mortality don’t want to die. My grandmother didn’t want to die. Their intent – as hers was – is to end their suffering. Shouldn’t their intent matter, too?

The reality is, if my grandmother were here today, I have every faith she’d be a champion of death with dignity, just like she always was for rights for people with physical and mental disabilities and other worthy causes through her life. She believed in how precious a human life was, no matter a person’s capacity or abilities, but she also knew what gave her life quality and where, for her, the line was between living and no longer being able to live beyond personal suffering.

She was, in many ways, lucky. She had been prescribed something (Coumadin) that could cause catastrophic effects (massive stroke) if she stopped taking it, and she did. She had advance care planning that called for no intervention. And the damage from the stroke was severe enough that she didn’t linger and fade away in the very manner she was trying to avoid. Why, however, should she ever have had to risk a drawn-out death via “Coumadin noncompliance”? Her intent was always to live purposefully, comfortably and in charge of her faculties, on her terms, without suffering. When that was no longer an option, neither was life. It was her body, her choice, her intent, her courage – as it should be for every citizen of Maine.

 


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