By Marianne Delorey Ph.D.
The patient’s autonomy always, always should be respected, even if it is absolutely contrary – the decision is contrary to best medical advice and what the physician wants. – Jack Kevorkian
After my mother suffered a stroke, she started asking to die. She was horribly uncomfortable and while she was a normally cooperative patient and easy-going person, she started fighting her medical team, refusing food, drink, meds and therapies designed to help her get back her functioning. The good news (if you can call it that) was that she had been 100% clear in her later years that she did not want to live if she was dependent. Her living will was clear, and she had had conversations with me and my brothers about what she wanted. Her instructions were solid when she was of sound mind, so when her thinking was impaired by the stroke, we were still clear on our mission – she wanted to die.
After her stroke, there was nothing wrong with her per se. The medications had controlled her blood pressure making another stroke less likely. She was not imminently in danger of dying so we did not think she would be eligible for hospice, but with agreement from both brothers and I, we talked to her medical team about stopping all meds, therapies, and nourishment.
Of course, they had seen it before. They may have even had a term for it – “failure to thrive” or something. They helped arrange transport to a hospice center and stopped all life sustaining care. They listed each item, one by one, making sure I knew what the medication or therapy did, checked the box to discontinue, and had me sign.
Since she was not sick and was not terminal, I had no idea what to expect when she got to hospice. What would happen if she started feeling better and eating and drinking? How long could she stay in hospice if she wasn’t actively dying? What would happen from there? But there was no going back. She drank and ate less and slowly declined until she passed five weeks after her stroke.
I think a lot about the morality of my mother’s choice and of our own choice to follow her directives. My mom was a very devout Catholic, and so I worried about how the Catholic church would view her choice. Even if she was clear on her decision, I wanted to make sure she would be “good with her God.” I consulted a nun about her autonomy, who reassured me that allowing herself to die would not interfere with her getting into heaven from the church’s perspective.
I also think about how different things could have been. In this case, I had to allow her to die; what kind of situation would I be in if I actively had to refuse her treatment to stay consistent with her wishes? Could I refuse her a drink of water? Could I literally pull the plug? Could I set her up in a Dr. Kevorkian suicide machine and encourage her to push the button? The church believes this is a sin; the greater society is mixed at best on this issue.
While these moral issues are certainly not decided, the right to autonomy of a dying patient has never been more at risk. After the Supreme Court overturned Roe v Wade, I realized that if the state can interfere with a person’s bodily autonomy for the purpose of supporting or maintaining life, older adults should be very worried about any overreach that threatens their right to refuse medical care or even choose a treatment that is less aggressive. If the court deems life the most important thing, people will not have the right to hasten their death and lessen their suffering. Elders and those that love them should be very careful about the next steps in this political quagmire.
Marianne Delorey, Ph.D. is the Executive Director of Colony Retirement Homes. She can be reached at 508-755-0444 or mdelorey@colonyretirement.com and www.colonyretirementhomes.com.
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