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Three events led me to bring up the questions I’m asking about dying well.
-A few months ago my friend Karen wrote that she was planning soon to end her life by VSED, Voluntary Stopping Eating and Drinking. She was 83 years old and felt that her health was declining to a degree that she could not do the things that made her life meaningful. About ten years ago she was diagnosed with early cognitive difficulties. She made dramatic changes to her life and seemed to be doing generally well, but we were not in direct contact, so I don’t know her exact difficulties. We had spoken some 25 years ago about her intention to end her life when she felt it “was time.” She died at home with caretakers in just four days.
-About a week ago my neighbor and good friend Cathy was diagnosed with metastatic cancer in the linings of her lungs, full diagnosis pending lung biopsies this week.
-Two days ago I read the New York Times article Susan linked.
I was particularly “caught” by the realization that I didn’t know how we could continue living in our current home if my wife or I could not climb the stairs due to injury or stroke.
I found the image of myself living after a serious stroke very disturbing.
Although I can imagine altering one of our downstairs rooms to fit a hospital bed, I had to imagine how much my studio/office would have to be changed.
Would I give up my musical instruments to make space? Would I have use for them if I were half paralyzed?
What would my life be if I could no longer pursue the musical, woodworking, community service and forest care projects that give me much pleasure?
I think of a scale of dying.
Dying could take minutes, hours, days, months or years.
It can be a process of gradually grow weak, or it could involve significant pain, disability and cognitive loss.
About a year ago my neighbor Gracelyn died during a surgical procedure on her spine. She went into the hospital and two days later she was taken off life support, never becoming conscious.
That, I’d say, was a quick and easy death.
Some years ago I spent a lot of time with a friend during his last months as cancer spread throughout his body, eventually his brain. He had several good friends and excellent insurance and savings, so he died in his home with round-the-clock care.
Another friend and I were in bed with him holding him as he died.
His last months were filled with love as he said good-bye to his friends and made a small trip to see the ocean.
There was a lot of beauty in his last months.
Decades ago I cared for the wife of a friend and teacher. She’d had a massive stroke and was disabled both physically and cognitively. It was a very difficult situation that went on for five years or more.
Though I’ve taken all possible steps to have a “good death,” I realize there is much that can’t be predicted, or insured against.
Because of Karen’s VSED, I read about someone who ended her life this way, knowing that she had Alzheimer’s disease, and that she needed to do this process while her mind was still intact enough to plan and follow the protocols.
So, to simplify my concern, I’d say that the possible uncontrollable aspects of dying have become more “in my face,” and I’d like to hear about other folk’s experiences of this.
How do we imagine, think about and perhaps make some defensive plans in case of a hard and extended experience of dying? How have you grown while considering these unknowns?
Thanks,
Ed
Replies to "Three events led me to bring up the questions I’m asking about dying well. -A few..."
@edsutton: Thank you for bringing up the topic of VSED (Voluntary Stopping of Eating and Drinking). I just want to underscore this is a medically complex decision that needs to be explored and carried out fully by someone with a terminal or progressively chronic illness who is mentally competent and motivated to understand the implications of the decision and is willing to stand by them, have people to support them in their committment overseen by medical professional(s). Although the body can typically survive 4 days without water, people who elect VSED can occasionally survive up to 2-3 weeks.
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@edsutton My dad had a series of strokes in his late 80s. He stopped eating and drinking and died within a week. I'll never know if this was a well thought out plan or perhaps just an intuitive response to being so ill--much as my beloved pets have all done.
I myself had a classic near death experience in an ICU when I was 21 (now 72). I had swine flu, sepsis, and extensive surgery. So I want to say that the experience of almost dying is not like thinking about it rationally. I was not in this world. I had no concerns about people I loved, things I possessed, or plans. My body knew how to die. Of course I didn't, and although I'm grateful it was very difficult to be yanked back into this world. I don't have any metaphysical or religious beliefs based on this experience, but although it was painful I permanently lost some of my fear of death. It is natural. It will work out, particularly if we limit medical intervention at the end. That said--I have a burial plot, pre-paid funeral, will, DNR, etc. Most important, my husband and I just had a meeting with daughter and son-in-law to discuss pretty much everything pertaining to end of life. These plans are useful. But the experience of dying is going to be its own thing, and I believe in most cases the body's natural responses will make it tolerable. Thanks for the great discussion--one of many thoughtful topics you've posted.