When I was about fifteen, my great grandmother moved into a large nursing home on Long Island. She had dementia and also suffered from a seizure disorder which caused her to lose consciousness frequently. So, at the age of 80 (or so), she was admitted to the long-term care facility where she spent the last year of her life.
I visited my great grandmother at the home at least once a month. I hated those visits. It’s been nearly 33 years since I stepped foot in that place and my memories of it have mostly faded. What’s left are vague, visceral impressions — the smell of urine, the cries of confused patients, the withered figures tied to their wheelchairs sitting alone in hospital-grade hallways.
My great grandmother’s room seemed like a prison to me. How could it not? I was impossibly young. The truth of illness and aging wasn’t something I’d ever thought about. Seeing such stark evidence of it scared and disgusted me. After she died, I was relieved that I didn’t have to go back there, but the bleak reality of the place haunted me.
A few years later, at the age of 18, I wrote a short story about a young woman who had a degenerative disease that required she be admitted to a nursing home — an exact replica of the home my great grandmother had lived in.
I’d called it “The Sunshine Rest Home” because the places where we send our elders to die always seem to have cheerful nature-inspired names. The title of my story was Disappearing into the Sunshine.
Avoiding a bad death
Lately, I’ve been taking stock of my mortality. I’ve become preoccupied with the possibility of a bad death. For me, this means dying in a place like my great grandmother’s nursing home — or in the hospital — far from the comfort and quiet of home.
My great grandmother died within a year of being admitted to what amounts to an institution. Hers was the first funeral I attended. I don’t recall how she died, only that I was relieved that she didn’t suffer in that awful place for too long.
I often wonder how she must’ve felt, in her confused state, to be in that buttoned up building with its strange smells and strange people, sitting in her featureless room, completely alone. Did she die a bad death in that place of bright, antiseptic confusion?
I don’t want to die like in a place like that. Most of us don’t, but institutionalized death is not the exception in the U.S., it’s the rule. That’s why I’m writing about it now, while I’m still healthy (if no longer young).
Research has shown that 80% of Americans would prefer to die at home, but fully 60% of us die in hospitals and 20% die in nursing homes.
Hospice care, which focuses on alleviating the discomforts of the terminally ill and dying, can help more people remain home, but only a minority of people utilize this service.
Even when they do, dying patients are typically referred to hospice during the last few weeks of their lives. By then, it has likely failed to keep them out of the hospital or save them from weeks (or months) of hospital stays and painful medical intervention.
The case for a good death
Everyone has their own unique idea of what it means to die a good death. My own vision of dying well is extremely tangible. I want to die the way my daughter died, at home and surrounded by people who love me. I want music to be playing and natural light to be shining through my windows. I want my tiny dog to be an arm’s length away.
I want someone who loves me to hold my hand.
My daughter was 15 when she died of cancer. Her doctors made it clear that she was terminal about nine months before her death. This gave us time to consider how to help her live well until the very last moment.
I wrote about this process extensively, so I won’t rehash it here. What I will say is that it forced me to confront death for the first time in my life. When your child is dying, there’s no room for denial. There’s simply no room.
I was tasked with helping my daughter die a good death, free from pain (as much as possible) and to honor her wish to die at home. That meant I needed to learn about clinical death — the actual physical process of dying. I also needed to understand what role doctors, hospice workers, and family played in a dying person’s life.
Side note: It is not always possible to die at home, even for children with cancer. Sometimes pain can’t be controlled. Sometimes symptoms, like a bowel obstruction, cannot be managed. You can still have a good death in a hospital, but you need time to prepare.
My daughter’s pain was manageable and her organs functioned until the very end. Her wish was to remain home. Thanks to hospice, palliative care, and the benefit of planning, we were able to make that happen for her. In that sense, she had a good death.
Perhaps I’m selfish. I want a good death too. I want to be the one to die next, before I lose anyone else. I don’t want to live to be one hundred. I don’t even want to live to be eighty.
The case against longevity
Middle age typically spans from about 40 years old to as late as 65, by some definitions (an exact age range was nearly impossible to find). This implies that, at a minimum, a person will live to age 80 and perhaps one person in a million will live to reach 130 (officially, the oldest living person was Jeanne Louise Calment of France, who lived to be 122).
I can’t imagine living to age 80, much less 122. What is the benefit of living to a ripe old age, being kept alive by medications and machines, if it equals a bad death? Some people say it beats the alternative, but I disagree.
I used to buy into the desire we share as Americans to prolong our lives and our youth without regard to the quality of either. I had to let that go when my daughter got sick. I completely abandoned it after she died. After all, how could I continue to view death as something remote, something that happens to other people, when it happened to my own daughter?
Living as long as I possibly can is not a game I’m interested in playing anymore. I’ll be 48 on Sunday. As far as I’m concerned, I’m well past middle age. The odds that something will happen, some kind of devastating illness or diagnosis, are increasing. To ignore this fact is to live in denial. At my age, I believe living a good life requires planning for a good death — but how?
Talking about death
Obviously, it’s impossible to predict how you’re going to die. Even after my daughter’s cancer became terminal, her doctors couldn’t answer the questions, “How, exactly, will she die? Will it be from the lung tumors or a bowel obstruction? Will her heart stop?”
In fact, they balked at these questions. When pressed, they could only speculate the course of her death based on their own experience of children with similar advanced cancers.
So, for someone like me who is relatively healthy, there’s no way to know what shape death will take.
It’s tempting to ignore the inevitability of death when life still pulses and swirls around me. I imagine this is true at any age. Even so, discussing the different ways that I might die will help my husband and family ensure that I have the best death possible. (I realize this doesn’t guarantee that I won’t end up in a sterile nursing home in thirty years, but it’s something.)
These aren’t easy conversations to have. It means talking about forgoing preventive tests and, potentially, curative treatment in favor of living life to the fullest. It requires an understanding of things like living wills and DNR orders. It might require taking on some burdens that we’ve gotten used to outsourcing to doctors and other healthcare professionals.
It means potentially engaging with hospice and palliative care well before we think we’re ready to and this can be the most difficult decision of all because people tend to think of forgoing treatment as giving up on life.
The promise of a few more years is very seductive, but there is a tipping point when invasive tests and treatment do more harm than good. None of this is comfortable to talk about, but it’s a conversation we all need to have with each other if we want to maintain some control over how and where we die.
If we ignore the topic of dying until the crisis is right on top of us, we risk missing our opportunity to plan a good death. That’s what I’m trying to avoid. We only get one shot at this, after all.