Dying is trendy.
I got an email the other morning about “celebrity deaths.” After the recent demise of David Bowie, Glenn Frey, and “Grizzly Adams,” it seems that everyone is doing it—dying, that is.
Apparently, people have been live tweeting the deaths of loved ones at least since 2013. Rock star docs such as Atul Gawande have created their own mini-industry writing about end of life care. There is “The Tibetan Book of Living and Dying” and “The Pagan Book of Dying” and “The Art of Dying.” A reality show can’t be far behind. No doubt, dying is a thing. And Boomers being Boomers, we want to do it our way. And do it better than anyone else. Kind of like workouts at the gym.
Yet, there is an enormous risk to creating impossible expectations about death. By defining an ideal “good death” we run the risk of leaving survivors with deep, needless guilt. It is hard enough losing a loved one, why add to the burden by measuring families against some often-unachievable benchmark? You know, the one where decades of familial loose ends are tied up and mom dies with a smile on her face, listening to the hits of her youth (maybe even the Eagles).
Of course, there is an upside to this trendy death business. Patients—and doctors—are paying more attention to end of life care. Fewer specialists are writing off terminally-ill patients who reject aggressive treatment in favor of comfort care. Palliative care is slowly gaining traction, though it remains a poorly understood specialty. Half of older adults participate in hospice before they die, though the system still ghettoizes the dying.
We are thinking harder about how we want to die, and where. A new study in the Journal of the American Medical Assn (JAMA) suggests that Americans with terminal cancer are less likely to die in hospitals than people in other major industrialized nations. More about that study in a minute.
But there is a downside to all this talk of celebrity death and dying our way. As my hospice chaplain wife reminds me, death is inevitably hard. No matter how much we try to create that good death, it may not always work out the way we’d like—or are told it should. In the real world, families don’t always resolve long-held conflicts. Sometimes we cannot perfectly manage pain or agitation.
Similarly, while it is nearly always best for someone to die in their own home rather than a hospital or nursing home, it is not always so. Some people can’t die at home. They may have no caregiver who can manage their discomfort or incontinence. Or they may have been hospitalized with a stroke or heart attack and can never be stabilized enough to go home.
The JAMA paper had many coauthors from around the world including Ezekiel Emanuel of The University of Pennsylvania, who wrote a controversial 2014 piece for The Atlantic suggesting that people over age 75 should not bother with aggressive medical treatment. In contrast to that bit of hyperbole, this is serious research. However, it seems to assume that site of death correlates with quality. In other words, our goal always should be to reduce deaths in acute care hospitals.
Well, we should. But hospitals are changing. They are increasingly turning to private rooms. Staff are learning to turn off monitors and alarms when they are no longer useful. Patients have access to hospital-based palliative care, support they rarely receive at home (because Medicare usually won’t pay for it). Despite the conventional wisdom, dying in the hospital may be best for some patients. The point is: There are no absolute rules.
Competitive death sounds like one of those Boomer things, like achieving six-pack abs. It strikes me as a singularly bad idea.