“Death with Dignity” – why now?

Last updated on: February 26, 2015 at 11:10 pm by Jane the Actuary

“Death with Dignity” – why now? 2015-02-26T23:10:00-06:00 Jane the Actuary

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A follow-up to my post on Friday rejecting the label “death with dignity”:

Sure, the answer to the question, “why has the ‘death with dignity’ movement gotten such traction now” is in part as simple as “because society has become secularized, and people aren’t as bound to religiously-based anti-suicide beliefs any longer.” But that’s begging the question, isn’t it?

After all, that implies that the only reason to live in the face of pain and incapacity is a religious belief that to do otherwise is a mortal sin. But even absent that, there has to be a reason for the change rather than continuity.

And this is my two-fold speculation:

First, there’s a historical context. No, I don’t mean that medical advances keep people alive longer, leaving them needing care as they age rather than dying of heart attacks in their prime. I mean (this is speculation, mind you) that the multigenerational families of the past would have meant that, even if people hadn’t themselves grown up with a grandparent living at home, they might have known a friend or neighbor who did. Now, for the most part, the dependent elderly live tucked away in nursing homes or at their own homes, with home health aides, and their experiences are reduced to horror stories of adult diapers.

But more importantly, in 21st century America, the prime value for a growing number of people is maintaining control over their lives.

It’s why unplanned pregnancy is intolerable, as is a planned pregnancy when the baby is diagnosed in utero with a disability. And why, in part, a growing number of people don’t marry, even an a long-term relationship (that involves compromise, and risk of undesirable behavior by the other party). It’s the demand that many people voice to be able to do whatever they want, whenever they want. And a severe disability means living a life without control.

It’s now being reported, in People magazine (via Drudge), that Brittany Maynard, the woman with brain cancer who made headlines by announcing that she planned to kill herself in Oregon, has now followed through on this plan. The article in People was pretty bad in its labelling, using the phrase, “death with dignity” uncritically throughout, and stating that she decided to kill herself because she could “feel [her]self getting sicker.” It says that, after an Oct. 21st Grand Canyon trip, “she had her ‘worst seizure’ so far, [and] said: “The seizure was a harsh reminder that my symptoms continue to worsen as the tumor runs its course.”

She wasn’t suffering. She was afraid of the suffering to come — and, more specifically, of the lack of control.

Here’s a story I found about a woman’s experience in caring for her husband in his last months and days before dying of brain cancer. She doesn’t speak of him suffering or being in pain. She speaks of him losing his competence, first, and afterwards requiring direct physical care, and, from what I understand, that’s what Maynard wanted to avoid.

And in the Washington Post article I referenced on Friday, there’s a quote on the reasons people choose to end their lives:

In Oregon, at least eight in 10 say they made the choice to end their lives because they fear losing autonomy, losing dignity, or that they’ll be less able to participate in activities that make life enjoyable.

In other words, people did not choose suicide because their present situation was intolerable, but because they feared for the future.

The survey itself, in fact, presumes that this is the case: all patients are required to complete a questionnaire and the Oregon Public Health Division reports the results; the actual question isn’t shown, just the shorthand “End of life concerns” – which are (obviously, individuals could select multiple answers):

Losing autonomy – 91%
Less able to engage in activities making life enjoyable – 89%
Loss of dignity – 81%
Losing control of bodily functions – 50%
Burden on family, friends/caregivers – 40%
Inadequate pain control or concern about it – 24%
Financial implications of treatment – 3%

Which makes it clear that doctor-assisted society-approved suicide is not about intractable pain, but about patient fears for their future. And, in fact, this report and the questionnaire itself take it for granted that these negative impacts haven’t happened yet. Is it the case that these suicides are generally among those who have not yet begun to experience their deterioration yet, and whether those at a later stage don’t afterwards seek out suicide because they conclude that life is still worthwhile even so?

Anyway, I never fully answered the question. Why is control so important now? I would speculate that this is because, in the past, it was clear that we could not control our lives. A child could die of diptheria or polio or the measles. The economy could crash in a devastating way and destroy our life savings or (more distantly in the past in the United States) famine could pose hardship to the point of suffering and death. War could take your life or the lives of your loved ones — whether because you’re in the path of an invading army or because you or your loved one has been drafted and sent overseas. Or, until very recently, you could be diagnosed with cancer and sent, not to the oncologist, but simply home to die. (My mom was a nurse — she entered training in 1957, back in the days when you became an R.N. through a sort of work-study program rather than through college, since she knew her family couldn’t afford to send her to college, and this was her experience.) Beyond that, there was a lot about your life that was pre-ordained, e.g., your job and your expectations of family life.

Now, most of the time, we can control a lot about our lives. Sure, we still live with the uncertainty of whether our employer might, even out of the blue, issue a pink slip, but we expect the rest of our lives to go as planned, in a way that our ancestors never would have. And as a result, we want a way to take control against the declines and impairments of old age or serious illness.

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What is "death with dignity"? Or dignity, for that matter?

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