How to die…and not
Let’s start with a pull quote:
The problem is that nowadays there is simply no societal agreement on how people who are sick or disabled beyond hope of cure ought to be treated. Many people, especially highly educated, nonreligious people, think that “physician-assisted death” is exactly the right way to go — or to send off your unconscious mother. If you think that bioethicists will erect safeguards against this sort of thing, think again.
This WaPo op-ed piece is the best and clearest writing I’ve seen on the dilemma of dying today. The stark common sense of it is so refreshing because it’s so uncommon now, that sense and reason. It’s one woman’s story that’s anybody’s story, a brief and personal account about facing medical treatment by first signing away….quite possibly your life.
A routine mammogram had revealed that I had early-stage breast cancer. This kind of cancer is noninvasive and thus not particularly life-threatening if promptly attended to, and the required outpatient surgery isn’t especially risky. Nonetheless, one of the shoals I had to maneuver through at the hospital (which otherwise afforded me excellent care) was a series of efforts to persuade me to sign on to the currently fashionable notion of a “good death.”
Devious wordplay.
Those efforts came in the form of a living will, one of those advance directives on end-of-life care that are currently urged upon us all by such high-minded organizations as the American Medical Association, the American Bar Association, state laws and an array of policymakers, bioethicists and advice columnists. Even this newspaper ran a long article in its business section this year advancing the notion that you haven’t got your life in order without a living will.
It has been a sustained marketing campaign over time, ramped up in the past two years, to change the thinking of an entire culture. And it has succeeded in at least confusing most people about what they should do.
Whether to have a living will is presumably up to the patient. But I’ve developed a sneaking suspicion that someone else may be hoping to call the shots. After three attempts to induce me either to sign up or to state my refusal to do so in writing, I had to wonder how voluntary a living will really is in many cases. In my case, I started to feel ever-so-slightly harassed.
When I showed up at the hospital for some pre-surgery medical tests, one of the receptionist’s first questions was, “Do you have a living will?” The form she gave me after I shook my head was as complicated as a tax return. There were numerous boxes for me to check specifying a range of conditions under which I might like to have a Do Not Resuscitate order hung over my hospital bed, whether I would want to be denied “artificial” food and water under some circumstances, what I thought about being taken off a ventilator, and so forth.
Furthermore, I found something weasely in the way all those options were presented, as though my only real choice were between being dispatched into the hereafter at the first sign of loss of consciousness or being stuck with as many tubes as needles in a voodoo doll and imprisoned inside a ventilator until global warming melts the ice caps and the hospital washes out to sea. I found the box on the form that said “I decline a living will” and checked it. Right now, my husband is my living will, and after we spent 13 days observing Terri Schiavo exercise her “right to die” by being slowly dehydrated to death after her feeding tube was removed in 2005, he knows exactly how I feel about such matters.
But fewer people now know these things, and as clearly as Charlotte Allen does, because of all the euphemisms and propaganda.
In fact, when I contemplate the concept of “dying well,” I can’t avoid the uneasy feeling that it actually means “dying when we, the intellectual elite, think it is appropriate for you to die.” Consider what’s happened in recent years: The classic Hippocratic Oath and its prohibition against physicians giving people a “deadly drug” has collapsed with the growing acceptance of such notions as physician-assisted suicide, the “right to die,” and even giving some very sick, disabled or demented people a little push over the edge, as seems to be the case in the Netherlands. People facing end-of-life decisions may well feel subtle pressure from the medical and bioethical establishments to make the choice that will save the most money, as well as spare their relatives and society at large the burden of their continued existence. A “good death” — that’s the English translation of the Greek word that begins with an “e.” You know, euthanasia.
When you encounter this dilemma, it’s startling. Last year I ran into it when my father was in a rehab center in another state and I went to see him and help update his records and paperwork. I was startled to see that someone had checked the “Do not resuscitate’ box on his papers, and I was actually challenged when I re-did it all, by people who wanted to make certain I actually understood what that meant in the event my father collapsed on the floor or something. Oh, I understand alright, and I want the people around my loved ones to be clear on it, too.
Read this article, the whole thing. Further down, Allen cites a Hasting’s Report about Americans and living wills, and she critiques it well.
According to the article’s authors, it seems that people talk a good game about living wills, especially when they’re healthy, but when their health begins to fail, they often have very different ideas about what they would be willing to undergo to stave off death for a little while.
That’s a critical point.
Furthermore, according to a 1990s study by the National Institutes of Health, even when patients have living wills, if those wills contain directives with which doctors and hospitals disagree (such as, I myself suspect, prolonging the patient’s life instead of terminating it), many doctors simply ignore the patient’s desires. Living wills, it would seem, are effective only if they happen to comport with doctors’ and bioethicists’ own theories about what is best for the patient anyway. For this reason, the authors of the Hastings study propose that instead of filling out a living will, people execute a durable power of attorney, a simple document that entrusts decisions about end-of-life care to a relative or friend who shares the signer’s moral beliefs about death and dying. That sounds about right to me.
And to me. I did one with my father, and secured it in the important places and made sure people were aware of it. In the current climate of bioethics pervasive at many (most?) health care facilities, I feel the pressing need to get the rest of my family safely secured from decision makers driven more by utilitarian concerns than moral beliefs in the sanctity and dignity of life, in all its stages.