One of the more humane and reasonable, and not in the least bit sinister, proposals of health care reform has apparently been struck down by a combination of ignorance, fear, and cupidity. People who ought to know better, and people who didn’t know better and never bothered to learn, stoked the flames with their paranoid fantasy; they were aided and abetted by people whose interest is not in preventing “death panels” from killing innocent people who are “unproductive,” but in protecting the profits of a private industry.
The source of the wild fantasies of a Logan’s Run or Children of Men future, with a board of bureaucrats weighing the social utility of caring for the aged and infirm, was the innocuous proposal that Medicare cover
an explanation by the practitioner of advance care planning, including key questions and considerations, important steps, and suggested people to talk to; an explanation by the practitioner of advance directives, including living wills and durable powers of attorney, and their uses; an explanation by the practitioner of the role and responsibilities of a health care proxy.
Only the most creatively paranoid (or shamelessly partisan) could read this to say that health care reform
would make it mandatory — absolutely require — that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner.
Part of the problem is the euphemism and bureaucratese of “advance directives, … living wills and durable powers of attorney.” Death is the great taboo of the modern West, so we have trouble finding words that usefully describe what these tools provide: death with dignity, death with peace, allowing our loved ones and ourselves to die when the time comes. If the debate were phrased in more humane terms, perhaps there wouldn’t be so much rancor.
Our medical technology has allowed us to push the borders of life out in both directions; our ethics have not kept up. Just as we now know so much more about the unborn than we did just fifty years ago, and so are forced to confront the million horrible things that can go wrong in the womb, so also we can push the mechanical sustenance of life far beyond reason. After the murder of Dr. George Tiller, Andrew Sullivan collected many heartbreaking and nuanced stories about late term abortion. We need a similar collection of stories about what happens at the other end, when people hover on the precipice of death in a shadowland which they cannot leave.
When my mother died seven years ago, of complications from leukemia, she had an advance directive, a living will, and a do-not-resuscitate order. She was a nurse, and had spent her professional life in the medical system; she knew from painful experience how the Hippocratic Oath and our advancing medical technology have led to a nightmare of shadow lives for so many families. And I’m glad she had these documents, and had made these decisions when she was still able to do so rationally, reasonably, and with her heart and mind intact. Because I didn’t want her to die, and if it had been up to me to make that decision in her last days I might have decided badly. But we had a chance to talk about it, we discussed it as a family, and we were able to respect her choices.
An “explanation by the practitioner of advance care planning” is not a session with Doctor Death. It’s a chance to discuss all the decisions that need to be made around a person’s death, a conversation about how far the doctors should go to prolong life as it comes to its inevitable close. Some people, like my mother, will choose to go easily at the end; some will choose to “Rage, rage against the dying of the light.” In either case, it’s a choice, based on that person’s deepest beliefs and convictions.
A recent Radio Lab short, a reading from Mark Doty’s Heaven’s Coast, offers a beautiful, painful, sad, and hopeful vision of a loved one’s death, which stands in sharp contrast to Dylan Thomas’ Do not go gentle into that good night. Both visions of the end of life are legitimate; both are rooted deeply in the tragedy and mystery of mortality. Both should be options for us all. It’s perhaps the most private and personal of all our decisions, and so supremely sacred.
By eliminating the provision from the bill, though, we risk forcing that decision. Doctors are bound to sustain and extend life by whatever means are available, in the absence of a clear directive from the patient; when disagreements about the patient’s wishes arise because there’s no clear statement of their desires, the default position is to resuscitate and sustain. It’s from this sort of situation that the limbo life of Terri Schiavo emerges; it’s a recipe for tragedy.
People who already have good health insurance, or who are educated on the options they face at the end of their lives, can protect themselves and their families from this sort of tragedy. They can make their wishes known with binding documents, they can choose the level of care they desire, they can choose the quiet dignity of hospice or the long fight by any means necessary. The same opportunities should be extended to everyone, regardless of their means. And that’s all the “advance directive” provision was offering.
Sarah Palin, Betsy McCaughey, and Charles Grassley should be ashamed of themselves.