When I was a newspaper copy editor, death was death. There was no getting around it, no matter how much a kind-hearted writer wanted to soften the blow. And so when that journalist wrote in an obituary or other life remembrance that the individual “passed away,” my job was to replace the euphemism with clarity and call it what it was: Death.
I thought about this a few years ago when a sibling called to tell me Mom had “passed on.” It didn’t help my sadness to think Mom hadn’t died, but instead had “passed on.” But that was no time to play copy editor. I thought about this again while reading the New York TImes story headlined “U.S. Alters Rule on Paying for End-of-Life Planning” (January 5, 2011). The story told of the Obama administration’s decision to delete references to end-of-life planning from Medicare regulations covering annual physicals under the new health care law. (http://www.nytimes.com/2011/01/05/health/policy/05health.html?_r=1&emc=eta1)
Deleting reference to voluntary advance care planning, according to an administration official quoted in the Times, “should not affect beneficiaries’ ability to have these voluntary conversations with their doctors.” I’d like to think this is true, and I don’t doubt that the phrase “voluntary advance care planning” would become ammunition for those who would gut the new health care law for fear of federal government. Perhaps the deletion will help the health care law survive the new Congress.
As a colleague on the Community Ethics Committee pointed out, the health care law got in trouble for allowing the doctor to charge for his or her time in discussing voluntary advance care planning with the patient. These conversations are crucial to helping a patient understand options and set goals of care. Now, those discussions may continue, but they won’t be "billable" in a pure sense. As such, they are not systemically encouraged, and these doctor-patient dialogues need to be systemically encouraged, for ethical reasons, for economic reasons, and simply to encourage good care.
The Minnesota Star-Tribune said it well: “Advocating end-of-life care planning does not equal end-of-life advocacy.” This is an important distinction, and it is lost in the Medicare policy change, a political change with no regard for the conversation that is surely taking place right now on an intensive care ward in which the patient has no say in his or her own fate. Perhaps the patient would like to die at home, as most would, but it’s too late for that choice to be considered. Perhaps the patient would not want extreme measures to extend life, but the family doesn’t know that, because the conversation never took place. Perhaps well considered “goals of care” would clarify the path ahead, but the unconscious are past the point of goal consideration.
I’m not worried about those doctors already artful and gifted at the end-of-life conversation, or the patients and families who approach death with grudging acceptance and eyes wide open. They don’t need the support of clearly stated policy. I am worried about the doctors for whom this conversation is an artless dance, at best, and end of life is a topic that is somehow taboo. I am worried about their unfortunate patients, and the nurses caught in the middle, burning out fast, and thinking about a career change.
If the end-of-life dialogue survives this Medicare language change, that’s what matters most. And maybe it’s wise of the Obama administration to avoid the controversial language while upholding the integrity of the policy. That, too, is an artful dance.
But the end-of-life conversation between doctor and patient is a sacred exchange. It is perhaps the ultimate intersection of art and science. It is enormously difficult, and doctors and patients are not uniformly able to explain or comprehend. This makes it all the more important that the conversation not be put off until the patient is no longer conscious, which occurs far too often. This is unthinking. It is cruel to family members who must make brutally hard choices and guess what the patient would have wanted. It unnecessarily compromises the doctor’s guidance for care. And it’s a sad reflection on the state of a nation that prides itself on its medical care, but on the subject of death would rather pass.