Musings on Mortality | Deborah Alecson: Patient-centered care feeds death phobia


Ian Morrison, Ph.D., starts a piece that he has written for the online newsletter Hospitals & Health Network (March 3, 2015) as follows: "As a Scottish-Canadian-Californian, I have always said that I have a unique perspective on health care and all things to do with health care, including death and dying: The Scots see death as imminent. Canadians see death as inevitable. And Californians see death as optional." Stephen Jenkinson, whose lecture I attended recently, would replace "health care" with "disease management" to be more accurate. Later in the article Morrison writes, "6 percent of medicare patients who die each year do make up a large proportion of Medicare costs: 27 — 30 percent."

It is not just a Californian notion that death is optional — it is the American way. For 6 percent of people who are dying to use 30 percent of medicare costs is a grave and serious malady to be examined. The trend is to aggressively treat older and older people in their final months of life. And, there are more and more older people to treat. A statistic from the 2014 report from the Administration on Aging is, "The population age 65 and over numbered 44.7 million in 2013, an increase of 8.8 million or 24.7 percent since 2003." Egads!

How did it go so wrong? In a culture such as ours, it all makes sense. Combine death-phobia with the American worship of autonomy and our latest focus called patient-centered care, and you have a population of people totally unequipped to know when their time has come to die and to act accordingly. Dying in America is not a natural process that is inherent at our birth, but a disease process that must be treated. Dying in America is not the normal ending of our lives; it's a medical crisis.

Autonomy, the alter at which we pray, has some devastating consequences. It gives each of us permission to remove ourselves from the environmental, social and economic repercussions of proceeding as if death is optional. It puts the presumed good of the individual before the good of society. As a result, we ask to have our lives prolonged even if that means continuing to populate a planet that is already unsustainable for human growth. We ask the generation that we brought into the world to pay for our care. We use up disease management dollars on ourselves instead of on those who are not dying and do need treatment to return to health.

A patient-centered focus is the backlash from paternalism in medicine. But I wonder, how can we expect or assume that a patient who has learned that death is optional and has never considered the necessity and blessing of his or her death, to know what he or she wants except, obviously, to stay alive and be kept alive at all costs? In a patient-centered paradigm, where lies the responsibility of the physicians to make it clear that being treated while you are dying means a lot more suffering?

If we were not a death-phobic culture, then the last months of dying would not be the most expensive in the course of one's life. I can't think of anything less expensive than normal dying, actually, compared to active living. Dying is a time of not using resources and yet in America, it is a time to use the most. How has it become that dying is so damn expensive? Who is to blame?

And what about dying as something to do well? How do we get dying back into the rhythm of things? Is it possible for each of us to die by using our dying time to teach others who are certain to follow?

Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at


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