Dying in America
By Muriel Gillick, M.D.
20 September 2014
Reckonings editor’s prefatory note:
Muriel Gillick is a physician who publishes a weekly short essay on the science, medicine and experience of aging, moving as gracefully, productively, imaginatively and painlessly as possible through the last stage of our lives, and into the indelible mystery of death. Dr. Gillick says of herself, “I am a physician who specializes in the care of patients with advanced illness (palliative care) or advanced age (geriatrics), or both. I am also a professor at Harvard Medical School and a faculty member in the Department of Population Medicine with the Harvard Pilgrim Health Care Institute.”
Since it is where we are all headed, and tends to carry a burden of fear and aversion in our experience, especially as we age, death and the experience of dying have long drawn my attention. As to that aversion to death, Geoffrey Gorer, a British anthropologist, wrote a powerful assessment in his short essay on “the pornography of death.” As Dan Meinwald has pointed out, "Gorer makes some interesting observations on the difference between cultural attitudes toward death in the Victorian era and our own. In his 1955 article, 'The Pornography of Death,' [Encounter, October 1955, pp.49-52] Gorer points out that death is treated in twentieth century society much like sex was treated in the nineteenth century. The subject is avoided, especially with children, or spoken of in euphemisms if it cannot be avoided. Death now, like sex then, is hidden, an event which takes place behind closed doors. The opposite is also true: in the nineteenth century, death was discussed as freely and openly as sex is today. If, as Freud has postulated, society is founded upon--and defined by--its repressions, our society has undergone a psychological about-face since the nineteenth century.""
Dr. Gillick is doing her best, as you will see below, to bring about another, more informed and candid, about-face in this 21st century.
We need consciously to embrace dying—our own and others'—with the same mindfulness as we face the rest of our lives, with clarity, courage, compassion and open-hearted love.
For two more valuable perspectives on the Institute of Medicine's report, Dying in America, see the New York Times article, "Panel Urges Overhauling Health Care at End of Life," and a doctor's thoughtful op-ed essay, "When Medicine Is Futile."
Read, as well, a heart-wrenching and revealing story by Nina Bernstein in The Times on September 25, 2014: "Fighting to Honor a Father’s Last Wish: To Die at Home."
Finally, I vividly remember Bill Moyers's extraordinarily moving series of four films, produced in 2000:
On Our Own Terms: Moyers on Dying
"There is a great divide separating the kind of care Americans say they want at the end of life and what our culture currently provides. Surveys show that we want to die at home, free of pain, surrounded by the people we love. But the vast majority of us die in the hospital, alone, and experiencing unnecessary discomfort. Bill Moyers goes from the bedsides of the dying to the front lines of a movement to improve end-of-life care in On Our Own Terms: Moyers on Dying. Two years in production, this four-part, six-hour series crosses the country from hospitals to hospices to homes to capture some of the most intimate stories ever filmed and the most candid conversations ever shared with a television audience. The series includes: Living with Dying, A Different Kind of Care, A Death of One’s Own, and A Time to Change."
JRB
The new IOM [Institute of Medicine] report, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life”, is a masterpiece. Written in the matter-of-fact language typical of non-partisan reports by committees of experts, it makes recommendations with which no rational person could possibly disagree. Of course a few extremists have already gone on record as disagreeing: a spokesman for the National Right-to-Life movement was quoted in the NY Times as claiming that the report’s alleged focus on “cost slashing” would reinforce “well-founded fears” that advance care planning is intended to “push patients to accept premature deaths.” The truth is that the report says relatively little about cost and what it does say is simply that a side effect of following its recommendations, suggestions made in the spirit of improving the quality of care and assuring that patients’ wishes are followed, will likely be a fall rather than a rise in the cost of health care.
The report includes “clinician-patient communication and advance care planning” as the topic of one of its 5 recommendations, and it is presumably this section that is the core of the right wing critique. But the explicit goal of advance care planning is to enable patients to participate in decisions about their health care and to make those decisions in accordance with their values, goals, and (informed) preferences. The report rightly recognizes that this isn’t going to happen unless clinicians take the initiative and that all the planning in the world will be inconsequential unless it is implemented when you become ill. The idea that discussing what kind of medical care you want near the end of life is tantamount to suicide is patently absurd. It would be more accurate to say that failing to discuss your wishes is tantamount to assuring you will spend your final days in the hospital, tethered to machines, and in pain.
While the recommendations of “Dying in America” are straightforward and unobjectionable, they are also cleverly designed to be “actionable,” to lead to concrete steps to promote change. Its recommendation regarding the delivery of care states that “government health insurers and care delivery programs, as well as private health insurers, should cover the provision of comprehensive care for individuals with advanced serious illness who are nearing the end of life.” This is in marked contrast to the language of the IOM’s 1998 report, “Approaching Death: Improving Care at the End of Life,” which addressed the same theme by urging that “people with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.” The only way that patients can expect to receive this kind of care is if the delivery system provides it.
In a similar spirit, “Dying in America” tackles professional education and development by urging that certification, licensure, and accreditation of clinicians require evidence of competency in palliative care. By contrast, the earlier report exhorted educators and other health professionals to “initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to care well for dying patients.” Without specifying what those changes are or requiring that they be reflected in licensing exams or accreditation processes, not very much will—or did—happen.
Finally, the new report singles out payment systems as critical to promoting change, suggesting that health care delivery systems—the networks of hospitals, doctors, and clinics that actually provide medical care—must provide the services that comprise comprehensive palliative care and health insurers must pay for them. The preceding report acknowledged the role of financing, but embedded its recommendation amongst a series of quality improvement measures and spoke in very general terms of the need to “revise mechanisms for financing care so that they encourage rather than impede good end-of-life care.”
The weakest recommendations of both old and new reports on dying are for ongoing public education and engagement. Other than the specific suggestion that professional societies should publish brochures and that government agencies should support relevant research, there is little beyond a vague exhortation that faith-based organizations, consumer groups and others talk about the end of life. Previous public engagement campaigns, of which the Robert Wood Johnson’s multi-million dollar “Last Acts” program was the most spectacular and the “Conversation Project” the most recent, proved disappointing. Perhaps the forthcoming campaign, to be supported by the same anonymous donor who subsidized (but had no control over the contents of) the current report, will elaborate further.
My main concern is that this spectacular report will be filed away, as happens with so many comprehensive, thoughtful reports on all sorts of topics Certainly the IOM has had some notable successes. “To Err is Human: Building a Safer Health System,” issued in 1999, did shine a bright light on medical errors and catalyzed efforts to make American hospitals safer. But the IOM has produced 898 reports, according to its website. How many of those have had an impact and how much impact have they had?
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“Dying in America” lays out the facts and the arguments. It offers "actionable" recommendations, but the question is whether anyone will act on them. The implementation campaign must begin now, otherwise this magnificent report on “dust to dust” will go into the dustbin.