News and Narratives of Interest – 2015 (#1)

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Some days I think I am an optimist—about death and dying.  I know that sounds like a contradiction, but my optimism reflects what appears to be a culture shift taking place, a land mass moving right under our feet.  Now I may indeed live in a rarified environment, one in which people talk about death and dying, discuss having the “conversation” about treatment choices at the end of life, celebrate the spread of palliative care, and, in my case, teach courses on memoir and literature around death, dying, and caregiving.  But really, there are signs that the ground is shifting all around us.

In our last “News and Narratives” column we mentioned Atul Gawande’s Ariadne Labs, and the checklist being developed to help physicians have the difficult conversations with patients and families around advance care planning.  Since our last column, Gawande’s book Being Mortal has been published to great critical acclaim, but rather than languishing on the bookshelves populated by experts in “the field,” Being Mortal is now #5 on the New York Times bestseller non-fiction list. You can read the reviews on your own, or, better yet, read the book, and you can also watch the PBS Frontline based on the book and featuring Gawande.  Gawande’s focus is really on how we can live the life we choose during the end of our lives.  He shares his father’s own decisions at the end of life, and looks at some hopeful signs of change as well as some difficult challenges.

Gawande is, as Oliver Sacks said, “one of our finest physician writers.” A less fluid read, perhaps, but just as important as a recent national voice is the Institute of Medicine’s report, Dying in America: Improving Quality and Honoring Preferences Near the End of Life. Not many of us will get past the eight page summary, but that’s ok.  The importance of this report, according to bioethicist and WELC Board Member Bruce Jennings, is that its recommendations shift the onus from the individual to the health care system, government agencies, medical professionals, and even insurers to improve the quality of care for people living with dying.  Again, while there is important advocacy and educational work being done around the need for individuals and families to have “the conversation,” and to do their own advance care planning, the IOM report recognizes that the health care delivery services, professional associations, educational institutions, the federal government, and civic and community leaders must work collaborative to change the quality and culture of care at the end of life.

Ira Byock, in a recent New York Times opinion piece, makes a different recommendation—or demand.  Byock is one of the physician leaders in the field of hospice and palliative care.  He led the movement in the 1990’s for community-based end of life education that nourished WELC in our early years, is past president of the American Academy of Hospice and Palliative Care Medicine, and has made the news most recently for his argument with radio host Diane Rehms over assisted dying.  But back to Byock’s call for action.  The IOM, points out Byock, has published numerous reports since 1997 documenting the fact that most people want to die at home, surrounded by people they love, and receiving only palliative and comfort care.  Yet it is also a fact that only 45 percent of Americans die at home with hospice care, and nearly half of those receive this care for two weeks or less, most after suffering intense, aggressive, and futile treatment in the hospital. The public should be irate. Why are Americans not clamoring for change.  “We need outrage,” writes Byock, calling only half facetiously for a “Safe Dying Act.”

Yes, public outrage would be helpful.  Byock suggests that without the public, he and other physicians have been “standing on a two-legged stool. . . . Missing is the visible, vocal citizen-consumer demand.”  Also missing, though, is a massive physician voice for change.  Here is an interesting study result:  in a 2013 survey of 1147 academic physicians more than 88 percent said they themselves would forgo high-intensity end of life treatment at the end of life. It may be unrealistic to expect physicians to take to the streets, but as the authors of a recent New England Journal of Medicine article wrote, “physicians should now practice what they profess, to ensure that their patients have the same options that they themselves, and a majority of Americans, would choose and that they honor patients’ preferences at the end of life” (Pizzo and Walker, NEJM, February 12, 2015).

We’ve heard that phrase before:  honoring patient’s preferences at the end of life.  Let’s hope this time we will, indeed, feel the earth move from the vibrations of so much call for change.

PDF for downloading:  News and Narratives of Interest-March2015