End-of-Life Choice, Death with Dignity, Palliative Care and Counseling

Posts TaggedStephen Jenkinson

Death Phobia Prevails

Hospice and Palliative Care are “Not About Dying”

Last week’s “Heights of Compassion; Bridges to Choice” Conference in Chicago was a stunning success. Participants relished the opportunities to gather information and gain tools for personal empowerment and community activism. Several speakers spoke to our society’s reluctance to acknowledge death, and made the same point in different ways.

Teacher and author Stephen Jenkinson called our society “death phobic and grief illiterate,” with healthcare professionals among our most vigorous enablers. He accused palliative care and hospice professionals of predictably “catering” to death phobia whenever it shows up. I spoke of the marketing to seniors: what I called a “sex on the golf course” message.

As if on cue, articles appeared immediately following the conference to prove our point. On July 3rd the Associated Press reported on hospices disavowing their role in dealing with end-of-life experiences and losses.

Robin Stawasz, family services director at Southern Tier Hospice and Palliative Care in upstate New York told the reporter hospice isn’t about tending to the dying at all. No, “we come in and help people go golfing or go snowbird down to Florida, or go out to dinner several nights a week. We help them get to the casinos on weekends,” she said. “This is not getting ready to die. This is living — living now, living tomorrow, making the best possible life with what you have.”  An AARP blog reported gleefully that this is “just the beginning,” as hospices “diversify their services” in preparation for the eventual needs of aging boomers

One of our conference plenary sessions featured a dialogue between Rebecca Kirch from the American Cancer Society and the Center to Advance Palliative Care (CAPC), and Compassion & Choices board member David Muller. David chairs the Medical Education department at Mount Sinai School of Medicine and attends at the Hertzberg Palliative Care Institute. The topic was reframing the national conversation from “death and dying” to “quality of life.”

Rebecca’s organization wants more patients to access palliative care. They commissioned public opinion research to give the palliative care community a roadmap to communicate more effectively with consumers and policymakers on the benefits and future direction of their field. Unsurprisingly they found people shy away from being reminded of their mortality. Apparently the CAPC decided the best plan is to disavow any real association with, or focus on, the end of life. Her presentation described advantages of the new, upbeat goal of lifting the “quality of life” throughout an illness, from diagnosis to … well, to something “not death.”

David followed Rebecca’s talk with an astute analogy. He described a practice among some established physicians of rebuking insurance coverage and treating only patients who pay with cash. This alarming behavior, he said, was a growing trend in New York. These physicians built their practices on healthcare insurance payments, only to cast insurance contracts aside once they assembled sufficient loyal and wealthy patients. They owe their careers and livelihood to insurance, but outgrew their dependence on it.

David’s point is that palliative care as a medical specialty grew from hospice, which arose to meet the needs of patients facing the end of life. Hospice promised not to abandon these patients or torture them with fruitless treatments. They declared dying patients deserve care aimed at comfort, not cure. But now, as some doctors turn their backs on insurance, some hospices and palliative care leaders turn their backs on death and dying. They can’t be bothered with the arduous task of helping America overcoming its death phobia and grief illiteracy. How much easier to take the quick gratification and join the phobic chorus.

Twenty years ago there was no such thing as medical accreditation in palliative care. Death and dying brought palliative care to the dance of medical specialties. Now that palliative care doctors have learned the steps, they believe they deserve a more attractive dance partner. First palliative care left death standing against the wall.  Now hospice looks to do the same. Who will ask death to dance?

We at Compassion & Choices will, of course.  Because we have learned over and over that only death — only an acute awareness of our mortality — can teach us the joyful, authentic, intensely human dance of life.