By Jennifer Moore Ballentine
My heart sank when I saw the notice of Aretha Franklin’s admission to hospice care. Not just because the news meant we would soon be losing one of the most profoundly talented and influential American cultural icons, but because I feared that “soon” would be much sooner than it should be. Three days, as it turned out. Again.
As much as we need celebrities and respected persons to announce their decision to seek hospice or palliative care, the gap between “enters hospice care” and “dies after a battle with X” is too often way too short. Consider the following:
- Harmon Killebrew, 4 days
- Lari White, 3 days
- Joan Mondale, 1 day
- B.B. King, 10 days
- George McGovern, 5 days
- Jarrod Lyle, 6 days
- Barbara Bush, 2 days
With luminaries like these passing in days, and the median length of stay in hospice just a little over 3 weeks, the public could be forgiven for thinking that “hospice is where you go to die.”
There are outliers, of course—Joey Feek’s exquisitely documented 4 months in hospice seems like an eternity. And then there was Art Buchwald, who famously “failed” hospice after a 5-month stay he called “the best time of [his] life” during which he continued to write a weekly column, entertained friends, and wrote a book, finally dying of kidney failure months later. But somehow these stories sink, and the notion that hospice — and, increasingly, palliative care — is nearly a drive-by service gets reinforced.
For decades, hospice and palliative care providers have struggled against this narrative, trying to reframe “nothing more we can do” as “living as well as you can for as long as you can” or “comfort care only” as “the best care possible.” Too often, we all hear instead, “Palliative? You mean hospice, don’t you?” and “Hospice? That’s where they pump you full of morphine and you die.”
Worse, still, we hear this both from our patients and our healthcare colleagues. Getting referrals remains one of the steepest challenges in the success of palliative care services. Remember, palliative care is person-centered care designed to anticipate, prevent and manage suffering for patients with serious illness, from the time of diagnosis onward, alongside curative treatment or without it. Hospice is a type of palliative care available to people with a life expectancy of six months or less, who are no longer seeking treatment.
What makes a physician more or less likely to refer? A study in the AMA Journal of Ethics found that “family and internal medicine practitioners were twice as likely to refer [to palliative care or hospice] frequently than were specialty and emergency medicine practitioners, and those who reported comfort with end-of-life care discussions were five times as likely to refer frequently than those who did not.”
Other studies (published in Palliative Medicine and Health Affairs) have identified physicians’ familiarity with palliative or hospice care—personal or through their patients—as key. Another critical factor, of course, is receptivity to difficult conversations and palliative approaches by the patients and families themselves.
These studies and many others recommend education, education, and more education—of providers and the public—as at least one part of the answer to more timely access to palliative care.
Music to our ears. This, after all, is what we do at the California State University Institute for Palliative Care, and what we offer to the field: comprehensive as well as topic-focused education in all things palliative care, for specialists as well as primary care and non-specialist physicians, nurses, social workers, chaplains, care managers, and more.
It is particularly gratifying, given all this, that the House of Representatives has recognized the importance of palliative care and hospice education, by passing the Palliative Care and Hospice Education and Training Act (PCHETA). First introduced in 2012, this bill has slowly gained sponsors, momentum, and support year after year, culminating in passage by the House and likely passage in the Senate before next term.
If enacted, PCHETA promises to make available $49 million a year for four years in grants and contracts to support palliative care and hospice education in pre-professional schools, residencies and fellowships, and continuing education settings, as well as creating a national public awareness campaign and directing additional NIH funds toward palliative care research. This could be a game-changer for palliative care education. We’re watching with every digit crossed!
Jennifer Moore Ballentine is the executive director of the CSU Institute for Palliative Care, which is based at Cal State San Marcos and provides online continuing education in palliative care for health professionals. This commentary originally appeared in the Aug. 24 edition of the San Diego Union-Tribune.
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