How the discussion on dying has changed over 40 years: A conversation with Nancy Berlinger

If you want a refresher on how far society has come on dealing with end-of-life care issues — and what issues are still to be resolved — then this retrospective article in the Feb 12 issue of the New England Journal of Medicine from experts at The Hastings Center is a great place to begin. It reviews the history of the end-of-life care movement in the U.S., takes a look at the integration of palliative care into health care delivery, discusses the still controversial “death with dignity” laws and ethical issues like removal of feeding and hydration tubes.

I recently spoke with co-author Nancy Berlinger, Ph.D., a research scholar at Hastings, about how the conversation on death and dying has changed over four decades.

Q: Why did you and your colleagues develop this retrospective for publication in a medical journal?

NB: It stemmed from a recent revision of The Hastings Center Guidelines [for Decisions on Life-Sustaining Treatment and Care Near the End of Life]. We updated that book to make it relevant for the contemporary physician and contemporary issues. A very senior physician we consulted with advised although the guidelines were good, doctors would pay more attention if the information appeared in a medical journal. We really thought hard about what we wanted the takeaway to be. By putting in in a legal retrospective we could send a message beyond “patients have rights” to “this work was necessary but insufficient.” We have to be very upfront about the limits of a legal approach in actually changing care.

As we were writing this we asked ourselves “how do we get end-of-life care into the conversations about care delivery and the health system? How do you make sure that the 2.5 million people who die in the U.S. every year are part of efforts to improve our health care system?” We wanted to take a look at what groups and individuals have done to actually bring this to public attention and ask, “where we are now” and “how fragile are these efforts?”

Q: Why is there so much reluctance on the part of so many health professionals to address this?

NB: There are still too many physicians, particularly those that don’t deal with this issue regularly, that have trouble discussing death and dying and palliative care with their patients. They’re reluctant; they’re uncomfortable. This gets end-of-life care into the professional conversation.

We see lots of ads from hospitals advertising their standards of excellence and their programs. None of them ever advertise their end of life care. Occasionally a hospice may do it, but it’s not in the nursing home or the hospital. It isn’t something you brag about. You don’t hear them say “we take great care of people when they’re dying.” As long as we don’t talk about mortality — and I don’t like to use the word denial — but it doesn’t rise to the top of the agenda.

You might recall that there was an effort to provide compensation to physicians for voluntary end of life discussions in the Affordable Care Act, but it was derailed by the “death panels.” Even though everyone agreed this was a good thing to do, it just got totally eliminated because it scared people.

Q: So how do we broaden the conversation?

NB: We have to take a look at who is involved — the community doctor, the hospitalist, the respiratory therapist — maybe they don’t deal with it every day, and may not be thought of as part of an end of life care team. But, they’re part of assuring quality with end of life care, or life-sustaining treatment, or palliative care for their patients. I call them the “non self-identifiers.”

They are involved in good end of life care but do not think of themselves as part of this.

Whatever we do has to be nested inside of a systemic reform. If you look back at last year’s [Institute of Medicine} Dying in America report, it’s clear that financial incentives are very misaligned with what people need, what they want, what would be medically appropriate. This is a very complex issue – it can’t be undone by a patient, or by an individual doctor or nurse. This has to be the focus of very high-level attention.

Q: Does CMS, and by extension, Congress, need to overhaul its guidelines and payment structure?

NB: You have to look at these things in context – Medicare funds most end-of-life care and hospice. What Medicare and Medicaid are doing absolutely affects what is going on in practice. So you’re looking at the system level. At the same time, patients and clinicians today cannot wait on system reform. It’s very important to provide clear guidance and support in the clinical setting.

Q: What should journalists be focusing on?

NB: Even if they don’t cover the deep medical end of things, they can still ask questions in the context of health and wellness, such as:

  • How much power does a sick person have?
  • How much power does a really stressed out family have?
  • How much power does a doctor, seeing X number of patients, really have?
  • And, what still do we want to try to help these people to do? To understand we’re all connected in these efforts.

My conversation with Nancy Berlinger continues next week. In the meantime, be sure to read (or re-read) Lisa Krieger’s award-winning series The Cost of Dying (and her article about writing it) and Paula Span’s recent New York Times piece on the tough choices that must be made for those with advanced dementias. My blog post, How to talk about death and dying, has some important tips for journalists. And, check out the presentations from “Separating fact from fiction: End-of-life decisions in the United States” from Health Journalism 2014. Berlinger was one of the experts featured in this AHCJ webcast about end-of-life care in 2013.

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  1. Pingback: Talking about end of life and palliative care: Part two of a conversation with Nancy Berlinger | Association of Health Care Journalists

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