Live Well, Die Well: Thoughts On The Best Care Possible Through The End Of Life

We as a society are reluctant to discuss end-of-life issues—that was the premise of a presentation byIra Byock, a leading palliative care physician, at an October 29 forum in Spokane, Washington. Byock contends that Americans plan for every life milestone—birthdays, weddings, and graduations—but not for death.

Given this premise, it was quite challenging for the event planning team to anticipate just how many people would show up for a community conversation on a chilly fall evening. Despite a massive marketing effort, we had no idea if Spokane would turn out for a topic we, understandably, would all prefer to avoid. In the end, the 800 chairs set up at the Spokane Convention Center proved insufficient as the community came out in droves for this important conversation!

Each fall, Empire Health Foundation partners with Eastern Washington University, Providence Health Care, and Group Health to bring in a national speaker focused on some aspect of health. (Previous forums have featured health care reform expert T.R. Reid, and last year Dan Buettner shared his research on “Blue Zone” communities where residents tend to live into their 100s.)

This year’s focus on the best care possible through the end of life was a noted shift from the focus in 2014 on longevity. But, as Byock pointed out, he has yet to meet anyone able to overcome mortality. And, based on the number of hands still raised as we went well over the time allotted for questions and answers, this is a topic worth additional exploration in the future.

As director of Providence’s Institute for Human Caring, Byock, in his remarks, touched on a range of important issues, particularly the need to look beyond a strictly medical care focus to include personal care, because death itself is personal, not medical.

As someone whose life work involves communications, I was most struck by his focus on the importance of relationships and communication during the end-of-life stage.

Byock movingly described the importance of “community” and “family” at this end-of-life stage. We live in community and family, and our deaths should in turn include both. We are wired to be social beings.

Additionally, he keenly noted the importance of healing broken or hurt relationships. This is not only important for the person who is dying, but also for the surviving loved one. Byock spoke of the freeing power of four simple phrases: Please forgive me. I forgive you. Thank you. I love you. These are simple words conveying forgiveness, love, and gratitude. I plan to use them.

Communication is obviously important among families, but it is really important with what can be a large team of medical professionals caring for a loved one. Byock told forum attendees that most Americans say they would prefer to die at home, yet 70 percent instead pass away in a hospital or nursing home. Byock’s work at the institute is focused on improving communication between medical professionals and patients and their families so that patients can be clear about what kind of care they want through the end of life.

Part of this communication entails medical professionals being trained in not only how to approach these conversations, but also the importance of listening.

I wanted to jump up and applaud when Byock called for the need to improve medical education to better prepare medical professionals for end-of-life issues. It is high time our curricula are brought up to date to ensure that our professionals have the skills to communicate with (and listen to) patients to ensure they get the best care possible. As someone who resides in a region (Eastern Washington),where a new medical school is about to open, I hope we take our opportunity to “get it right” and produce these needed, highly skilled medical professionals.

The four sponsors of this event must now do some follow up. How do we continue these conversations? How can we influence our new medical school to ensure that it includes training on end-of-life care? How can we ensure our region is healthy and able to “live well,” but also to “die well?” This is a timely challenge and one our community is clearly hungry to continue discussing.

Editor’s Note: Related Reading:

“Medicare to Pay for End-of-Life Counseling for Terminally Ill,” by Jonathan LaPook, CBS News, November 2, 2015. This article mentions and has video of Amy Berman, a former registered nurse and senior program officer at the John A. Hartford Foundation.

“Physician Characteristics Strongly Predict Patient Enrollment In Hospice,” by Ziad Obermeyer of Harvard Medical School and colleagues, Health Affairs, June 2015 issue.

“Funders’ Support For Palliative And End-of-Life Care,” by Lee L. Prina, Health Affairs, GrantWatch column, February 2015 issue.

“Improving Care At The End Of Life: What Does It Take?” by Victoria (“Vicki”) Weisfeld, Doriane Miller, Rosemary Gibson, and Steven A. Schroeder, Health Affairs, GrantWatch section, November/December 2000 issue. This article discusses the Robert Wood Johnson Foundation’s work in end-of-life care,which has since concluded. Ira Byock is mentioned in this article.