Engage with Grace - Communicating End-of-Life Wishes

For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace [http://www.engagewithgrace.org/] – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.


The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post. They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones. The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition. We’ve supported each other’s efforts. And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” [http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande]– it is a work of art, and a must read.

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process, shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED [http://www.thehealthcareblog.com/the_health_care_blog/2010/10/engage-with-grace.html] for letting us share our story and our vision.

And of course, thank you to everyone who has taken this topic so seriously, and to all who have done so much to spread the word, including sharing The One Slide.

We share our thanks with you, and we ask that you share this slide with your family, friends, and followers. Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.


Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

(To learn more please go to http://www.engagewithgrace.org/

This post was written by Alexandra Drane and the Engage With Grace team. )

Enormous Variation in Late-Life Care Documented Once Again

The latest report from the Dartmouth Atlas Project concludes that the quality of end-of-life cancer care and use of hospice and palliative care services in a cancer patient's last month of life are enormously variable, depending on the community and the specific hospital or health system where the patient sought care. The mainstream media have picked up on this story (read here and here) as have  publications serving  the health care industry  (read here). Dale Lupu has an insightful post on Pallimed (read here) on the study's conclusions. Some newspapers have taken a closer look at study results within  their communities (read here for a report on Chicago).

A recent post on this blog (read here) commented on variation in late-life care (as identified in an earlier Dartmouth Atlas report), and how we should be looking at top decile performers as beacons whose practices should be emulated,  and another post (read here) wondered if a time will arrive when people evaluating communities in which to retire will  use a community's performance in providing late-life care as a factor in their final choice.
David Goodman, MD,   the director of the Center for Health Policy Research at the Dartmouth Institute for Health Policy and Clinical Practice and lead author of this study, put it best when he said , "Doctors and health systems need to take a look at themselves... to examine where they need to make their investments, and to make sure that they're fairly investing in what I think is one of the most undertreated (services) that we have in Medicare today, and that is undertreatment with palliative care and hospices services for those with advanced disease."

Among the striking examples of  variation, consider these:

•On average, 6% of cancer patients received chemotherapy during the last two weeks of life nationally, but in Olympia, WA it was 12.6% and in San Antonio, TX, 10.8, but only 3% in Worcester, MA and Baton Rouge, LA.

•Nationally, about 24% of Medicare patients with cancer were admitted to intensive care at least once during their last month of life. But variation across the country was seven-fold. In  Los Angeles and Miami it was 40.3%.  But in Mason City, Iowa, it was only 6%.

•Nationally, about 55% of cancer patients used hospice services in the last month of life. But again, variation was nearly fourfold across the country depending on hospital referral region. .

•About 9% of patients with end stage cancer nationally received life sustaining treatments, such as endotracheal intubation, feeding tube placement and cardiopulmonary resuscitation. But rates varied by more than six across the nation, from 18.2 in Manhattan and 17.5% in Los Angeles to 3.9% in Minneapolis.

Nancy Foster, vice president for quality and patient safety with the American Hospital Association, said studies like the Dartmouth Atlas Project's "help shine a light on the importance of end-of-life care." She went on to say,"Unfortunately, hospice care is not readily available in all parts of the United States." A curious comment, when one considers that use of hospice is below national average in some cities, regions, and states which have a relatively higher number of hospices per capita.

How much of this care is futile? Hard to say, of course. Living well has a different meaning for each patient, and it is the responsibility of clinicians and health care systems to help patients articulate their goals for living and for their medical care.

But we do know that there is a huge gap between patient preferences and the care they receive. In a post titled " Marginal Treatments at a High Emotional Cost from Families" on the KevinMD.com site, Dr. Marya Zilberberg wrote about her father's battle with advanced cancer and was left wondering  "what are we prolonging in many of the cases that we treat at the end of life — life or death?"
 
As Dale Lupu wrote in her post, perhaps this study will  be the impetus for performance improvement projects in some of these regions with poor results. I'm optimistic it will be.  Progress will be slow, however, if these performance improvement projects are isolated to individual hospitals and hospices - what are needed, as our (DAI Palliative Care Group) studies of exemplar palliative care communities have shown, are community-wide initiatives, or networks, whose "members" span settings of care and adopt "tools" like POLST to "spread the science" of HPM.

What a wonderful opportunity for HPM practitioners to assume leadership positions in the development of such networks. Much more on this subject to appear in future posts.

Palliative Care Grand Rounds - November MMX

Read here for the November edition of Palliative Care Grand Rounds, a monthly round-up of the best from the blogosphere about late-life care.