Wednesday, January 16, 2013

Committee on Transforming End of Life Care is Incomplete

In September 2012, the Institute of Medicine made a call for experts in the scientific, technical and medical professions to be considered for a "Committee on Transforming End of Life Care."  This effort is a follow-up to the important 1997 IOM report Approaching Death: Improving Care at the End of Life. This week they released the preliminary committee members for a short period of comment.  Here is the list of members:
  • Philip A. Pizzo, MD (Co-Chair), Stanford University School of Medicine
  • Mr. David M. Walker, CPA (Co-Chair), Comeback America Initiative
  • Patricia Bomba, MD, FACP, Blue Cross and Blue Shield Association
  • Eduardo Bruera, MD The University of Texas MD Anderson Cancer Center
  • Rev. Charles J. Fahey, MSW, MDiv, Fordham University
  • Pamela S. Hinds, PhD, RN, FAAN, Children's National Medical Center
  • Dr. Karla F.C. Holloway, PhD, MLS, MA, Duke University
  • Ms. Naomi Karp, JD, Consumer Financial Protection Bureau
  • Jean S. Kutner, MD, MSPH, University of Denver
  • Bernard Lo, MD, University of California, San Francisco
  • Salimah Meghani, PhD, MBE, RN, FAAN, University of Pennsylvania, School of Nursing
  • Diane Meier, MD Mount Sinai School of Medicine
  • William D. Novelli, MA Georgetown University
  • Stephen G. Pauker, MD Tufts University School of Medicine
  • Ms. Judith R. Peres, Altarum Institute
  • Mr. Leonard D. Schaeffer University of Southern California
  • W. June Simmons, Partners in Care Foundation
  • Joan Teno, MD, MS, Brown University School of Medicine
  • Fernando Torres-Gil, PhD, MSW, University of California, Los Angeles
  • James Tulsky, MD, Duke University
You will surely recognize many names from this list. They have assembled a fantastic panel of committee members with many different experiences.  We should all be very excited to see what great combination of stories, data, and leadership emerge from this endeavor.  There are people on this list with backgrounds in: Public Health, Public relations, Pediatrics, HIV, Cancer, Education, Ethics, Research. Psychiatry, Decision Making, Cost/Benefit Research, Health Policy, Cardiology, Geriatrics, Internal Medicine, Communication, International Health Care, Epidemiology, Catholocism, Aging, Pain, Minority Populations, Women's Studies, African-American Studies, Disability, Quality Improvement, Accounting, POLST, and Medicare/Medicaid.

Yet in looking through this list, I kept feeling something was missing. (No, it wasn't the fact my name did not make the list, although for full disclosure I did work with peers in submitting my name for the list.)  So I read their bios in more detail to examine more closely what was leaving me unsettled.  

The first thing which stood out to me was the lack of hospice representation from leaders in our field. Only Dr. Teno's bio lists any current affiliation with a hospice organization.  To me it appears the emphasis is weighted heavily towards academic palliative care.

Don't get me wrong, I love academic palliative care.  Heck it is one of the main reasons this blog even exists.  But if this committee is going to tackle the complex task of "Transforming End of Life Care," I think they would want need a few representatives from the part of the health care system which provides care in 45% of all US deaths (1.1M - NHPCO 2011 data).  A quick snapshot of potential candidates is the list of AAHPM past presidents: Cooney, Crossno, Muir, Twaddle to name just a few.  I'm sure there are other great candidates out there as well.  

The second thing which was noticeable was the lack of any fellowship trained physicians in hospice and palliative care.  'But Christian, aren't we still in a very young age for fellowships?', one may ask. Pish posh, there are many of my peers and those who trained before me who have accomplished much in a short time: Tara Friedman, Gary Buckholz, Holly Yang, Drew Rosielle, Suzana Makowski, Eric Widera, Alex Smith, David Wensel, Gordon Wood, we can keep going.  Having a physician who has gone through  a fellowship brings experiential knowledge from living through the educational process.  Plus, it may not be a bad idea to have a few younger professionals to prepare for larger roles and succession to these many great leaders.

And lastly, it was pretty obvious from looking at the academic affiliations, we were dealing with city slickers from the coasts for the most part.  A summary of the lack of geographic diversity:
  • 6 from California
  • 4 from Washington DC
  • 3 from New York
  • 2 from North Carolina
  • 1 each from Colorado, Connecticut, Massachusetts, Pennsylvania, Rhode Island, Texas
Sure I may be a little bit sensitive being from 'flyover country' but of all our great talent in the US I'm pretty sure it is not all on the coasts and in the cities. What about Carolyn Nystrom, RN from Ketchum, ID, winner of the 2012 Sojourns Award, who runs a community based, freestanding, non-Medicare, full service hospice to 2644 square miles in rural Idaho? She might have some ideas on transforming end of life care.

So these are just a few things that I think are missing from the IOM Committee on Transforming End of Life Care.  But did I just write all of this to complain? No.
"Complain about the way other people make software by making better software." - Andre Torrez
We all have a chance to give our voice, which is a wonderful gift from the IOM.  So if any of these issues resonate with you, give feedback! At the end of the committee list page is a Feedback button, and you have until the 30th of January to submit. If you see other omissions you think are important please share.

In conclusion, I'm really glad the IOM is revisiting this issue after almost two decades.  I have great confidence in the expertise of the committee so far, and expect great outcomes from the process.  But if you think there needs to be a little bit more diversity now is your chance to give input.

Reference: Summary table of different characteristics of the panel via Google Docs
*Edit* 1/17/2012 - Fixed errant link to IOM Feedback page.

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