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Sunday, January 27, 2013

PPS Trajectories in Hospice

Functional status is all the rage in research these days, especially with the impending but often delayed roll out of ICD-10. Any seasoned hospice and palliative care (HPC) clinician will tell you how critical functional status is to understanding trajectories of patients as function has been part of our assessment for quite a long time.  Most of us know functional assessments through the more clinical acronyms of ADL (Activities of Daily Living) and the PPS (Palliative Performance Status).  On a whole HPC staff routinely use function as a key metric of prognostication, but we have not really had a lot of data that looked beyond PPS at admission.  

This week in the Journal of the American Geriatric Society, Pam Harris, Joan Teno, David Casarett and the CHOICE* group published Patterns of Functional Decline in Hospice Care, an important insight into the dynamic (or sometimes not quite so dynamic) change in functional status (as measured by the PPS) for patients who died on hospice.

The data all came from three hospices (KS/MO, PA, FL) using the Suncoast electronic medical record and looked at nearly 9,000 patients who died on hospice services and their PPS over the time they were admitted to hospice services.  The findings note three basic trajectories that emerged: cancer and stroke, cardiac and pulmonary, and debility and dementia:

Disease group PPS Decline

Cancer 8.44/week
Stroke 7.67/week
Pulmonary 5.02/week
Cardiac   4.53/week
Dementia 1.98/week
Debility 1.86/week
(Note: The above data are weighted average across groups and not indicative of any one patients average decline.  Thus the ability to readily apply to any individual patient is challenging to say the least.)

The data do help give us data to back up what many of us observe naturally in hospice, that patients with cancer have a short time on hospice marked by significant decline, and those with dementia and adult failure to thrive tend to have slower rates of decline and therefore may have longer lengths of stay.   

Two interesting findings did come up which could have an impact on how medical directors interpret hospice eligibility guidelines. First, of the 23% of patients who had a PPS recorded on the last day of life, 36% (weighted distribution) had a PPS of 40 or greater (mostly 40 or 50).  Those patients with a PPS of 40 or greater tended to be male, white and carry a cancer diagnosis.  Second, approximately 12 % of patients actually had an increase of PPS during this retrospective period, which is important to acknowledge because they still died.  This is good evidence that an improvement of PPS alone should not necessarily disqualify someone from hospice eligibility.  PPS decline is not a one-way street.

Some limitations of the study are important to realize before you make a drastic change in how you use functional assessment in determining eligibility.  The authors only analyzed patients who died during the 10 month follow-up period, but since you may try to apply this data prospectively instead of retrospectively as the study did, you will not know as you observe the decline of patients if they will die in the 10 month follow-up period or not.  It may be best for you to replicate this own study with your own team or own organization as a QAPI study (or even better publishable research!) so you can best understand how this applies to your unique case mix of hospice patients.  

I highly recommend you bring this study into your next IDG and discuss how it applies to your work in hospice and palliative care.  I’m excited to see more studies come from the CHOICE group and you can see them at the AAHPM meeting in New Orleans in March at one of the paper sessions.

* CHOICE = Coalition of Hospices to Investigate Comparitive Effectiveness

  ResearchBlogging.orgHarris P, Wong E, Farrington S, Craig TR, Harrold JK, Oldanie B, Teno JM, & Casarett DJ (2013). Patterns of Functional Decline in Hospice: What Can Individuals and Their Families Expect? Journal of the American Geriatrics Society PMID: 23347201

Photo Credit: normalityrelief via Compfight cc

Sunday, January 27, 2013 by Christian Sinclair ·

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.

Wednesday, January 16, 2013 by Christian Sinclair ·

The 2012 #HPM Year on Twitter

Ed. - Please welcome the first Pallimed post by Dr. Jeannette Ross (@RossJeanette), a geriatrics and palliative medicine specialist from San Antonio, TX.  

I recently read a webpost called 20 Twitter Stats From 2012 noting some interesting statistic about the amounts of tweets thru the 2012 year, the most retweeted tweet (Obama’s victory tweet), the most followed twitter account (@ladygaga with 32 million+), and others.

I was curious about what are the twitter statistics for our field as measured by the HPM hashtag. I went to the Symplur Healthcare Hasthtag Project and ran the #HPM 2012 analytics and did a little “research” of my own.

So here are the top 10 twitter stats of the #HPM hashtag in 2012:
  • There were 48,273 tweets sent using #HPM
  • 67,869,558 Impressions* resulted from the #hpm community tweets
  • 4,157 “Tweeople” participated in the HPM conversation
  • During 2012 #HPM generated an average of 5 Avg Tweets/Hour
  • The average #HPM participant posted 12 #hpm tweets
  • @jfclearywisc (Jim Cleary, MD) was the top HPM tweeter with 2206 tweets.
  • @ctsinclair (Christian Sinclair, MD) has 5,484 followers, which is the most followed #HPM account on Twitter. Ok that at least is HPM celebrity status! 
  • With his over 20K lifetime tweets he beats @ladygaga on tweets With that many followers it’s no surprise that @ctsinclair 1894 HPM tweets led to the most impressions with 10,371,544
  • The HPM tweets reached a 6594 tweet peak in March during the week of the @AAHPM meeting with March 9, 2012 generating 1156 HPM tweets on a single day
Ok that’s only 9 I wanted to find out which was the most tweeted HPM tweet but I don’t know how to figure that out. If only Justin Bieber had added the #HPM to his tweet in memory of a fan who died. They it would be 230,395 retweets. Any thoughts #HPM Tweeps?

If you want to understand more of how the statistics are generated and what they mean click here.  You can always join #hpm Tweetchat on Wednesday nights at 6p PT/9P ET to find a group of online advocates.  You don't even need a Twitter account to follow along.

Ok here is a 2013 New year resolution I can achieve. To Tweet more, and get others to tweet #HPM! You can always find me at @rossjeanette

*impressions: number of tweets per participant and multiplied with the number of followers

by Jeanette Ross ·

Sunday, January 6, 2013

Sendak: I cry a lot because they die and I can't stop them

I'm always struck at the end of a year how much we pay tribute in words and video to those who have died in the prior year.  Famous people always get the lion's share of the attention understandably as we focus on what they have achieved in their career.  Rarely do we get to hear from them in the months leading up to their death about their fears and dreams.

In September 2011, Maurice Sendak, noted children's author and illustrator was interviewed by Terry Gross for NPR's Fresh Air.  During this interview, Sendak is very upfront with his mortality and what matters most to him as he has grown older and his health begins to decline.  The whole interview is a gem, and I invite you all to sit down and find 45 minutes to be uninterrupted in listening to it.  But as I know it is the start of a new week in an ambitious new year, you may not have time for that in your priorities.  So at least take 5 minutes and watch this illustrated clip of the interview that was created by artist Christoph Niemann.

Niemann's listening to this inspired him to make this remixed version with a plaintive piano in the background, which has amazingly taken off to be viewed over 30,000 times on YouTube. Even the comments are pretty civil by YouTube standards!

This received a lot of comments and shares on the Pallimed Facebook page as well where I asked what quotes from the excerpt resonated with people most.  For me it was the statement:
"I cry a lot because I miss people.  I cry a lot because they die and I can't stop them.  They leave me and I love them more."
Gross notes his atheism is holding up while staring into the face of death.  Sendak was frank and open about his atheism and it is interesting to hear his views on afterlife since he does not believe in one.
But he believed in God, you see, and he believed in heaven, and he believed in hell. Goodness gracious, that must have made life much easier. It's harder for us nonbelievers.
As I have mentioned before it is interesting to see how many people in hospice and palliative care see a spiritual or religious calling to their work.  I have seen some people I have worked with in the past struggle to understand the dying thoughts of an atheist.  So when I saw this reworked illustrated short, I thought this would make a great educational project to bring to your next interdisciplinary team.  (If you do use it for team, please let us know how it goes!)

Sendak had many musings on his mortality and death and I will explore some of those more on a Pallimed Arts post next week.

NPR Interview Transcript

Photo Credits:
Where The Wild Things Are - Wikipedia Commons
YouTube Comment - Screencap

Edit 1/6/13: GeriPal has also posted on the NY Times Sendak video.

Sunday, January 6, 2013 by Christian Sinclair ·

The Best Free Hospice and Palliative Care Info for your Inbox

Are you drowning in information about hospice and palliative care?  It seems like every day there is a new aggregator of articles, highlights and tweets.

The criteria to the list below is:
1) The information must be primarily related to the clinical practice of hospice and/or palliative care,
2) The information must be able to land in one's inbox via email subscription,
3) The information must be available without paying for it directly or indirectly (membership), AND
3) The information should be posted with a regular frequency.

And here is the list in alphabetical order:

Hospice and Palliative Care Blog List

Palliative Care Journals (all issues/articles open access)
Supportive Oncology
BMC Palliative Care

Palliative Care Journals/Collections (Table of Contents/Article Alerts)
Current Opinion in Supportive and Palliative Care (TOC)
European Journal of Palliative Care (TOC)
JAMA Network - Palliative Care/End of Life Care (Article Alerts/Partial Open Access)
JAMA Network - Pain (Article Alerts/Partial Open Access)
Journal of Pain and Symptom Management (TOC)
Journal of Palliative Medicine (TOC/Partial Open Access)
Journal of Social Work in End of Life and Palliative Care (TOC/Partial Open Access)
Omega - Journal of Death and Dying (TOC)
Palliative and Supportive Care (TOC)
Palliative Medicine (TOC)
Supportive Care in Cancer (TOC)

Research Summaries
HospiLink by Hospiscript
Palliative Medicine Matters by Hospice Pharmacia

All Thing Palliative by Dr. Steven Prior
AAHPM Smart Briefs (open to non-members)
Media Watch by Barry Ashpole

ChiPPS (Children's Project on Palliative/Hospice Services) by NHPCO (open to non-members)
CAPC eNews

Photo Credit
Margot Trudell - "Drown" (via Flickr) - AttributionNoncommercialShare Alike Some rights reserved

I may have missed some that meet all four criteria above, so if you have others please email me

by Christian Sinclair ·

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