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Wednesday, October 30, 2013

NHPCO Releases 2013 Facts and Figures for Hospice Care in America

Every Fall the National Hospice and Palliative CareOrganization releases the Hospice Facts and Figures report, just in time for National Hospice and Palliative Care Month. The format overall is relatively the same with some minor differences.  Overall, the same trends we have seen over the past few years have kept going in the same direction with the same velocity:
  • Increased # of patients served* (1.5M)
  • Increasing average length of service (71.8d)
  • Decreased median length of service (18.7d)
  • Slightly higher percentage of elderly patients served
  • Higher diversity of patients served
  • Increasing percentage of non-cancer diagnosis led by debility and dementia
  • Increasing number of hospice programs (5,500)
  • Increasing percentage of for-profit hospice programs
  • Increase in Inpatient Hospice (GIP) days
  • Declining satisfaction rates (although still high) 
*NHPCO revised some of their past estimates of total patients served and is currently using a line graph with confidence intervals instead of a bar graph with a single number.  At the end they have an Appendix which explains the data sources and the estimates.

I find this to be a very helpful guide to understanding end of life care in the United States and have shared and discussed it in IDG and with organizational leadership.  It serves as a helpful benchmark for a hospice program (in addition to the annual PEPPER reports) compared to national standards. It is also extremely helpful for presentations as you always want to make sure you are using the most up to date statistics on hospice care.  How do you use the NHPCO Facts and Figures?

I always thought it would be good to have a nice public spreadsheet with all the data from the past NHPCO Facts and Figures. (Although the report is copyrighted which we respect, it seems like a good crowdsourcing or Open Data project.) To save you from having to search for past PDFs I have listed all the ones I am familiar with here. Download them before the links are broken!  (If anyone has them from earlier please send them to me or add the link in the comments)

Wednesday, October 30, 2013 by Christian Sinclair ·

Thursday, October 24, 2013

"What would you do if it were your kid?" - An Invitation for Empathy

(Ed. - Please welcome Jennifer Linebarger, MD, MPH, FAAP to Pallimed.  Jennifer joins us and will be helping beef up our pediatrics focus here at Pallimed. We are thrilled to have her! - Sinclair)

I had just begun reading Dr. Danielle Ofri's latest book, "What Doctors Feel: How Emotions Affect the Practice of Medicine", when I opened The New England Journal of Medicine to find David Korones' essay "What would you do if it were your kid?" As he points out, nearly all of us have been asked, have heard this "plea to share with them, as a partner, the heavy burden of decision making." And nearly all of us have squirmed in our seats a little each time.

I still remember the child in the ICU, sedated and on a ventilator as her parents waited for the fungus in her lungs to clear. The note on her door said, “Docs, if ‘Plan A’ didn’t work, the alphabet has 25 more letters! So stay cool.” Yet, the infection was persistent, and her parents were asked to decide – continue as is, perform surgery to remove the fungal ball, or to withdraw the ventilator support and keep her comfortable as she died. The whole team gathered with the parents – the ICU doc, the BMT primary, the infectious disease specialist, the cardiothoracic surgeon, and me, the palliative care doc. The options were presented. The table fell silent as the parents processed the decision before them. Then the father asked, “What would you do?” And after a few furtive glances, one-by-one every provider around that table shared their opinion.

There was not a unanimous response from the providers at the table. But everyone sat with the parents as they faced a heart-wrenching decision. Two years after her death, her parents sat before a group of second year residents and reflected on that family meeting, and on the empathy they felt. It buoys them on their waves of grief to this day.

While the word "empathy" does not appear in Korones’ essay, I think it is at the heart of everything he says. Perhaps it is because I was reading Ofri’s book, and on page 48 she explains,
“Empathy is a cognition, a thought process that allows you to understand the patient’s feelings while not necessarily feeling them yourself… and the empathic doctor needs to be able to clearly communicate that understanding” (p48).
When a patient or a family member asks, “What would you do?”, they are inviting empathy.

ResearchBlogging.org1. Korones DN (2013). What would you do if it were your kid? The New England Journal of Medicine, 369 (14), 1291-3 PMID: 24088090

2. Meyer EC, Lamiani G, Foer MR, Truog RD (2012). "What would you do if this were your child?": practitioners' responses during enacted conversations in the United States. Pediatric Critical Care Medicine 13 (6) PMID: 23034458

Thursday, October 24, 2013 by Jenni Linebarger ·

Friday, October 11, 2013

World Hospice and Palliative Care Day 2013: Palliative care as a human right

This Saturday October 12th, 2013 is World Hospice and Palliative Care Day ( and if you are in the United States like me (and most Pallimed readers), the majority (if not all) of your palliative care advocacy efforts are local, regional or national.  Outside of the UK, Australia or Canada, I'll admit to being fairly naive for most of my career when it comes to the palliative care access issues in the rest of the world.  I've explored and participated somewhat in the global health issues of symptom control and pain access, but the local and national needs always seemed to take precedence.  

In the last few months, a few people have done a lot to help open my eyes to the importance of understanding palliative care through the eyes of the world. The efforts of Dr. Jim Cleary (@jfclearywisc) on Twitter (#hpmglobal) and leading the Pain and Policy Studies Group, in addition to Dr. Holly Yang (@hollyby) and Dr. Frank Ferris and their international work, have helped illuminate the challenges faced in other countries who are not as open when it comes to opioid access, or palliative care training.  

So for World Hospice and Palliative Care Day tomorrow I encourage you to increase your awareness about global palliative care issues the whole year through.  But since awareness is real only the first step, I would also ask that you sign The Prague Charter in an effort to make governments recognize palliative care as a human right.  It is already sponsored by:
  • European Association for Palliative Care (EAPC)
  • International Association for Palliative Care (IAHPC)
  • Worldwide Palliative Care Alliance (WPCA) and
  • Human Rights Watch (HRW)

Background information on the charter can be found on the European Association for Palliative Care website.  Basically it asks government to support access to medications, palliative care training, public health policies that support patient and families in times of serious illness and around death, and finally integration of palliative care into the healthcare system continuum.

Once you sign it, share it and when you share it, write why it is important to you.  Here is what I added to my signature on The Prague Charter:
As a palliative care doctor, I have seen suffering damage people and families, but I have also seen the ability for skilled clinicians taught the basics of palliative care, who are able to relieve that suffering.  In that act of relief, those clinicians also create a healing process for patients and families even in the face of serious illness.  With access to critical pain and symptom medications and the proper education more clinicians can make a true difference in people's lives around the world.

Friday, October 11, 2013 by Christian Sinclair ·

Friday, October 4, 2013

God doesn't give you more than you can handle: helpful or unhelpful?

In the face of a crisis, many people are challenged to find constructive and meaningful ways to engage in conversation and so often they fall back on platitudes. Simple, hopeful, semi-philosophical phrases we have heard in many other situations may sound important to the speaker, but the receiver finds them meaningless and tone deaf. I'm sure you have heard many of these uttered to patients by well-meaning family friends, and even health care professionals:

"This too shall pass."
"Stay strong."
"Think positively."
"I'm sure it will be OK."
"It is what it is."
"God won't give you more than you can handle." 
Many in that list are generic, perhaps based off of some quasi-scientific research that a good attitude means you can beat your colon cancer.  But the last one is particularly interesting because it calls upon spiritual beliefs, which can be a strong source of support for the critically ill. I have heard a few chaplains who understand the origin and context of this phrase, criticize the crude application in times of sickness.  I also have worked with chaplains who utilize this phrase to explore and discuss a patient's own religious values. When I hear it in a clinical context, I'm not sure I have explored the deeper meaning, so I was very interested to read this frank rebuttal of "God won't give you more than you can handle" by Pastor Nate Pyle.
"Limp, anemic sentiments will not stand in the face of a world that is not as it should be."
Pyle explains that this phrase is often sourced to the Bible but the original statement is about temptation not suffering.  I think this is a great post to bring to team and discuss how we as professionals who see the intersection of suffering and spirituality everyday deal with statements like this. I posted the article earlier this week to the Pallimed Facebook page, and it garnered a lot of responses.  Here is one that I think many in palliative care will agree with:
Call it what you will, but someone people hang on to this for their hope and sanity. Even though I agree with this blog, even his blatant use of calling it what it is, sometimes to "correct" those (in the moment) who are holding on to this falsity as their hope and sanity, it is equivalent to pulling the chair out from under them.
When you hear, "God doesn't give you more than you can handle," how do you respond?

H/T to Rick Bauer (@nvrflycoach) for posting the original blog to Twitter
Photo Credit: Not attributable after using Tin Eye Reverse Image Search

Friday, October 4, 2013 by Christian Sinclair ·

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