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Why does it matter that San Diego Hospice is closing?

Care for the most vulnerable in San Diego has been compromised:

The death of the largest academic hospice:

San Diego Hospice did not only serve patients in the county – through its training programs, it has built a foundation of palliative care experts who care for patients around the world.

Its US physician fellowship program was the largest and one of the most well-regarded training programs in the country.  Training up to twelve fellows a year, largely through the generous support of local donors, it will be remembered as a program that helped build the next generation of palliative care physician leaders in the US. To date, San Diego Hospice has graduated 78 physician fellows and 1 psychiatry nurse practitioner fellow.

Our specialty is already concerned about workforce challenges: having enough palliative care experts to meet the need of our patients, communities, hospitals and hospices.  The loss of this program will only add to this shortage.

Of immediate concern is how our palliative care community nationally will respond to the needs of current fellows and those who were anticipating going to San Diego in July?  Gary Buckholz, the fellowship director has been working diligently with the leadership at Scripps Health and San Diego Hospice to assure that the current fellows will finish their training and make the number of physician fellows trained 88.  I only hope that our government and Medicare supports the immediate growth of other palliative care fellowships around the country to make up for this imposed loss.

From a fellowship applicant: "I had only the vaguest of hunches that I was applying to an extraordinary institution, an epicenter of the coming and desperately needed renewal of medicine, when I submitted my application for a fellowship position. Now I know. I am therefore more eager than ever to have chance to work and learn at San Diego Hospice, to immerse myself in the waters of the quiet revolution that I surmise is taking place there in hopes of becoming part of it and helping to extend it to other quarters."

A call to arms

Save hospice!

Current Medicare regulations requiring the 6-month prognosis hamstring hospices and create an artificial barrier to allowing the sickest of our nation’s patients from accessing the most appropriate care in the most appropriate setting.  While the intention of these regulations is to avoid abuse and thus avoid cost, it actually is adding to the cost of care, by preventing patients from having the needed supports at home and often giving them little choice but to go to hospital.  Hospice care should not have such rigid entry requirements.  Entry should not be based on criteria that are not evidence based and that have not evolved with the science over the last 30+ years. Hospice should also be provided to patients in nursing homes – as an alternative to acute nursing home care.

Fund a fellow!

The workforce shortage of palliative care is worse than that of any other specialty.  Current fellowship positions will not meet the growing demand.  As your congresswoman to lead the effort to help build the workforce who can help lead the efforts of true healthcare reform – by assuring compassionate, high quality care, cost-effective care for the most sickly of our country’s patients.

Capture the legacy of San Diego Hospice and the Institute for Palliative Medicine

I remember walking into Charles von Gunten’s office in San Diego and seeing a photograph of him with Dame Cicely Saunders at St. Christopher’s hospice.  That photo needed no words to impart the significance of legacy.  I never met Dame Saunders, nor did I visit St. Christopher’s in its hay-day.  But those pictures and the stories I hear carry significance.

So my last request is this.  Share your stories and pictures here.  Let’s create a means to secure the history of San Diego Hospice.

From Dame Cicely and from all of us across the globe to the family of San Diego Hospice:
“You matter” (and always will)

For more Pallimed posts about hospice, click here
For more Pallimed posts about fellowship, click here
For more Pallimed posts by Suzana Makowski, click here.

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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:

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

  Harris 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

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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

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

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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?

RIP Avalanna. i love you
— Justin Bieber (@justinbieber) September 26, 2012

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

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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.

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

Resources:
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.

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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:

Blogs
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

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

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

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

I may have missed some that meet all four criteria above, so if you have others please email me tip@pallimed.org

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Last year an article by Thoonsen et al noted that early (they use the term 'proactive') palliative care "has hardly been addressed in the scientific literature."  In 2012 there have been over a dozen papers (by my very informal and quick count) on this topic in both specialty (palliative care and oncology) and general medical journals.  Both European and US-based journals are represented.  They are an eclectic group, including retrospective studies, clinical trials, case studies, secondary analyses, and reviews.  Some form of the term 'integration' (integrated, integrative) is commonly used as an adjective.  Others seen are proactive, as noted above; concurrent; early or early access; prospective; comprehensive; and holistic.  The focus varies:  specific diagnoses (breast and lung cancer) vs general "advanced cancer;" specific symptoms (peripheral neuropathy and depression); outcomes (costs and hospice referrals); and comparisons of symptom burden in various ethnic groups.  A few of the papers noted that integrated palliative care benefits healthcare providers as well as patients and families.  Most papers cited Temel et al's 2010 NEJM study comparing standard care of newly diagnosed metastatic nonsmall cell lung cancer with standard care plus palliative care starting at diagnosis.  Most also cited culture change, resources, widespread misunderstandings about palliatiuve care, and a small evidence base as barriers to integration.

Last month I attended the excellent Eighth Annual Chicago Supportive Oncology Conference.  The overall theme of the first day was integrating palliative care with standard/usual cancer treatment.  Highlights for me included:

• Deborah Dudgeon, MD, of Cancer Care Ontario (CCO) discussing the effort to both integrate palliative care and coordinate across multiple institutions.  A basic element is the use of computer kiosks in oncology waiting rooms in which patients enter their current symptom status using the Edmonton Symptom Assessment Scale.  Cancer Care Ontario has also developed symptom management and palliative care tools to encourage standardized approaches to care.
• Toby Campbell, MD, is a medical oncologist and palliative care physician.  Wearing his palliative care hat, he sees patients jointly with thoracic oncologists.
• Marie Bakitas, DNSc, of Norris Cotton Cancer Center (Dartmouth), discussed findings from the ENABLE series of studies of concurrent palliative care.  These studies have confirmed that early/concurrent palliative care does not shorten survival.  Among other things, they are also exploring what is in the "palliative care syringe:"  components and doses.
• Ralph Hauke, MD, of Nebraska Cancer Specialists, discussed the ASCO Leadership Development Program in Palliative Care, identifying palliative care as "an integral component of oncology care and is underutilized throughout the continuum of care."  He described a Palliative Care Service Model that uses some of the same approaches and tools as CCO.
• Tom Smith, MD, of Johns Hopkins, discussed the economics of integrated palliative care.  He advocated a palliative care approach as a way to "bend the cost curve" of exponentially increasing cancer care costs.
• Susan Block, MD of Dana Farber, discussed the poorly-designed electronic medical record as a barrier to quality care, using the example of searching for an advance directive in a record that wasn't designed to note it, store it, or track it.  She went on to describe how Dana Farber redesigned part of the medical record to support patient and family communication and consistent recording of advance care planning.

One thought that came to me is that palliative care programs that are in the early stages of development should have integration as a high policy and structural priority--much easier than retrofitting.

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Do you hear the drums in the distance?  They are beating louder and growing closer.

The New England Journal of Medicine published a brief Perspective, "Growing Pains for Medicare Hospice Benefit," on the current Federal funding dilemma of the increasing hospice budget (Open Access PDF).  David G Stevenson, PhD from Harvard Medical School, Department of Health Care Policy, gives a good summary of the financial foundation for the Medicare Hospice Benefit, and outlines the challenges with a longer national average length of stay, uncertain prognostication and trying to achieve budget neutral payment reform.  

Unfortunately the solutions proposed are quite complex and far from evolved. Accountable Care Organizations, concurrent care models, and bundled payments won’t be mainstream in time to fix the growing budget expenditure.  He rightly notes the shifting to a U-shaped curve of payment that increases payments at the beginning and end of hospice services may be somewhat helpful but that will not solve the entire issue.  I’m glad he points out the frustrating reliance on prognostication as the cornerstone for eligibility.  I’m a big fan of prognostication research, but it is clear we do not have the reliable prognostic tools as the Local Coverage Determination guidelines based on expert consensus from the NHPCO were proven to be broken in 1999 in a study by Fox that every pallaitive clinician should read.  (Open Access PDF - Thanks JAMA!).

He is tough but overall fair on the non-profit vs for-profit issue, but I think he paints with a broad brush.  Understandably, the nuances of but this conversation is better for a long form article. Make sure to give a listen to the podcast (15:22) where Stevenson goes into more detail and discusses competition on quality and transparency of choice, both of which will allow one to get past the straw-man arguments of profit status.  

I think we can all support one of his concluding statements:

beneficiaries must continue to have access to these specialized services and providers. It would be a Pyrrhic victory if greater efficiency in end-of-life care were achieved at the expense of needed patient care. Consequently, the ultimate verdict concerning hospice's integration into the broader health care system will be determined by the quality of end-of-life care that patients receive.

Fox, E. et al. (1999). Evaluation of Prognostic Criteria for Determining Hospice Eligibility in Patients With Advanced Lung, Heart, or Liver Disease JAMA: The Journal of the American Medical Association, 282 (17), 1638-1645 DOI: 10.1001/jama.282.17.1638 (OPEN ACCESS)

Stevenson, D. (2012). Growing Pains for the Medicare Hospice Benefit New England Journal of Medicine, 367 (18), 1683-1685 DOI: 10.1056/NEJMp1208465 (OPEN ACCESS) 

*Hopefully the picture doesn't confuse you young ones.  The TV family is from "Growing Pains." which shares the same title as the NEJM article. 
** Interesting tidbit - while looking up some pictures for the show, I did find this two-episode arc about Maggie's father coming for a visit and announcing he is dying, followed by an episode where Dr. Seaver takes Maggie away on a trip to deal with the death of her dad.  Anyone have Season 1 of Growing Pains on DVD? Teachable TV moment?

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*UPDATE 11/7/12 9:45am ET: Prop 2 was defeated 51-49%, so PAS/DWD will not be legal in the state of Massachusetts.*

Aren’t we all glad that is over!  With all the attention on the Presidential race, it was easy to lose sight of some key issues which could have a large impact for palliative care providers. It was surprising how little national attention was given to Massachusetts Prop 2 on legalizing physician-assisted suicide (PAS) in the run up to the election.  I was expecting this to even become part of the debates since the connection between health care and Massachusetts was obviously in play.  Part of my reluctance to blog on the topic in the past month may have been related to an irrational fear of ‘death panel’ language creeping up again on the national scene.

I expect Death With Dignity (DWD) ballot initiatives will continue in the future, building off the model established by medical marijuana initiatives in the past two decades.  Both PAS/DWD and medical marijuana legalization will impact how we as hospice and palliative care clinicians operate in states with a broad range of laws.  For instance, with increasing access to medical marijuana and medically hastened death, should we re-examine how we address these complex issues in fellowship training?  What about educating the new hospice medical director who does not have a depth of hospice experience yet?  How do we deal with conscience clause laws in various states?  Is there an incentive for HPM advocates to rail against PAS/DWD and choose the potentially self-serving argument of increasing funding for comprehensive hospice and palliative care services?  

Frankly I feel we as a field have not addressed these issues very well.  We have fought well to become established in modern medicine, and these topics are fraught with danger when discussed in the public arena.  Sure we may feel very confident when in a family meeting addressing a request for hastened death, but those intimate conversations do not lend themselves well to media sound bites and internet commentary.

This week I’ll explore some of these questions about hastened death and other current election results and how it affects our work.  Right now it looks as though Prop 2 will pass 51-49% with 93% precincts reporting.  The raw numbers show how close this is (as of 02:30am ET):

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Happy World Hospice and Palliative Care Day everyone!

Photo via Abaconda (cc) via Flickr

I just wanted to mark this day, October 13th, 2012, as events happened all over the world to recognize our field and bring attention to the patients and families we care for. Events occured internationally and in the United States.

On the international version of ehospice.com website, it reported that the WHO estimates that "24 million adults require palliative care at the end of life each year... Despite this growing need, 42% of countries still have no identified hospice and palliative care service, while 80% of people live in countries with little to no access to medication for the treatment of moderate to severe pain." There are so many patient who need us to advocate and care for them, so the events of today are exciting...

There was a run in Addis Abbaba, Ethiopia, a walkathon in Kerala, India, a human chain in Dhaka, Bangladesh, a flashmob in Cimislia, Moldova, a short film festival in Taipei, Taiwan, and many, many other concerts, celebrations, and workshops. There were also film screenings of the Life Before Death movie , which is something that is relative easy to do whereever you are, especially as they are discounting the DVD set 50% for the month of October.

I hope you had a good World Hospice and Palliative Care Day! Let's keep it going this month and all year round!