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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!

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Photo by Flick user Isidro Cea

While we often go to great lengths to explain what hospice and palliative care is about to families, patients and our peers, it is important to find the beauty in simplicity.  Haiku are a great exercise in editing and restraint in conveying your message with brevity and density.   On Twitter I happened to come across this haiku from an ER nurse

Helping people die.
Enemas and Foley caths.
Things I've been thanked for.

Jason Hautala is the ER nurse/author who recently published a book, Haiku Stat! compiling some of his best and most poignant work.  The article in Emergency Medicine News explains that this act of creation is really an avenue to channel the emotions, frustrations and difficulties he and his colleagues see in the ER.  It is nice to see self-care as a concern beyond palliative clinicians!  

So I challenged Pallimed followers on Twitter and Facebook to contribute some of their own haiku.  (Haikus for the uninitiated are short poems using a 5-7-5 syllable structure.) Here is a sample:

Never say 'no hope'
We help the sick shift their hopes
To hope in comfort

Palliation treats
Body, heart, mind and spirit
More than pain relief

End of life is like
Touching down on the tarmac
We guide smooth landings

- DF

Care for our elders
Supporting life until death
Learning all life long

-HDL

Like to talk to folks
Like listening even more?
Why I love hospice.

-CTS
Cared for by a team
Fam'ly and community
I go not alone

- VH

Cancer blossoming.
Lungs are red fields of poppies.
In the end Morphine.

-LC

Bleeding from his mouth
D'you want to be more sleepy?
I asked. He nodded

- KS

New diagnosis - scary
Chose palliative care
Relief for me and family.

- PH

Losses never lost
What we love: always with us
Becoming who we are

- KO

Eyes closed breathing slow
Family discussing will
I can still hear you!

-SL

I wish I was off.
Phone rings. I go, give my best.
A death: empathy.

I chose it, hospice:
Dying as part of work day.
I learn: Enjoy life.

- MFM


"Will I die tonight?".
A nurse pauses, remembering.
A dead reckoning.

- HB

Try this out as a team activity, and feel free to post your own in the comments, on twitter (#HPMHaiku), or on our Facebook page.  Maybe if we get enough, we could make a book too!

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The Institute of Medicine is searching for experts in the scientific, technical, and medical professions to be considered for a study committee titled “Committee on Transforming End-of-Life Care.” Nominations are due Monday, September 24, 2012.

The overall objective of the project is to advance policies to improve the care that individuals and families receive at the end of life through alignment with individual values and preferences and to stimulate a national conversation with individuals, families, and communities on improving the way we approach death. Specifically, the IOM committee will: review progress since the landmark 1997 IOM report Approaching Death: Improving Care at the End of Life, assess challenges and opportunities, and examine ways to integrate end-of-life care into a patient- and family-centered, team-based framework of health and community care; make recommendations about changes in public policy, health care financing, and clinical care to better align care with individual values and preferences and promote compassionate, high-quality, and cost-effective care at the end of life; and develop a communication strategy for promoting public information and engagement. 

A complete nomination will include uploading a current CV of the nominee (maximum size 500 kB).

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Whenever peers in your field are recognized for their hard work and dedication it is really reason for us all to celebrate the growth and increasing attention for the hospice and palliative care fields.  Of course one would expect one's own representative organizations like HPNA, NHPCO, CAPC, and AAHPM to participate in celebrations of achievement, but it is even more important when groups outside our own tribe begin to share in the accolades.

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