Thursday, November 29, 2012

Integrated palliative care is suddenly all the rage

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.

Thursday, November 29, 2012 by Thomas Quinn, APRN ·

Wednesday, November 7, 2012

Increased Focus on Hospice Reform

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.
ResearchBlogging.orgFox, 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?

Wednesday, November 7, 2012 by Christian Sinclair ·

Voting on Physician Assisted Suicide

*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):





Proposition 2 - Massachusetts
A Yes Vote would enact the proposed law allowing a physician licensed in Massachusetts to prescribe medication, at the request of a terminally-ill patient meeting certain conditions, to end that person’s life.
Official Ballot Language
Pro - YesonDignity.com
Con - Committee Against Physician Assisted Suicide

Key Editorials
Physician-Assisted Suicide is Not Progressive - Ira Byock - (The Atlantic - 2012)
Suicide by Choice? Not So Fast. - Ben Mattlin - (NY Times 2012)
Letters to the Editor to Suicide by Choice? Not so Fast. (NY Times 2012)
Four Myths About Doctor-Assisted Suicide - Ezekiel Emanuel (NY Times 2012)
Whose Right to Die? - Ezekiel Emanuel (The Atlantic -1997)

by Christian Sinclair ·

Sunday, October 14, 2012

World Hospice and Palliative Care Day 2012

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!


Sunday, October 14, 2012 by Holly Yang, MD ·

Sunday, September 23, 2012

Hospice and Palliative Haiku

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!

Sunday, September 23, 2012 by Christian Sinclair ·

Nominations to the IOM Committee on Transforming End-of-Life Care

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).



by Brian McMichael, M.D. ·

Wednesday, September 19, 2012

2012 Sojourns Awards from The Cambia Health Foundation

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.


The Cambia Health Foundation is holding the 2012 Sojourns Awards today in Seattle, WA to recognize five clinicians holding the flag for quality of life and symptom control for those with serious illness. The Sojourns Award was created in 2007 to recognize palliative care regional leaders in Washington, Oregon, Idaho and Utah.  As luck would have it I was already planning to be in Seattle today, and the Cambia Health Foundation invited me to the Awards ceremony to meet the award recipients.   Also attending the ceremony is the journalist Ellen Goodman, who has recently co-founded The Conversation Project, which encourages people to talk about their end-of-life care wishes.  She will be giving the keynote, presumably about her new project, which I also plan on featuring here soon.

 I'm hoping to be able to interview all of the awardees and tell you more about their projects and the particular challenges and rewards they have encountered. You can read more about each of their work with the links below if you are curious.    

For more live coverage you can follow me on Twitter at @ctsinclair or the hashtag #SojournsAwards.  I believe Eric Widera from GeriPal will also be at the conference so they might have some coverage as well. I'll be testing out some audio recordings as well for possible future podcasting.  I'll let you know how that experiment goes as well. 

(Disclaimer: The Cambia Health Foundation will be covering one night hotel stay as part of the invitation to blog and tweet about the event)

Wednesday, September 19, 2012 by Christian Sinclair ·

Wednesday, September 12, 2012

TEDMED: The 20 Great Challenges of Health and Medicine


I wanted to bring to the attention of the Pallimed community that TEDMED is sponsoring a series of discussions on a new interactive minisite: The 20 Great Challenges of Health and Medicine. The purpose of the series is to elicit multiple perspectives and interaction with thought leaders on some of the large, complex problems in health in medicine that effect us all.

One of the first 6 online discussions active right now is on The Caregiver Crisis

"Coming soon" will be an online discussion on Coming to Grips with End-of-Life Care

It is interesting to note that so far the only TEDMED presentation that has been explicitly about EOL decision-making is this one by Alexandra Drane, the driving force behind Engage With Grace. Perhaps someone out there in Pallimed-land has a big idea to pitch.

Cheers!

Wednesday, September 12, 2012 by Brian McMichael, M.D. ·

A New Day for Pallimed

Hi remember us?  Just your friendly neighborhood hospice and palliative medicine blog.  Yes we have been quiet for almost three months.  And even before that we were slowing down in our posts.  But I think that needs to change. And it will start to change now.

Pallimed has been a labor of love since its inception.  No ad revenue, no grants, no donations, just some after hours writing on topics which we the writers thought were interesting.  We were part of a very early growth in specialty medicine blogs and became a pretty strong voice.  But then the time to write posts seemed to disappear, it was easier to just tweet a link, and many other good informational sources started appearing.  We have heard many stories from all of you about how seeing these posts made you feel more comfortable to start your own blog, or start to tweet and share information about hospice and palliative care far beyond the walls of your organization.

Many times over the past few months I have written drafts to post, only to save them, and feeling they were not up to par.  A severe case of writer's block is what I finally self-diagnosed. The block is a vicious beast.  But today is a new day.

This new day is inspired by a sign I saw while driving down the street in Chicago on a recent visit.  Now if any of you know me, I am not one to think much of superstition or amazing coincidences, but I would describe my understanding of the human mind as a meaning making machine. So when I saw this sign I was overcome with a rush of meaning.

Yes, that is the 'P' of Pallimed in the serif font known as Algerian. I had never seen it in other locations, (even though apparently it can be seen in many places, and inspires a deep loathing.)  What I see with this sign is not the classic 'No Parking Any Time' but rather 'No Pallimed Any Time.'

And I did not like the feeling when I saw it.  So now in this new day, you will start to see more posts from me, and I will start to spur the old motley crew of bloggers who have written some fantastic posts in the past.  I have thoughts for a redesign but hiring a professional coder to do the work so it has a much cleaner and intuitive feel, maybe even a new logo to get rid of that loathsome Algerian.  So if you want to be part of the new day, keep reading, commenting, sharing, and if you really want to contribute (no blogging experience necessary) email me now at ctsinclair@gmail.com

More to come on the new day...

by Christian Sinclair ·

Wednesday, June 27, 2012

ACA, Supreme Court, Politics and Hospice

I love prognostication as a research topic and a clinical skill, and I have been thinking a lot about the future for hospice as it relates to the impending decision by SCOTUS on the Affordable Care Act.  Most people in hospice are aware of the new Medicare rule for Face to Face (F2F) visits that started in January 2011 for patients on service beyond the second benefit period (usually 180 days.)  Many of you would be surprised to know the new rule was part of the Affordable Care Act.  So one thought crossed my mind as I heard talking heads drone on about the decision: If ACA is struck down in its entirety will the Face to Face provision go away?

If the ACA is deemed unconstitutional as a whole, F2F may disappear for a while, but my guess is F2F would likely come back in some form as a reasonable check on long stay patients on the Medicare Hospice Benefit.  While F2F did provide a significant administrative and labor workload without any reimbursement, in one way I have come to really appreciate the F2F requirement.  In getting doctors and nurse practitioners out in the field with the rest of the team, I have witnessed a better approach to patient care with the actual experience of seeing a patient beyond the chart information.  Yes the F2F can trip up clinicians and organizations if you are not familiar with the guidelines but I believe most hospice organizations have managed to adopt to this task without significant problems.

The ACA has other changes in store for hospice as well, most notably the October 1, 2013 deadline for CMS to revise the methodology for hospice payments.  The plan is for a potential cost savings to the government of $100 million through 2019.  And if you are not particularly gifted with budget and finance, that cost savings is made up by reduced payment to hospices for providing the same services.

All this makes it critical that we as a block of clinicians prepare for the upcoming election, because if past results are any indication, end of life care may likely be a talking point. So you should know your talking points, demonstrate the evidence for your quality care, and collect stories that reflect your mission.  In addition, reach out to your organizational leadership, and our professional organizations (AAHPM, NHPCO, HPNA, etc.) to see what opportunities exist for becoming a strong chorus for high quality, sustainable, ethical, compassionate hospice and palliative care.

Wednesday, June 27, 2012 by Christian Sinclair ·

Accurate Portrayal of a Hospice Nurse?

Is it just me or is it really hard to portray what hospice nurses do to the rest of the world?  I recall seeing this Johnson and Johnson public service announcement last year, but was recently reminded about it during this week's #hpm Tweetchat.  Maybe you have seen it on TV, but for those of you who have not seen it yet here you go: (email subscribers click the link to this story to go to the website)



 A transcript of the PSA for those who have YouTube blocked from work:

I'm a hospice nurse. Berta Olson is my patient. I spend long hours with her, checking her heart rate, administering her medication, and just making her comfortable. One night Berta told me about a tradition in Denmark. When a person dies, she said, someone must open the window so the soul can depart. I smiled and squeezed her hand. "Not tonight, Berta. Not tonight." (We see the nurse close the window.)

I have watched it 10 or times before writing up this post. And my thoughts on it have changed the more I watch it.

Some background on the ad campaign from Johnson and Johnson is important to understand the context. Since 2002 J and J has been supporting nursing education through the Campaign for Nursing's Future.  The site www.discovernursing.com has good information on how to navigate the pathway to nursing.  The Hospice Nurse page features a pretty accurate description about focus, job characteristics, and route to becoming a Certified Hospice and Palliative Nurse. Three cheers for CHPN's! There is an opportunity so submit your story and of the 211 stories I could not find a single hospice nurse.  (Yes I clicked through them all.)

What is fascinating to me is the potential schism created among hospice supporters.  What is driving the varied views is really an optical illusion.  As you watch this ad your mind fills in the blanks based on your own experiences.  On one hand a caring relationship between nurse and patient is portrayed with a focus on life review and traditions.  To some people it might seem the nurses words heal in that Berta might be given hope that she is not dying tonight. Maybe Berta shared stories of regret she had not mended fences and was hopeful at an opportunity in the near future to do so.  In this situation the nurse's words give hope Berta will still have time to fulfill her last tasks.

But if you identify with being a hospice apologist, always having to defend hospice and dispel myths, then you might get a bit upset with this video because it reinforces the classic Western medical view of death as a defeat of the human spirit and vitality.  Some have commented on the video noting that by closing the window the nurse is 'trapping the soul' of the patient, which is getting a bit absurd since the patient is clearly not actively dying.

There is a place where saying "Not tonight Berta" works but I think the better reply for any hospice clinician is one grounded in curiosity: about the tradition, about Berta's feelings, about her understanding of her current prognosis, and about her hopes and fears. While it makes for a great clinical visit, it makes for lousy TV, especially in figuring out how to portray all of the above in less than 30 seconds.

Overall I don't think the PSA reinforces any particular hospice myth/stigma. The piece is merely a quick glimpse of hospice nursing, focused on relationship building between nurse and patient.  With the tone of the PSA being positive and supportive, I think for many in the general public (and the target audience of future nurses) this clip helps combat public concerns that hospice staff only want to get people ready for dying.  In hospice there is a strong focus on living in the present which is reinforced here.

For more commentary, you may be interested in the strong critique of the video at "Truth About Nursing."

I'm still looking for any media source with a good honest portrayal of hospice nursing.  If you know of one, please share. And don't forget to encourage hospice nurses to submit their stories.



by Christian Sinclair ·

Monday, June 11, 2012

Time Magazine teaches us How to Die

Some of you may have caught the stark red cover of Time magazine last week with the bold white font and minimalist design, which let you know lurking within those pages was a story that would let you know “How to Die.”  (Subscription required)  Now as you may recall, Time magazine was recently lauded/lambasted for the breast feeding cover featuring a 3 year old on his mother’s breast. So initially I thought this was Time magazine jumping into sensationalism again to increase magazine sales, but then on further thought would people really be stampeding the newsstands for this subject?

Upon reading the tagline “What I learned from the Last Days of My Mom and Dad,” the concept of the article became more clear. I have been noticing in the past year the increasing attention in books, news, movies, TV around caring for aging parents as it becomes a common topic for Baby Boomers. The author of this article Joe Klein gives you the essence of his article in the video embedded below (email readers click here for the original post).



The main theme of the article was the power of fee for service reimbursement causing health care professionals to push for more procedures and tests instead of taking the time to have hard conversations about the progressive frailty of dementia and aging. A feeding tube placed without much discussion, challenges in enforcing surrogate decision makers, and other situations that most hospice and palliative care professionals have heard about before.

The main turning point for Mr. Klein were ongoing discussions with geriatricians from Geisinger in Pennsylvania, Dr. Devan, and Dr Maxin. From a brief search on the web I don’t believe they are palliative care doctors but from their discussions they clearly are geriatricians in the Geripal mode. Of course you can’t have a mainstream media news article without some cliché photos, in this case Time opted for “empty nursing home hallway devoid of life except for a tree which might be fake” and “somber looking doctors in an otherwise empty room”. I don’t know Dr. Devan or Dr. Maxin, but I’m sure they are much more fun-loving people than this picture makes them appear.

The article is overall a fair representation of what many of our family member’s likely experience, but in reading the article, it felt more like therapy for the author than journalism. Did anyone else feel this way in reading it? Mr. Klein even notes:
“But we grieve in different ways, and my way, I guess, is to write about it – and also to examine the policy implications of how we treat the elderly.”
I do wish Mr. Klein choose not reinforce terms like ‘pull the plug’ and repeating that he was his parents’ “death panel” but I also realize that families I have worked with said these things and felt that way so I can understand. It was also a missed opportunity to do some education about hospice services for non-cancer diagnosis like dementia as his parents had. The two mentions of hospice are far from ideal. The hospice social worker is portrayed as a necessary villain because of a threat to call adult protective services when Mr. Klein’s father was not adequately caring for himself, his wife, nor his two sister-in-laws. The other mention of hospice is at the very end of the article just like in so many patients’ lives where hospice is only allowed to come in at the very end when the benefit could have been utilized for so much longer.

We are going to see many more articles like this. Join me in analyzing these stories and let’s talk about the impact on our field and how end of life issues are portrayed. We have a chance to make a difference by telling our own stories using the rich and inexpensive multimedia afforded by the internet and by working closely with the old guards of communication. Already there are internet message boards filled with talks about conspiracy, rationing, and a general disdain for life whenever anyone tries to discuss dying. There is a chance we may move backwards in humanities understanding of the balance of life and death. You all make a difference at every bedside you serve, but think about ways to bring that positive message to more people.

And if by chance you find any more cliché photos in news articles about end of life care, please send them to me at christian@pallimed.org. I would love to make a collection of them to help photographer be more creative. Feel free to offer alternatives to these cliché photos in the comments.

Monday, June 11, 2012 by Christian Sinclair ·

Pallimed's 7th Anniversary

While we are a bit quieter than we used to be when we started we are still here and blogging. At nearly 1200 posts, this past week marked the 7th Anniversary of Pallimed (Jun 8, 2012). No need to recount the beginnings since you can read that in other anniversary posts (linked below). But I just wanted to take a moment to mark the passage of time. Thanks for being here with us readers and sharing these posts.

As the current editor I still have grand plans for what Pallimed can be, but little things add up and it makes it hard to keep pushing for a vision when so many other priorities come first. We always love to hear feedback from readers so please share with us your thoughts in a comment or by email to christian@pallimed.org.

2006 - 1st Anniversary
2007 - 2nd Anniversary
2008 - 3rd Anniversary
2009 - 4th Anniversary
2010 - 5th Anniversary
2011 - 6th Anniversary

by Christian Sinclair ·

Thursday, May 10, 2012

Hospice Nurses Are So Important

Author with Ruth H, one of my first nurse mentors
by Christian Sinclair

As many of you in health care are probably familiar, this week is National Nurse's Week capped by National Nurse's Day on Saturday May 12th, the birthday of Florence Nightingale.  Most health care organizations do small things to recognize the important role nurses fill, but after this week it goes back to the regular grind.

Since completing a hospice and palliative medicine fellowship, I have been privileged to work alongside fantastic nurses who have been wonderful teachers, mentors, clinicians, and leaders.  I am especially reminded because in the past two weeks I have had several interactions with nurses from my past education and work experiences.  These chance meetings reinforced how indebted I am to the many hospice nurses who have helped form my approach to patients and families.

I was the sole fellow at the Hospice and Palliative CareCenter in Winston-Salem NC in 2003-4.  Dr. Dick Stephenson was a exemplary fellowship director, but there was not the luxury of numerous physician faculty many programs have today, so there was a lot of on-the-job training. I loved this experience and would not trade it for anything. By default, my key teachers were the people I worked with every day.  The hospice nurses at the Kate B. Reynolds hospice house, in IDG and traveling around central North Carolina to patients homes were the most experienced and available clinicians. I could ask them so many questions about patient and family communication, medication side effects, wound

As I began to get back into my Pallimed blogging mode, I will work the rest of the year to find more nursing related research, news articles and leadership stories.  Also in a small token of recognition I am making a $100 donation to the Hospice and Palliative Nurses Foundation in honor of National Nurse's Week and I would encourage any other doctors who read this to do the same. I know I am not the only doctor who has been influenced by great hospice and palliative nurses.**

So thank you to Ruth, Becky, Elaine, Tiffany, Sally, Maria, Pat, Michelle, Janet, Melissa, Sue, Karen, Jennifer and many other hospice and palliative nurses who have taught me so many useful things over the years, and have been willing to listen to me spout off about ABHR gel and other esoteric topics.  I am a better physician and a better person because I have worked with all of you.

If you are interested in hospice and palliative nursing, please check out the HPNA (Hospice and Palliative Nurse's Association)

Christian Sinclair, MD is the editor of @Pallimed and a palliative care doctor at the University of Kansas.

*No, the photo has not been Instagram'd, it was scanned from a time when I did not have a digital camera!
**If you email me that you have donated any amount I will update this post to show others how many doctors have participated. You can choose to have Anon, First name only or full name recognition.

Thursday, May 10, 2012 by Christian Sinclair ·

Friday, May 4, 2012

Fellowship Match: Geriatrics in, Palliative Medicine up Next?

[Ed. note: This post is a reimagining of a post at Geripal. Same facts - some simliar sentences - wholly different approach.]

This week the American Geriatric Society is holding their annual meeting and they announced they will now do a fellowship match starting with the 2014 academic year. This is huge news for geriatrics since they have been without a match since they were first officially recognized by the ACGME in 1988. It also serves as an important benchmark for palliative medicine fellowships.

Why is this important news? Both fellowships have a lot in common and hopefully directors at geriatrics programs can work with their HPM colleagues to accelerate working through the complexities of getting a HPM match. We have seen posts on GeriPal and Pallimed about the frustrations caused by not having a match.

With Geriatrics now having a match, hopefully our field will be inspired to do the same in a rapid manner. This should be easier because we have gotten past the toddler years as a subspecialty. Can you believe it was only 6 short years since ACGME officially recognized HPM? We now have over 70 HPM fellowships and a few score that have been existence under voluntary guidelines for more than a decade.

The match offers many benefits to future fellows: more opportunity to see other programs besides their home program, and more clarity on the timelines on when programs will take applications, interview, and make offers. With all these benefits it is surprising to me that out of nearly 150 recognized specialties only 50 or so participate in a match.  Thankfully our field is marching towards a match, but it is not as easy as one might think. 

I have been in discussions at meetings with over 40 fellowship directors in the room who are all desiring great candidates in a fairly small pool.  When the match comes up, the tension in the room can rival a challenging family meeting when you start talking about what dates work, and how soon to implement a program.  One thing nearly everyone agreed on is the importance of a match for fairness to programs and applicants.  The challenge is more in taking a good idea and making it reality.
If you may not understand why this is important, I again encourage you to read Brian McMichael’s post on what it is like to be an applicant in the current system:

“My [application] process was cut short by a spoils-to-the-swift ethic. Because of the asynchronous timelines, I had to decline interview offers from programs I was very interested in. Given the inherent power disparity in the roles and the dynamics involved, I did not believe I had the latitude to walk away from offers from great programs in order to "explore my options" further. Perhaps my issue, but I doubt mine alone."
It is sad that this is the first impression that we give applicants coming to the field. I am happy that Geriatrics has accomplished this and that we now realize we do not have to wait 24 years for palliative medicine to do the same.  We will do better.

[Ed. note:  I appreciate what GeriPal and Eric Widera have accomplished and their ongoing contributions to the field.  I enjoy working with him and the writers at Geripal.  These words represent no one but myself.  This is not a war between us, so please  don't make it out as such.  This is more of a creative writing exercise because after reading his post I felt insulted.  Not as a board member, or as a blogger, but as a member of this field.  We have studious people accomplishing great things in palliative medicine and hospice organizations.  We are not perfect and it is good to encourage us to do better, but language matters.  Our work makes this clear. - Christian Sinclair]

Friday, May 4, 2012 by Christian Sinclair ·

Tuesday, May 1, 2012

Blogs to Boards: Question 8


This is the fourth in a series of 41 posts from both GeriPal and Pallimed to get our physician readers ready for the hospice and palliative medicine boards. Every week GeriPal and Pallimed will alternate publishing a new question, as well as a discussion of possible answers to the question (click here for the full list of questions).  

We welcome comments about any aspects of the questions or the answers/discussions.  The feedback that we hope to get in the comment sections of the post will help us all learn important aspects for the boards. We also welcome an interdisciplinary viewpoint when answering these questions, so even if you are not taking the medical boards, your input is still very much welcome.


Mr. Smith is a 72 year old patient was admitted to hospital from his nursing home for respiratory distress due to CHF exacerbation. Despite aggressive diuresis attempts, his respiratory distress continued and his urine output remained minimal (~30ml/day). 

PMH: heart failure, moderate dementia, renal insufficiency 

Home medications: furosemide 40mg po bid, metoprolol 25mg bid, donepezil 10mg daily, olanzapine 5mg qhs.

After a conversation with his son (health care proxy) the patient was "made CMO" (comfort measures only) by the hospitalist service and resident team two days ago. He was then started on a morphine drip “titrate by 1mg as needed for pain or shortness of breath”, his donepezil, olanzapine and diuretics continued, other medications stopped. 

His intern calls in a panic: “We promised to make him comfortable, that he would die in 2 days, but he is still alive and the family does not know why he is in such pain – even with light touch – crying out & jerking.”

What is your recommendation? 

a) Stop morphine drip and start fentanyl and lorazepam prn
b) Increase morphine and olanzapine
c) Increase morphine and add lorazepam prn
d) Stop morphine drip and start fentanyl, increase olanzapine


Discussion:

Tuesday, May 1, 2012 by Christian Sinclair ·

What is the right age for kids to go to a funeral?

If you have worked in hospice for a few weeks or health care for a few years you will probably come across this question at some point.  What is the right age to take children* to a funeral? This question is asked of everyone involved with the care of the patient not just the social worker or chaplain who you might think are natural targets for such a question.  Deeper underneath this question are ones that children may naturally have about illness, death and dying.  And of course these may be questions the parent do not feel ready to answer, thus the solicitation of guidance.

You can break down the basic answers in a couple of categories that all have their pros and cons.
  • No. Absolutely no! - Obviously this answer doesn't take into account any of the unique aspects noted below that may influence the decision.  This response often comes from the feeling that protecting children form the sadder, darker sides of life is the best thing to do.  But this may come at a price later, when the child grows up and really has a less nuanced and full understanding of how death fits with life.  Finding the teachable moment as a parent is one of the trickiest skills to master.
  • Yes. Absolutely yes! - Well if absolute one way isn't so smart, absolute in the other direction must be brilliant. (Only in politics, am I right?) Sadly an always yes statement falls into a similar trap of missing the unique identifiers which guide the most beneficial path.  Forcing children to learn about something can backfire if they are not prepared.
  • How mature is the child? - Well if you cannot answer the question with an answer, then try a question.  I have heard this often and used it occasionally.  Assessing for a child's maturity and more importantly understanding of the concept of death is not the simplest task.  Sometimes my 6 year old is very mature, often times she is not. The inherently relative nature of the question may not always be helpful. 
  • Was the child close to the person? - Closeness to the deceased may or may not be a great indicator of readiness to attend a funeral.  But if the child is cl
  • What does the child want to do? This is the BEST RESPONSE IN MY OPINION. It empowers the child to have a say in this very important family event.  From this you can get a sense if the kid feels obligated, indifferent, overwhelmed from the entire situation.  In fact with death and dying discussions with children (and even adults) the best advice I was ever given was to ask what questions they have and answer them simply and leave room for more questions and discussion.  Do not try and be an expert and explain everything to a child.  They will let you know where they want to go with the conversation if you let them.
Other considerations:
  • Plan for a separate viewing and/or ceremony for children - If you are not sure how the child may react many funeral homes can work with you and have a smaller viewing or plan a ceremony to honor the loved one.  This way the child is included but does not have to be subjected to the pressure of a larger group and the Aunt who just never has the right thing to say. 
  • Access your hospice experts - Even if you have not had services provided by a hospice agency, you can usually reach out to one of the bigger ones in your community and ask to talk to a bereavement counselor and possibly a child-teen specialist.  They have a great knowledge base and can connect families with resources in their community which focus on grief and loss challenges of kids and their families.  Comfort Zone Camp is a great example that runs multiple camps nationwide.

Kansas City Star Mom2Mom poll
What got me thinking about this post was two things.  First, my 6 year old twins have known for a while that daddy works at hospice and helps people who may die.  They ask about graveyards and what happens to people in the ground there.  They have not yet had a chance to attend a funeral, but it is something I have thought about how I would answer personally.  And this morning I was pleased to see this question in my local Kansas City Star paper.  The polled mothers from their Mom2Mom micro-site.  about their thoughts and I was pleased to see this subject as part of the local Kansas City Star newspaper poll to mothers.  As always the comments illuminate the discussion. Some excerpts:
  • I've tried to teach my kids (even when I can tell they don't want to hear it) that everything living will die someday. Death is part of life ("Circle of life, Simba"). That discussion is wasted if they're too young to comprehend.
  • I was 8 when I went to my first funeral and it was my father's and it was very uncofortable/terrible experience for me. Still to this day I remember the image of my fathers's body in the casket and the memory of seeing my father like that haunted me!
Are there any tips you might share?

*I use the term broadly here to even reach to young adult.


References:

ResearchBlogging.orgBlack, D. (1998). Coping with loss: Bereavement in childhood BMJ, 316 (7135), 931-933 DOI: 10.1136/bmj.316.7135.931 (Open Access PDF)

Holland, J. (2004). Should Children Attend Their Parent's Funerals? Pastoral Care in Education, 22 (1), 10-14 DOI: 10.1111/j.0264-3944.2004.00281.x (Open Access PDF referring to this study)

by Christian Sinclair ·

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