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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 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 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

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

by Christian Sinclair ·

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