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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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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...

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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.

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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.

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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.

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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

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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.