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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.

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[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]

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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.



Discussion:Show/hide Discussion

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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:

Black, 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)

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As you may have heard Facebook is going public as early as next week.  In a curious (or expected) show of goodwill and an attempt to make use of Google's (slightly ironic) mantra "Don't be evil," Facebook CEO Mark Zuckerberg announced that today you can add your organ donor status to your Facebook profile.  This will be an interesting social experiment in the wild to see if organ donation could go viral.  Palliative care clinicians will all recognize the issue with a shortage of potential organs for those in need.  We talk to patients and families all the time that are holding on to hope for a possible transplant. 


One quality measure as you can see from the picture above is the link to actual state registries.

Could something like this work for advance directives like durable power of attorney or a living will?  In addition to listing family you could also list who your DPOA was.  It may even lead to an interesting study to see how networked DPOA's are and even if they might be able to find each other better and talk about how to be a better DPOA. I'm unsure if I will post my organ donor status on Facebook.  I post a whole lot of other things, but this feels like it crosses a different threshold.

What will you do if you are on Facebook? (I already know what everyone who is anti-Facebook is going to say, but you can share your thoughts too of course!) Is Facebook the right platform to merge online registries for health issues that are struggling to get more traction?  You want to be where the eyeballs are right?

The New York Times and The Atlantic cover the issue in more detail if you are interested.