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by Christian Sinclair, MD, FAAHPM

The results are in and the public* has had their say!

The top story of the year in hospice and palliative medicine for 2014 is Atul Gawande's "Being Mortal" being published and becoming a best seller on numerous lists.  The honorable mention for story of the year was the Institute of Medicine publishing the Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life. Here is the full list with links of all the top stories.

Here is the complete list of the top stories by category with the notable person or organization indicated in parentheses.

Story of the Year - Overall
Winner: Atul Gawande hitting the New York Times Bestseller list with “Being Mortal” (Atul Gawande)
Honorable Mention: Institute of Medicine “Dying in America” report released (Institute of Medicine)

Story of the Year - Media Spotlight
Winner: Atul Gawande hitting the New York Times Bestseller list with “Being Mortal” (Atul Gawande)
Honorable Mention: Institute of Medicine “Dying in America” report released (Institute of Medicine)

Story of the Year - Organizational Impact
Winner: NIH and NINR launch pediatric focused campaign, Palliative Care: Conversations Matter (NIH and NINR)
Honorable Mention: Hospice 40th Anniversary (NHPCO)

Story of the Year - Philanthropic
Winner: AAHPM Shaping the Future campaign ends with over $1 million pledged (AAHPM)
Honorable Mention: ResolutionCare crowdfunds a palliative care service (ResolutionCare)
Story of the Year - Policy, Financing and Regulations
Winner: CMS (Medicare) considers paying for Advance Care Planning (CMS via Patrick Conway)
Honorable Mention: Palliative Care mandate for Medicaid (Medical) patients in California (Coalition for Compassionate Care of California)
Story of the Year - Social Media Success
Winner: Heart warming stories across social media featuring people with serious illness
Honorable Mention: Geripal and Pallimed hit 2 million views each (Geripal and Pallimed)

In an oversight, the Research and Education category was mistakenly left off of the poll. Pallimed will be awarding the winner of story of the year in the research and education.

Story of the Year - Research and Education
Winner: First ever Palliative Oncology conference jointly hosted by ASCO, AAHPM and others
Honorable Mention: JAMA hospice article reinforces hospice benefit in late stage cancer
Here are the complete results.  Scoring was ranked from 0-3 with 0 = no answer or not important; 1 = somewhat important; 2 = very important; 3 = extremely important.




Some other interesting findings. A few people noted that we left the WaPo and Huffington Post investigative reports on hospice care off of the list. That was not an accident, it was intentional. While notable stories, we have some concerns about the quality of those stories as we have noted before.  It is a good topic for conversation and one we will include in next year's poll on whether to include stories with more of a negative reputation.

Also we asked how many of these stories were new to you at the end of the poll.  On average the poll-takers score was 70% awareness of the stories which is good to know you are all informed!

I will add that we at Pallimed only covered some (16/46) of the stories covered 2014 Story of the Year series, which tells us two things:

1. We need more people to help us write and cover some of these great stories
2. You can start your own website to feature some of these great stories

Thanks to all who participated in the poll!

*and by public I mean 43 people. So clearly not a representative sample.  This is the first year that we have done this and despite our broad reach on multiple platforms we learned a lot this year, and will be making a more invested effort in 2015.  If you are interested in helping we are looking for people to help run future Pallimed polls and the end of the year review poll. Email editor -at- pallimed -dot-org for more info.

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**Fixed Survey Link**

A new session has been added to the AAHPM/HPNA Annual Assembly in Boston, MA on Friday March 5th from 7-8:15am.  Bloggers from Pallimed and GeriPal have been invited to give a interactive workshop on social media in hospice and palliative care.  The panel and abstract is listed below.  It is not in any of the current material and has been developed in just the past few weeks.  We are planning on presenting for the first 30 minutes and then opening it up to the group for questions. 

If you are interested in going, no need to RSVP, but if you want to help direct the content please feel free to fill out this survey (short, I swear!).  Also posting comments here is a good idea too.  The talk will be posted after the conference so learning and networking can happen before, during and after.

Title: Social Media in Palliative Care Communities: Developing and Maintaining your Online Presence.

Panel:

Amy Clarkson, MD, Kansas City Hospice & Palliative Care, Kansas City, MO (Pallimed)
Christian Sinclair, MD, FAAHPM, Kansas City Hospice & Palliative Care, Kansas City, MO (Pallimed)
Alexander Smith, MD, UC San Francisco (GeriPal)
Eric Widera, MD, UC San Francisco (GeriPal)
Amber Wollesen, MD, Saint Luke's Hospital, Kansas City, MO (Pallimed)

Abstract:
In this session, the panel will present the various social media platforms where palliative care information is being created, commented on, and shared. Understanding the importance of social media to hospice and palliative care as a field is helpful in spreading information consistent with our professional values, dispelling myths, and educating professionals in addition to patients and families. We will present successful examples of palliative care in social media from the perspective on the individual as well as the larger community. Despite the opportunities, there are concerns about privacy, time commitment, and legal risks which will also be addressed. The session will not go into detail on the 'how-to' aspects of specific social media platforms. The initial presentation will be approximately 30-40 minutes with plenty of time for discussion with the audience and panel.

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Thanks to 100+ people who participated in the Pallimed survey on Palliative Care Experience with Intrathecal pumps.  Before we get to the results, I am open to collaborating with anyone who would like to take this further and pursue scientific polling with an aim at publishing in a medical journal.  This survey was an initial toe in the water to see if some of the same issues I was seeing in clinical practice echoed in other medical communities.

So on to the results.  Here are the aggregated responses by question.

Most of the respondents (nearly 70%) were doctors probably reflecting the staff member most likely to have interaction with intrathecal pumps and their programming.  It also possibly reflects our reader demographic although in our annual reader survey doctors only make up less than 40% of the respondents.

Clinical experience with IT pumps is low with 75% seeing zero to 4 patients in the last 12 months.  My own experience is above 20 among my time in inpatient hospice, palliative home care and palliative care consults in a hospital over the past 12 months.  There was only one 'other reply' that tells just enough to wonder if there is another question that should be asked: 'with one referral that we declined.'  A follow up question indicated only 29% of respondents had actually changed settings on an IT pump before with 32% feeling very or somewhat confident. (Who are the respondents who feel confident even without having changed a pump before?)


In asking the level of pain relief observed in patients from their IT pump the responses indicated good success with 80% reporting moderate to excellent pain relief. But in the comments another story was emerging with statements such as:

• accentuates a placebo effect
• Depends significantly on the practitioner placing the pump, pt expectations, and type(s) of pain
• Each and every one had inadequate management
• every patient is different some get great relief, others not so great.
• Have had widely variable experiences from tremendous relief to being perceived as worsening pain!
• IT pumps give excellent relief IN APPROPRIATELY SELECTED PATIENTS, who are rare
• Sometimes work great; many times don't. probably 20% good; 80% not so good
• The patients I have cared for already had IT pumps and were not in good pain control when I met them.
• unreliable d/t apparent blockages in line at times?

Now even in these comments a lot of issues come up.  What are the patient selection criteria?  Are we as recipients of patients after implantation seeing a selection bias? (i.e. There pain is still not well controlled with an IT pump so let's see if palliative care has any ideas?)  What is adequate management of an IT pump?

95% of people indicated patients on IT pumps were still on systemic opioids despite having an IT pump.  I have heard some patients and families report 'the IT pump was put in so we wouldn't have to be on morphine/oxycodone/methadone/etc.'  Maybe any future IT pump studies need to have an outcome for mean daily opioid dose reduction or a binary outcome for off oral opioids at 1 month, 3 months, etc.


I asked the question about co-existing existential/emotional/relationship pain because patients with IT pumps seem to already have complex pain by the time I have been getting involved with them (the specialist effect/bias?).  So it was interesting to find palliative care staff felt 40% of this patient populations seems to have more non-physical pain modifiers contributing to the complexity of effective management.  A possibility exists for exploration of these pain affecting parameters before placement of IT pumps since they are unlikely to be affected by intrathecal pumps.


Access to supportive resources has been an area I have found challenging when working with IT pumps.  The key is to be proactive and develop these essential relationships before they are actually needed in a crisis.  I am lucky to have two physicians and their teams that have been exceedingly responsive and cooperative in managing these patients.  But I have also have had doctors who have never bothered to return multiple calls and made it difficult to do effective ongoing management after the IT pump is placed.  These are not 'set it and forget' medical tools.  Some excerpts of the 15 comments help give some flavor to the above chart:

• Depends... when I have been covering hospice sometimes we have no access
• Hopefully access to physician either having implanted, or currently managing, the pump. Ideally the pump has come either with pre-written orders for dosage adjustment if needed.
• Just haven't gone there yet, and when referral was sent for inpatient unit; we did not feel we were able to provide the right care without a good system in place for handling this.
• Moderate access to doctors - some are very accessible; others not so much
• None of the docs who place the pumps have any way to help if the patient will not come into the office.
• Nurse in the hospital who manages.
• Pain physicians state they are available at all times however can be very difficult to reach urgently. They may be covered by anesthesiologist who take a hands off approach. Once reached the pain specialist seen to act appropriatly (sic) and be helpful. At times the expectation is the patient will need to seen which may not be possible from the patient standpoint.
• while I have easy access, the patient may not, due to insurance issues.
• work with chronic pain team who has the interrogator. they make the ordered changes

The one question that had the most comments I am still wading through.  The questions was "Tell me your opinions about IT pumps for pain control in hospice and palliative care patients."  The responses are published on a different web page to save space here, but read through a few of the 68 responses and you get a big feeling of lukewarm to cold feelings towards IT pumps an effective pain modality.  This brings up a few major issues:

• We need better communication channels with our colleagues in interventional pain before during and after IT pump implantation.
• We need to study patients with IT pumps in palliative care arenas to see what specific characteristics lead to good or poor pain management.  Patient selection criteria, management differences, access to qualified professionals, pain modifiers, use of concurrent opioids, psycho-social concerns, and on and on.
• We need to look at outcomes for this patient population in palliative care.
• We need better training on how to best medically manage and practically manage the systems surrounding IT pumps.
• And we need to publish and communicate about this issue beyond this blog post.

Oh and given the 98% of people who responded to more polling (occasionally) we will be planning more of these in the future so feel free to email me at ctsinclair@gmail.com or post in the comments any ideas for future polls.

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Holy cow!  You have really given me some great information to work with.  I am still combing through the info and promise to post my informal analysis by Thursday evening.  I will be closing the survey late Wednesday evening so if you thought about doing it but have not yet, better hurry up.

You can use this link to email your colleagues if they would be interested in taking it but are not readers of Pallimed (For shame!): http://www.surveymonkey.com/s/CCY2BTL

Regarding the non-scientific-ness of the poll: if any of you would like to collaborate on a more scientific poll to be published acadmically let me know.  And I think you will when you see the results post later this week.  The poll was a spur of the moment/carpe diem creation from stuff that was pent up for a while.  And yes some of the questions were meant to be a little fun but still informative.  That is why I made lots of room for comment boxes.

By the way some of you are great comedy writers.  Here is my favorite line so far:

"I'm a palliative care physician trapped in a medical oncologist's body..."

So keep the surveys coming.  I promise we won't be doing these all the time but the range and intensity of responses is pretty good! Maybe something we do quarterly or PRN on big timely issues. If you have ideas for other surveys to do in the future please feel free to comment or email me. 

Oh yeah, don't forget to take the survey if you have not.

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In my hospice and palliative medicine practice I have been seeing many more intrathecal pumps being used in the past year then I can recall.  More and more palliative care doctors are telling me they are being asked to help in the management of these pumps and they express different levels of comfort and competency.  So as I thought more about this, I wanted to write a post about all the issues I have concerns about regarding the use of intrathecal pain pumps for hospice and palliative care patient populations mostly for the indication of cancer related pain.

But I decided instead of telling you how I felt and laying all the issues out I would take your pulse and use that to better inform my writing, so please take this short (less than 5 minutes...I swear) poll.  Your reward for taking the poll is multiple: 1) you see what others are thinking about this 2) you contribute to the informal knowledge base of attitudes and experience regarding IT pumps 3) you get a better researched post from me.

The poll is aimed at nurses and doctors.  Please feel free to pass it on.  More voices = more opinions.

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For those Pallimed readers wanting to discuss the hospice cap controversy you may be interested to know about a redesign to the National Alliance on Hospice Access website which now allows for more interaction and commentary. The past site was very static and only gave out information and now with a blog as a central anchor the NAHA is posting with some regular frequency about why the Medicare Hospice Cap should be reformed.

So far the comments have been scattered and have been mostly people agreeing with the position the NAHA is taking. I was surprised to see the general negative view towards the NHPCO as noted in this post "Entrenched Hospice Interests Oppose Hospice Cap Reform, And Any Hospice Reform." Dave Daucher writes:

"Why do large urban hospices oppose reform that would improve access, save money and help independent rural hospices? Why does the NHPCO, which solicits dues from over 2,000 hospices, lobby solely on behalf of a relatively few large urban hospices? Why do NHPCO “talking points” say they need to “collect data” and “study things”, when there has been no data collection, no real study and no reform for the past 10 years? And what are the “unintended consequences” they’re worried about?"

Perusing the blog I did come across a CBS News story on the hospice cap from just a few days ago. Tell me what you think about the coverage. Does it match your understanding of the hospice cap? (Video player embedded below - text link from CBS here)



The Hospice Foundation of America describes the press coverage as misleading here. Even if you are not affected by the cap directly I do not think it will be good for the hospice movement as a whole if this divides us, nor if it makes the American public misunderstand what hospice is about like this one of 42 comments from the CBS news site:

I "used" to work for a Catholic run hospice program. The way they got around this was to start upping the morphine doses before the six months were up. The patients that were allowed to linger longer were those who had substantial wealth and paid their own way.
Posted by grammawhamma at 5:17 PM : May 31, 2008

I really hope that is not the perception of a 'solution.' If that is happening, posting an anonymous comment on a website is not living up to your obligation to report inappropriate care. Since I think it is likely a gross misrepresentation of what hospice staff do everyday, I think that is not the case.

So back to the hospice cap...we will have for the first time ever a poll here about a hospice issue.

Look in the top left hand column for the poll. you have one week to vote in this extremely unofficial look at opinion here. Feel free to comment on this post if my choices did not leave you with enough options!