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We are fortunate enough to have two back to back contests to give our loyal Pallimed readers.  We just announced our winners of our first contest and now if you were not able to go to Chicago you can enter this next contest, because you can just stay home.


The Metta Institute is giving two lucky Pallimed readers a complimentary individual registration for their May 3rd teleconference "Being with Dying" with Joan Halifax Roshi, a Zen priest, Founder and Co-Abbot of the Upaya Zen Center (Twitter: @UpayaZen) . The teleconference will focus on "Being with Dying" and the essential role of compassion in caregiving. She has worked in the area of death and dying for over thirty year and has been a keynote speaker at NHPCO and AAHPM national conferences. The cost of the teleconference is $25 for individuals or 10 for $150.

To enter for one of the two registrations you have three simple ways and each time counts as an entry:

1. Add a comment to this blog post.  The content is not critical but if we want to start a discussion of mindfulness and compassion in caregiving that would be topical! If a discussion really gets going that could be a lot of entries.
2. Tweet about the conference/contest: Examples: 
• "Hoping to win the @Pallimed Contest for the Metta Institute teleconf with @jhalifax #hpm" 
• Just make sure to include the words '@Pallimed' and 'Metta' since that will be how I find your tweet for an entry!
• Yes you can follow Joan Halifax Roshi on Twitter at @jhalifax
3. Comment on the Pallimed Facebook Fan Page about the contest either on the post mentioning this contest or just in general. Content is not important but again start a conversation and each comment is an entry.

Winners will be announced on the Facebook Fan Page at 3pm Central.  Winners will be asked to blog about the conference and will be posted here on Pallimed to share what you learned.

Any feedback on these contest is appreciated either on this blog post or at christian@pallimed.org.  No money or goods were exchanged for this contest.  It is open to everyone except me including Pallimed contributors. You do not have to be a subscriber to Pallimed, nor a health care professional.

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Thanks to all who emailed in to win.  We have our winner to for one complimentary pass for a Pallimed reader to attend this meeting June 22-24th in Chicago. 

Congratulations to Holly Kirkland Walsh, FNP, GN, who will attend and report back to us on what she learned from the summit.


The alternates should Holly not be able to attend have been notified by email.  If you did not receive an email then you didn't win this time.  But no worries we will have others.

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This short film is a perfect fit for today's world filled with distractions and...hey what's that shiny object over there.  Sorry.

This 4 minute film titled "THE UNSPOKEN" from Jason van Genderen was the runner up at Tropfest Australia 2011 and is more powerful than even a Hallmark commercial, more heartfelt then a torch song, and evidence that we are capable of appreciating people before they are dead and gone. 



Congratulations to Jason on his recognition and thank you for giving so many people an example of what 4 minutes of talking can accomplish.

And as always check out the 81 comments and counting on YouTube for some insight in to how this affects people.

Some examples:

Thank you for this. My dad has been battling with heart disease for the past 25 years, and over the past few months he's been deteriorating quickly. it's scary to think of a world without him when he's been my whole world and my best friend. I want to tell him this, but I can't, because I don't want him to know I have such morbid thoughts and want to give him hope.

Very hard to watch as my husband passed away recently from lung cancer and I wish my husband had acknowledged he was sick, so we could have spoken those unspoken words.

Wow. I'm usually described as heartless, yet this brought me to full tears. Bravo.

Congratulations. What a precious gift. Sharing it with the world will hopefully inspire others to start communicating while they still can. 

Such a great film, I can't even describe how this made me feel. I lost my grandfather 5 years ago, he teached (sic) how to be a good man in life and he gave me his sense about music, I coudn't say goodbye to him but I know he's still a part of my life in some way.

Thanks to @GroundSwellAus for the tip!

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A few recent studies about mitigating chemotherapy complications have caught my eye and bear mentioning.

The first couple are about neurotoxic complications of chemotherapy. I've been seeing  a lot of patients who have had quite severe problems from (usually chronic) peripheral neuropathies related to their chemotherapy. At least occasionally these complications are devastating - leading to very difficult to manage, disabling pain. I haven't seen this confirmed in the literature, not that I've gone looking, but my sense is that these sorts of complications are becoming more and more common, perhaps in part to expanding use of taxane-based chemotherapy, and other newer neuropathic agents like bortezomib. Despite this, there are no proven (ie, in well designed, controlled trials) analgesic therapies for painful chemotherapy associated neuropathies, at least the last time I looked at the literature (when I was editing this Fast Fact) - I haven't seen anything major come out since, but please leave comments if you know of controlled studies I'm missing.

Annals of Oncology has the results of a randomized, double blinded study of venlafaxine for the prevention of oxaliplatin neurotoxicity.  The patients (n=54, median age 67 years, most with metastatic colorectal cancer) all had experienced acute oxaliplatin neurotoxicity in the past.  They were randomized to 50mg of venlafaxine 1 hour prior to oxaliplatin infusion, followed by 37.5mg of venlafaxine extended release bid on days 2-11 after chemotherapy (vs matching placebo).  This same regimen was re-started for subsequent oxaliplatin cycles - they don't talk about how many cycles on average patients ended up receiving venlafaxine/placebo.  Primary outcome was the fraction of patients who had complete prevention of acute neuropathy - they looked at several secondary outcomes including chronic neuropathy symptoms.

Venlafaxine came out looking very good.  31% of patients experienced no acute neuropathy on venlafaxine, vs 5% with placebo.  For those who did have symptoms, a greater proportion on venlafaxine  reported greated than 50% relief in their symptoms (69% vs 26%) compared to placebo.  Notably, they asked patients 3 months after the cessation of oxalaplatin-based chemotherapy; fewer patients who had received venlafaxine reported serious persistent neuropathic symptoms (0% vs 33%).  All these differences achieved statistical significance (ie P less than 0.05, using 2 sided tests).  Venlafaxine had more immediate side effects (nausea, vomiting, asthenia) compared to placebo.  They did not measure unblinding effects, although they did mention they had difficulty meeting accrual because very quickly clinicians began perceiving venlafaxine as effective and stopped being comfortable referring patients to the study.  Drop outs were similar between groups.

To me this is convincing evidence that venlafaxine reduces the incidence and severity of oxalaplatin acute neuropathy, as well as prevents and attenuates its chronic neuropathy, at a modest price of its immediate side effects.  This is a small study, but I've become, lately, more of a fan of well designed small symptom studies.  You want symptom interventions to be immediately effective, have a wide therapeutic index, and have very low NNTs (less than 5 patients).  If you need 200 patients to show a marginal benefit it's probably not a highly effective therapy (cf the vertebroplasty trials - there was a trend towards effectiveness in one of the trials which may be 'real' - however if you need even more people to demonstrate a marginal benefit I just can't see how this is a great thing at least in the population in which it was studied).

The caveats here are to remember this is only about the prevention of oxalaplatin neurotoxicity.  The physiology of neurotoxicity from other agents probably is different, and one can't conclude that because agent X prevents neuropathy with chemo Y, that it is generally effective to treat/ameliorate the pain from an established neuropathy from chemo Z.  Of course it might, maybe for some patients, we don't know, and I'll probably continue to cycle through my cadre of analgesics and adjuvants, systemic and topical, hoping that something works which, you know, sometimes it does.  What are others doing?  Any luck with topical agents?

Roxy Paine: 'Dendroid Drawings & Maquettes @ James Cohan

The other novel intervention, which has some promise as a non-specific palliative intervention for chemotherapy induced peripheral neuropathy, is a cutaneous electrostimulation device ('a scrambler' device - not TENS, but in that ballpark).  This is the only (unblinded, uncontrolled, pilot) study of it I've seen, but the magnitude of the results are certainly compelling enough, and it seemed to be effective for multiple varieties of chemotherapy induced peripheral neuropathy, that one is looking forward to the controlled trials.

The other study I noted about acute chemo complications is this one from Journal of Clinical Oncology about the natural history of paclitaxel-associated acute pain syndrome.  This was something I've seen clinically now and then, but appreciated a chance of reviewing it more in depth.  About 3/5 of patients reported worsening pain with/after paclitaxel dosing, which peaked on day 4.  Development of the acute pain syndrome , which includes diffuse body achiness/myalgias as well as sensory symptoms like tingling & numbness, seemed to predict developing a chronic peripheral neuropathy.  The authors also conclude that the characteristics of the pain syndrome argue that it is a neuropathy (acute neurotoxic symptoms) despite its common manifestation of whole body myalgias which could also suggest a myopathy/myositis.

And finally, gabapentin was studied in a randomized, blinded, placebo controlled trial in the prevention of chemotherapy induced nausea and vomiting (added to ondansetron, dexamethasone, and ranitidine - this was a Brazilian-based trial group).  Patients received gabapentin for 5 days before and 5 days after chemotherapy (or placebo).  Patients receiving gabapentin had lower rates of both acute and delayed nausea & vomiting.  I've never used gabapentin for nausea (either its prevention or treatment):  anyone have any experience with this?

J. P. Durand, G. Deplanque, V. Montheil, J. M. Gornet, F. Scotte, O. Mir, A. Cessot, R. Coriat, E. Raymond, E. Mitry, P. Herait, Y. Yataghene, and F. Goldwasser (2011). Efficacy of venlafaxine for the prevention and relief of oxaliplatin-induced acute neurotoxicity: results of EFFOX, a randomized, double-blind, placebo-controlled phase III trial Journal of Clinical Oncology : 10.1093/annonc/mdr045

Smith TJ, Coyne PJ, Parker GL, Dodson P, & Ramakrishnan V (2010). Pilot trial of a patient-specific cutaneous electrostimulation device (MC5-A Calmare®) for chemotherapy-induced peripheral neuropathy. Journal of pain and symptom management, 40 (6), 883-91 PMID: 20813492

Loprinzi, C., Reeves, B., Dakhil, S., Sloan, J., Wolf, S., Burger, K., Kamal, A., Le-Lindqwister, N., Soori, G., Jaslowski, A., Novotny, P., & Lachance, D. (2011). Natural History of Paclitaxel-Associated Acute Pain Syndrome: Prospective Cohort Study NCCTG N08C1 Journal of Clinical Oncology, 29 (11), 1472-1478 DOI: 10.1200/JCO.2010.33.0308

Cruz, F., Iracema Gomes Cubero, D., Taranto, P., Lerner, T., Lera, A., Costa Miranda, M., Cunha Vieira, M., Souza Fêde, Schindler, F., Carrasco, M., Afonseca, S., Pinczowski, H., & Giglio, A. (2011). Gabapentin for the prevention of chemotherapy- induced nausea and vomiting: a pilot study Supportive Care in Cancer DOI: 10.1007/s00520-011-1138-4

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As it's been noted on the blog before, it's safe to say we are in the midst of a transition towards increasing restrictions on our ability to prescribe opioids to our patients, although the nature of these restrictions are really just emerging**.  All of this is, of course, in response to the horrifying epidemic of prescription opioid abuse - see this recent New York Times piece for a bone-chilling description of prescription opioid abuse in Appalachia.

Which is not to say that some of the recent high-profile scholarly publications on the risks of chronic opioid therapy make me very, very grumpy, at least how they are interpreted in the headlines and editorial page.  I've really appreciated Stewart Leavitt's ongoing, critical discussion of these publications (and the larger editorial/media conversation) at his Pain Treatment Topics blog, and I couldn't presume to do a better job analyzing the studies than Stew.  See, for instance, this analysis of two recent high-profile publications purportedly about the dangers of opioid therapy.  I read both the studies he mentions, as well, and thought to myself:  Gee, these studies seem to highlight how safe chronic opioid therapy is.  Read his analysis and the articles and decide for yourself, but I concluded the same thing he did:  while the risk of fatal overdose increases with increasing prescribed dose, the absolute risk of fatal overdose (in these studied populations) was exceedingly low. 

**Yes, I actually wrote those words last night.  Subsequently my inbox gets flooded with notifications that the FDA has announced its long-awaited REMS program for long-acting opioids...kind of.  Press-release here, which discusses, in broad-strokes, a multi-agency strategy (beyond REMS) to help stem the epidemic.  We are told the key elements of the strategy will be:

• expansion of state-based prescription drug monitoring programs
• recommending convenient and environmentally responsible ways to remove unused medications from homes
• supporting education for patients and health care providers
• reducing the number of “pill mills” and doctor-shopping through law enforcement

 All of this sounds swell of course, but the devil will be in the details, which are still forthcoming, and in part will be defined by manufacturers.  The plans, as far as prescribers are concerned, seem to be mostly about increased education, but nothing along the lines of requiring prescribers to complete and sign off on certain educational materials in order to prescribe certain drugs, etc.  Nods are given to the importance for balancing the needs of patients to receive pain relief and the public health catastrophe diversion and abuse of prescription opioids.  I still think, at the end of the day, that docs aren't detectives, we can't be, and with the exception of a tiny number of completely clueless prescribers and some criminals, targeting prescribers just isn't going to help.

I'd recommend reading Stew Leavitt's analysis for a more knowledgeable discussion of the announcement.

Photo from the FDA's press-release.

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An unusual and sobering study on the state of the “palliative oncology literature” has recently been published online. Searching 6 bibliographic databases, this group from M.D. Anderson undertook a massive review of the palliative oncology literature, comparing from 2004 and 2009 the number of articles, proportion of all oncology articles, topics, and study designs.

The paper begins by highlighting the familiar barriers to palliative care research: limited research funding, few personnel trained in palliative care research, difficulty in recruiting and retaining patients/subjects, methodologic issues. They also pointed out that there still isn’t a consensus taxonomy and classification system for palliative care literature (can you tell they had professional research librarians on the teams?). An issue in designing this study is the great complexity and diversity of the palliative care literature. Here’s a sentence I loved: “Unlike other disciplines, palliative care transects numerous domains.” Ever seen ‘transect’ in a palliative care paper? The number of clinical issues, populations (multiple subsets), disciplines involved, and something they didn’t mention, the diversity of publication titles, makes the task of reviewing the whole of the literature for a specific major disease class pretty overwhelming to contemplate. They admitted, in a bit of understatement, that it was a “labor intensive” project.

I’ll skip over the study methods and jump to the results. Combining the 2 periods,

• Of over 6000 articles screened 1213 were reviewed. A significant proportion of studies were excluded from this review because they involved topics such as palliative chemotherapy with survival as the primary endpoint
• 70% of papers were original studies
• 42% of the studies were published in palliative care journals while 19% appeared in oncology journals
• Over 400 journal titles had at least one palliative oncology paper.
• “The palliative oncology literature is flooded with descriptive studies when we urgently need more practice-changing analytic studies.”
• Physical symptoms, health services research and psychosocial issues were the most common topics. There were many “orphan” (under-studied) topics even under physical symptoms).
• Pediatric palliative care was “largely unexplored.”
• Providers and lay caregivers are under-studied
  

Over the 5-year study period:

• The proportion of palliative care articles in the oncology literature remained below 1% and even decreased slightly, despite an increase in absolute numbers of papers.
• There was a 47% increase in original studies.
• The percent of randomized controlled trials decreased from 7% to 5%

Overall, the results show a disappointing lack of improvement in the overall quality and quantity of the palliative care articles focused on the oncology population. This is inherently limiting in addressing the total palliative care literature, but it would be time and cost prohibitive to do the same analysis over that larger universe. The barriers to doing palliative care research, especially improving the evidence base for treatments, haven’t changed and, despite increases in overall numbers of papers, methodology remains weak. Perhaps this paper will help to focus attention on improving the science of palliative care research.

By the way, articles in The Oncologist have recently been made freely available (again) with registration to individuals.


Hui, D., Parsons, H., Damani, S., Fulton, S., Liu, J., Evans, A., De La Cruz, M., & Bruera, E. (2011). Quantity, Design, and Scope of the Palliative Oncology Literature The Oncologist DOI: 10.1634/theoncologist.2010-0397

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In a previous blog I asked about coverage of some of the other main palliative care meetings as a new role for Pallimed.  Hopefully many of you are already attending these meetings and if you are you are welcome to email me in advance and get your complimentary 'Pallimed Blogger Press Badge' in exchange for giving us a summary of what you learned while you were at the conference.  Until now the Pallimed Blogger Press Badge really didn't hold much value beyond getting you into all the swankiest clubs and a Pallimed/GeriPal Party if it was being held in your city.  (They only happen once per year!)

But now we are entering a new era...

In an arrangement with the World Congress, they have given us one complimentary pass for a Pallimed reader to attend this meeting June 22-24th in Chicago.  Once you attend then you can report back on Pallimed with a blog post about your experience.

To be considered please email me at christian@pallimed.org with the Subject 'Pallimed Contest'. For additional consideration about how excited you would be to take this opportunity, comments on Pallimed, Facebook Fan Page and Tweets containing @Pallimed will all be considered.  From all the applicants the winner and two alternates will be selected and posted on the Pallimed Facebook Fan Page and Twitter on Wednesday at noon, and posted to the blog at 10pm that evening (all times Central, because it is the best time.)  From all the entries a random number generator will be used to select the winner and the two alternates.

If you are selected and end up not being able to go, I have the right at some time in the future to call you silly names in private.

Fine Print
You must be able to travel to Chicago to attend the majority of the meeting.  No hotel or travel expenses will be reimbursed.  No monetary reimbursement will be disbursed.  No money was given to Pallimed or any of the editors, or contributors for this arrangement.  This contest is open to current and past contributors

If you are interested in having a Pallimed blogger at your conference, please email christian@pallimed.org for details.  Selection of conference is at the discretion of the editors.

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Earlier this month the 2011 ACP annual meeting was held in San Diego.  In addition to escaping New England to Southern Cal in early April, I got to see old friends at San Diego Hospice, meet the fellows, and catch some pearls at the ACP meeting.  I wish there were more of us there tweeting and blogging, because I could not catch all the talks I wanted to.  Here are some of the articles highlighted in talks I attended that may be pertinent to our field:


Updates of Ethics, Dr. Sha reviewed key articles/events in palliative care and ethics:

• The CDC takes a stand on distributive justice during influenza pandemics in allocating ventilatory support to patients. - Article: Manuel ME Pandemic Influenza: Implications for Preparation and Delivery of Critical Care Services J Intensive Care Med. Jan 10, 2011 doi:10.1177/0885066610393314 
• Medical students who reflect, debrief with faculty about a death they experience, show more empathy and professionalism. - Kelly E, Nisker J. Medical students' first clinical experience of death. Med Ed 2010 
• Challenging autonomy in medical decision-making in critical care settings - some advocate for increased beneficence to ameliorate the distress of surrogate decision-makers. - Curtis JR, Vincent JL. Ethics and End-of-Life care for adults in the intensive-care-unit. The Lancet, Oct 2010. doi: 10.1016/S0140-6736(10)60143-2 
• Can we help the homeless complete advance directives? A study by Song and colleagues say yes! Song J, et al. Effect of an end-of-life planning intervention on the completion of advance directives in homeless persons. Ann Int Med. 2010;153:76-84.
• Other references:
• Laurey S, et al. Unresponsive wakefulness syndrome: a new name for the vegetative state or apallic syndrome. BMC Medicine. 2010; 8:68
• Powell T. Life imitates work. JAMA 2011; 305:542-43.

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This post is part of the 2011 Blog Rally for National Healthcare Decisions Day. If you have a blog please post it and leave it up on the front page through April 16th. -Ed.

Rallying to Encourage and Empower Us All to Make Our Healthcare Decisions Now for the Unknown Later…

College education. Career path. Relationships. Starting a family. Buying or selling a house. Vacations. Retirement. From the age that we’re old enough to understand, most of us are taught and accept that these are the markers in life that we plan for. However, there’s one key marker that’s all-too-often missing from this list: healthcare decision-making. Like planning for these other life events, planning for the time (or times) that we are unable to express our healthcare wishes is of the utmost importance. It is something that should be well thought out, documented and revisited at different points in life to reflect any change in our desires or family situation or the person we wish to advocate for us. Unfortunately, it is a planning point that that majority of us have missed. As a consequence patients’ families suffer the added burden of having to guess when a health crisis happens. That’s why Nathan Kottkamp founded National Healthcare Decisions Day (NHDD) back in 2008 and why this nationwide advance care planning awareness initiative is as important as ever. So this year, I’ve joined my fellow bloggers throughout the country to spread the word about the importance of advance care planning with this special NHDD edition blog.

NHDD, which happens every April 16, is a collaborative effort of national, state and community organizations as well as dedicated individual advocates committed to ensuring that adult Americans – like you and me —have the information and opportunity to communicate and document their healthcare decisions.

April 16 is rapidly approaching, so it’s time to kick the engagement effort into high gear. Here are some things you can do for yourself and your loved ones to prepare for NHDD 2011:

• Lead by example. Schedule time with your loved ones (on or before April 16) to “Have the Talk” and complete your own advance directive. There are many tools, including free forms, you can use to walk you through the process and make your wishes known; access them through the NHDD Public Resources page.
• Encourage your loved ones and friends to learn more about advance directives and to complete their advance directives. You can forward this link: http://www.nhdd.org/p/resources.html to them. Or, encourage them to find a nearby participant and attend a local NHDD event.
• Share your advance directive with your healthcare providers and make sure it is on file in the event it is needed.

Already had the conversation with your loved ones, but want to do more? Here a few suggestions to rally support for NHDD and encourage even more action:

• Like the NHDD Facebook fan page and share it with your Facebook friends
• On Twitter? Follow @NHDD and share the information with your followers, i.e. ‘Just 5 days to #NHDD, when will you #havethetalk? @NHDD can help: http://bit.ly/glff1V’
• Send an email to your friends, staff, colleagues, lodge/social club members, and/or house of worship, telling them that you are participating in NHDD and encouraging them to do the same. Share the information above with them and/or use this template email:
• April 16 is National Healthcare Decisions Day, and I hope that you will join me in taking this time to discuss and document your healthcare wishes. We all need to be prepared in the event of a health crisis, and having the talk is easier than most people think, but many of us need a little inspiration or a reminder to do it. I hope that this message and National Healthcare Decisions Day are all you need. Please mark your calendar for April 16 to have the talk with your loved ones. There are all sorts of free resources, including free advance directive forms for each of the 50 states, on the NHDD website: www.nhdd.org. Additionally, please help me spread the word with Twitter, Facebook, and LinkedIn. Advance care planning is something we ALL should do and encourage others to do, regardless of age or current health. Discussing your wishes can be one of the most important gifts you ever give your loved ones.

Act now and grow this rally further: use and share the resources available through the NHDD website and encourage and empower us all to make our healthcare decisions now for the unknown later.

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I can't get enough of this month's Surgical Clinics of North America (April 2011).  Thoughtfully presented, the entire issue creates a three dimensional view of palliative care in surgery.

Dedicated to Jack Zimmerman, MD, FACS, who helped establish one of the first hospices in the US while Chief of Surgery at Church Home and Hospital in the 1970s, Surgical Clinics of North America presents a well-rounded and well-thought through collection of papers on Updates in Palliative Surgery.  Geoffrey Dunn's introduction outlines the successes of our field, while also honestly presenting the challenges to its growth - from the limited research funding to the heated political arena, even daring to use the term "death panel."  He generously credits our field with as being "a timely lens through which the socioeconomic and spiritual bankruptcy of the current health care system [...]"

Spiritual Dimensions of Surgical Palliative Care

Inpatient Palliative Care Consultation: Enhancing Quality of Care for Surgical Patients by Collaboration

Palliative Medicine in the Surgical Intensive Care Unit and Trauma

Care of the Family in the Surgical Intensive Care Unit

Palliative Surgical Oncology

Communication Skills in Palliative Surgery: Skill and Effort Are Key

Image-Guided Palliative Care Procedures

Palliative Care in Lung Cancer

Palliative Care and Pediatric Surgery

Palliative Care in Urology

Surgical Palliative Care in Haiti

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***Update 4/12/2011 - Morpheme Conference postponed to the Fall 2011***

As May 6th gets closer I wanted to remind you there are only a few slots left for our inaugural conference on New Media for Palliative Professionals.  If you need a refresher I included information from a previous post on the conference.  We hope to see some of you there for a fun weekend in Birmingham.

Sign up soon before the last slots are taken!

From the previous post
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I am very excited to announce the first ever Morpheme Conference May 6-8th, 2011 to help palliative professionals from any discipline work with new media and creative writing. This project got started back in the Fall of 2010 at the AAHPM Board Meeting when Amos Bailey approached me to talk blogging. We began discussing his experiences writing on his blog about gardening and my work with Pallimed. Amos had been thinking about a small workshop hosted in Birmingham, and I eagerly signed on given our aligned values for getting our field proficient in social media and blogs.

So if you are interested in blogging and want to come join us for a beautiful May weekend in Birmingham! We would love to see you. The cost for the whole weekend is $400, making it probably sub $1000 if you include hotel and travel. We are hosting dinner Friday and Saturday night, and are limiting enrollment to 12 to enable good small group feedback.

Check out our blog (naturally) for the conference to see why we chose the name 'morpheme' and learn more as we highlight good blogs in the next few months leading up to the conference. If we have a good turnout we will likely do this again in the Fall. Help build the network of palliative care bloggers and have a good time learning a new skill.

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The problem of pain and suffering is important in the developed world.  Most of us work through these challenges daily, but a much larger problem exists on the international level with few countries having access to effective opioids, pain relief and palliative care expertise to the level we have in the United States and Canada.  Efforts like the Foundation for Hospices in Sub-Saharan Africa and international educational efforts via programs like San Diego Hospice are ways that the palliative care community is reaching beyond our work locally.

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After Hill Day is over, NHPCO will be hosting their 26th Management and Leadership Conference at the nearby Gaylord National Conference Center.  Just in time for the end of the Cherry Blossom Festival! I have never been to the MLC before but have been to the Clinical Team Conference a few years ago.  This session looks to be much more about the administrative issues as opposed to the medical-clincal aspects of the AAHPM and NHPCO CTC conference.  I am only able to go for the Friday sessions, but after looking over the sessions this past week I see many more topics that I would be interested in.  Reading through many of them I am reminded of the absence of a voice in the blogosphere since Hospice Guy at Hospice Blog left in 2009.  We don't have anyone really covering the day to day administrative issues of running a hospice.  (If you are out there Hospice Guy - email me, I have been wanting to talk to you and you have not answered your emails for the past two years!)


If any one is attending MLC and would like to tell us what you learned, we are open to hearing from you. Feel free to write a guest post.  I will report back this weekend on interesting things I picked up from the conference.

If you any Pallimed readers are attending feel free to email me at christian@pallimed.org and hopefully we can meet up. Another opportunity to get together would be the Social Media session on Friday from 11a-Noon at which I am co-presenting with Jon Radulovic (NHPCO) and Melissa Delacalzada (@mdelacalzada) (San Diego Hospice) I will be bringing the Palimed 'P' stickers and flyers for you to take home for you to continue our reader supported awareness initiatives.  We are not having a formal Pallimed get-together but who knows what the future may bring!

What do you all like about the various major meetings? Are there any others you would add to this list?

• NHPCO MLC
• NHPCO CTC
• AAHPM/HPNA Annual Assembly
• CAPC 
• International Congress on Palliative Care (Montreal)

Should we cover these meetings in more depth? Or less? Do you want to volunteer to cover any of them?

Photo credit: Flickr user Geoff Livingston

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The National Hospice and Palliative Care Organization and it's sister organization the Hospice Action Network are hosting Hill Day in Washington DC on April 6th where they lead hospice advocates from all over the country in meeting with government representatives to talk about the role for hospice in the continuum of our nation's health care delivery system.  They bring the stories and the data to appeal to both sides of the political brain and are meeting with both major parties.

The events started today with strategy sessions to make sure the advocates were prepared with the facts and how to make the most effective use of their time.   I have never attended Hill Day but would invite anyone who is attending this year or the past to write a guest post for Pallimed to recount your experience.  Activities like this are so important as anyone who has heard Diane Meier speak recently about her experience in Washington DC.  Her discussion about optics and the view from the Hill centers around the revelation that comments and public input really do matter despite all the cynicism in the world about American politics.
But you may be thinking, 'But it is too late for me to attend Hill Day 2011, maybe I'll do that next year...'  That is a great start but I am telling you it is not enough to put this off.  You can actually act now and here are just a few ways you can help amplify the voices tomorrow for the future of hospice:

• Write your Congressional representative (using NHPCO's CapWiz system is easy)
• Donate to the Hospice Action Network (it takes staffing to make this all happen)
• Pledge with a friend or colleague at work to do some of the items in this list
• Follow @HospiceAction on Twitter and re-tweet and reply to posts with #HillDay11
• Friend Hospice Action Network on Facebook and engage/support/like their posts (Let's see if we can get them over 5,000! They are at 4,583)
• Make a meeting today with your local government representatives to make sure they know hospice matters
• Ask your company what they are doing to encourage staff to participate in advocacy
• Ask your hospice and palliative peers what you are all going to do for Hill Day 2012
• And you can watch the pep rally/kickoff for Hill Day 2011 on Ustream live at 9am ET to get in on the excitement of legislative advocacy!

And in the Pallimed spirit of asking you to do things I would do myself...

I already sent a letter to Pat Roberts and Jerry Moran (Senator from Kansas) and Kevin Yoder (Congressman from my District); Donated $30 to the Hospice Action Network; Told you about HAN; Have followed HAN on Twitter and RT a #HillDay11 post; Friended on Facebook and engaged; And pledging to you to talk to my company, local peers, and local government in the next month about hospice advocacy.  (
Total time 15 minutes.)

Now imagine if the nearly thousands of hospice and palliative care staff out there would all do any part of this.  What an impact that could be!

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Meghan O'Rourke wrote a great series of articles on grief for Slate Magazine in 2009 that will soon be part of a newly published book, The Long Goodbye.  The articles were featured on Pallimed when they first appeared and a worthy read when you get a few moments.

At the end of March, Slate published a survey asking about grief experiences.  30 questions with plenty of open ended answers.  The post already has plenty of comments which seems ripe for a dissertation or at least a letter to the editor.  Wondering what type of research this would be and why no one is publishing 'Qualitative analysis of readers comments to online article about grief.'  Regardless...I just wanted to point this out to say there are good journalistic sources out there tackling the tough issues to really subvert the notion that we are a death-denying culture.

Photo Credit: From Slate - unknown attribution

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The lead research article in the current issue of the American Journal of Physical Medicine and Rehabilitation is Inpatient Rehabilitation Improved Functional Status in Asthenic Patients with Solid and Hematologic Malignancies. It was written by a team from the Department of Palliative Care and Rehabilitation Medicine and the Department of Biostatistics at the University of Texas, MD Anderson Cancer Center. This study sought to compare functional outcomes in asthenic patients with hematologic malignancies with those of asthenic patients with solid tumors after inpatient rehabilitation.

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Hopefully many of you realized the 5 posts on April 1 were of the joking variety.

QuickMed Inc. Launches New Palliative Service: Scoops of Compassion
Reluctant Oncologist Finally Embraces Alternative Medicine
Three additional specialty boards are long shot to co-sponsor Hospice and Palliative Medicine
BREAKING NEWS: Specialty now known as Hospice, Palliative Care and Puppies
New Demonstration Project Proposed for CMS by Fringe Medical Group

Thanks to Drew, Suzana, Brian, Lyle, Holly for their contributions (in no particular order).  And a big thanks to Abe R Feaulx for his crack reporting.  We may ask him back next year.

Interestingly, I had some comment son Facebook about a dermatology doctor who is doing his palliative care fellowship, the effective use of pet therapy and more.  So maybe there is some truth in the humor.  Out of curiosity: Did any post get you going for longer than the others?  What was your realization point?

Brad Stuart at GeriPal also had fun with April 1 and they actually got someone else fired up enough to write a post on another blog to rebut the April Fool's post.

And apologies for the double mailing.  That was not part of the joke, but a technical error on my part.

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Palliative Care Grand Rounds has been on hiatus for the past few months but will be coming back strong with the best of blog posts on hospice and palliative medicine.  This is a great way to showcase all the different voices out there and hopefully to encourage more people to participate with the ongoing recognition for their efforts.

Stay tuned for the new debut this Wednesday!

If you blog and are interested in hosting please email christian@pallimed.org to sign up for an upcoming month.

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(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

by Abe R Feaulx, Pallimed Special Reporter

Today the Center Opposing Medical Ethics Or Normalcy offered their proposal for a new demonstration project for the Centers for Medicare and Medicaid Services.  The demonstration project (if accepted)  will be requiring all Medicare participants' primary care physicians to certify that their patients will have a prognosis of 6 months or more in order to continue to receive curative care. A representative of COME-ON, who spoke to the national press on conditions of anonymity stated these measures "sound crazy but look what we imposed on hospice and this may keep those who are really sick from screwing the system."

Primary care physicians have initially responded with outrage stating that prognostication is an inexact science and that these requirements would be onerous and unfair to patients, but these concerns have largely gone without response. The same source was quoted as stating, "We all want excellent health care for ourselves and our families, but we want to make sure that we aren't paying for all those other people. This is the next step to ensure that our tax dollars are well spent."

This requirement is being considered after a small pilot project showed an 98% reduction in costs. In the pilot, only 0.3% of beneficiaries were deemed eligible for curative care. In order to qualify for curative care, a physician must demonstrate that the patient does NOT have a chronic or terminal illness and will live for at least six months. The physician must account for potentially unforeseen events. Upon review of claim denials, the most commonly seen reasons for denial were:

• “It is not clearly demonstrated that the patient is not at risk for electrocution from a lightning strike. This remains a risk factor for death in the next six months.”
• “It is not clearly demonstrated that this patient will not be a victim of a terrorist attack. The Homeland Security Advisory System level is yellow indicating an elevated risk of terrorist attacks. This remains a risk factor for death in the next six months.” 
• "It is not clearly demonstrated that this patient will not aspirate on popcorn while watching a movie with his children. This remains a risk factor for death in the next six months."
• "It is not clearly demonstrated that this patient will not have a stroke or fatal seizure while listening to "Friday" by Rebeca Black This remains a risk factor for death in the next six months."

The pilot received mixed reviews from  beneficiaries. Farmer Willie Simpson indicated that he was pleased with services that he received for his coronary artery disease and diabetes until he required a hospitalization for chest pain. “When I arrived at the hospital, I received notification from the social worker that my claim for the hospitalization would be denied because the ambulance ride placed me at risk for a fatal motor vehicle accident. I don’t know how else I would have come into the hospital, though. My farm is 30 miles outside of town and I don't own a car.” He received a $20,000 bill in the mail the following week.

The CMS requirement that hospice providers see patients every two months to certify that those who live more than 6 months are, in fact, still dying, is still in effect.

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(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

by Abe R Feaulx, Pallimed Special Reporter

Due to years of trying to explain what palliative care is, how it is similar yet different from hospice and that the skill set of doctors, nurses, chaplains, social workers and other professionals extends far beyond the last few weeks of life, the organizing body Association of Palliative Realists Interested in Looking For Unified Language declared the new name for the field "Hospice, Palliative Care and Puppies."


Spokesperson and CEO for life of the Association of Palliative Realists, Frank Drebin said at an April 1st press conference, "One of the hardest things to do is get a palliative care team access to the patients that need them the most.  Members of our think tank discussed all the things that are universally loved and accepted without question to see if we could co-opt these values."  Mr. Drebin cited the hard work of Dr. Barry Rumack in coming up with the key ingredient.

"It was during a particularly difficult airplane flight, that I began to think of a few of my favorite things," shared Dr. Rumack.  "Frankly not being much of a fan of whiskers on kittens, I thought puppies would be a good fit.  Everyone loves a puppy.  Even the ugly ones like...what are they called, Pugs?  Who came up with that name? It even sounds ugly. We won't have any ugly or sad looking puppies in any of our training programs, you don't have to worry about that.  Anyway, where was I...we knew it has been so difficult to convince doctors and patients that a service focused on people would be beneficial.  Our past efforts to come up with slogans all seemed to fizzle despite the wonderful potential.  Some of my favorites were:

• "What time is it?  Who cares? The palliative care team is here and we give you all the time you need to feel heard." (that one was hard to get on posters and business cards)
  
• "Palliative care! Gesundheit!"
  
• "Do you need a pal? Call your palliative nurse!"
• "Palliative Care: Have it your way!" (Apparently, Burger King got this one trademarked one day before we did)
  
• "Hospice: so cool, it's got ice in the name!"
• "Palliators to the rescue!" (I remember we got Stan Lee to draw some comic books for this but it didn't take off.)
  
• "Palliative Medicine: So hip and fresh, they have blogs!"

Frank Drebin thinks this new name for the field will help avoid any misunderstandings.  "People like puppies, people like being heard, people like having their suffering relieved, now we can do all three."

Happy April Fools 2011 from Pallimed

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(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

FOR IMMEDIATE RELEASE: ABMS announces unlikely to be successful applications to co-sponsor Hospice and Palliative Medicine by additional specialties.


Chicago, TX April 1, 2011

Reported by Abe R Feaulx, Pallimed Special Reporter

At a hastily-called press conference, the ABMS Council on Curious Announcements exclaimed doubtfully that three more specialty boards have now applied to co-sponsor HPM. These applicant boards are: the American Board of Ophthalmology (ABO), the American Board of Dermatology (AMD), and the American Board of Preventive Medicine (ABPM).

Dr. Shemp Howard, a spokesperson for the council stated the applications were welcome, but did wonder aloud about what these specialties have to do with dying patients. Dr. Brian Regan, a representative of the ABO, was first to jump in with the comment that, "There are ocular manifestations of a wide spectrum of systemic diseases, including life-limiting and life-threatening disease, and everyone knows that the eyes are the windows to the soul, so we thought we should be involved."

Flint, MI physician Roger Moore, MD, the representative for ABPM, which certifies Occupational Medicine physicians, commented that "In the current economy many patients with life-limiting and life-threatening illnesses, and their family members, often have to work right up until the end. We are uniquely positioned to help and support these patients, and family members maintain their productivity in the workplace."

The representative of the ABD, Dr. Stretch Armstrong added that, while often overlooked, the skin is the largest organ, and that skin failure was under-recognized as a contributing component of the dying process, and offered that cosmiceuticals as well as laser debridement and tattoo removal could go a long way toward addressing existential distress for some seriously-ill patients. Plus, we were told that there aren't any emergencies in hospice." Spokespersons for the current HPM co-sponsoring medical boards were not present at the press conference, and none had responded to requests for comment by press time.

Happy April Fools 2011 from Pallimed

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(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

by Abe R Feaulx, Pallimed Special Reporter

Melinda Ungbauer, a local accountant who has been battling cancer for 5 years, is delighted that her oncologist is finally embracing complementary and alternative medicine (CAM) because it was the only way Ms. Ungabuer could get the hospice referral she has been asking for. "When he told me that she wasn't going to give me any more chemo, and was instead finally OK with a therapy I told him about called 'hot spice,' I was delighted."

Ungbauer has been trying to get her oncologist Dr. Don T Pheelgud to refer to hospice for months now.  But she finally figured that he would be ok with a treatment if she told him it was CAM since he recently supported her use of aromatherapy, acupuncture, and immune-boosting nutritional supplements for a few weeks now.  "Until recently he would only recommend more surgery and then more chemotherapy.  Hospice was out of the question as far as he was concerned.  But he was willing to give 'hot spice' a chance once I convinced him it had good evidence for quality of life in patients with treatment-refractory cancers."

Despite Dr. Don T Pheelgud eagerness for trying 'hot spice', he has been perplexed by others' lack of enthusiasm.  "I spoke to my nurse about this 'hot spice' Melinda keeps talking about.  My nurse seemed sad but she thought it was the right thing to do.  I am trying to get someone to answer me what a hot spice nurse is and what she does, but there's not even anything about it on the internet. And I know how to use Google and Yahoo!" exclaimed Dr. Don T Pheelgud.

"Apparently this 'hot spice' nurse said she'd come to Melinda's house and help her feel better, which sounds great - who wouldn't want that. But how the spice works into this no one can answer me,"

Happy April Fools 2011 from Pallimed

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(We hope you enjoyed our April Fool's jokes this year. Look for more of our past April Fool's posts here. - Ed.)

A renovated classic