Mastodon 09_02 ~ Pallimed

Friday, February 27, 2009

George Mark Children's House Facing Financial Crisis

The George Mark Children's House is the first dedicated pediatric inpatient hospice facility in the United States and is feeling the echoes of the financial crisis. They were recently featured on the local news and are asking for donations and broader support for their programs. I remember going to see Christy Torkildson, R.N., P.H.N., M.S.N. present about GMCH in New Orleans at the 2006 AAHPM/HPNA Annual Assembly and was very inspired what they had accomplished. They have taken on an important task and have done well for over a decade until now.

Pallimed has no affiliations with GMCH, but would encourage you to visit the George Mark Children's House website and learn more about the struggle the organization is facing.

Friday, February 27, 2009 by Christian Sinclair ·

AAHPM/HPNA Annual Assembly Preview:

Austin Mini PlanetImage by Hi I'm Santi via Flickr

(In 2007 and 2008 I posted previews for the AAHPM/HPNA Annual Assemblies. I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to comment on which sessions you are excited about. If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk. There are some good ones!

This year the Annual Assembly is in Austin, TX from Wednesday March 25th until Saturday, March 28th.)

(Previous posts - Conference Overview, Wed Pre-Cons - AAHPM, Wed Pre-Cons - HPNA, Thursday)

For the rest of the days of the conference I am not going to mention every single talk but point out what I feel are the highlights of the day, or if I just want to make a silly/witty/whatever comment on a particular title.

Opening Plenary
Palliative Care Development in Africa at a Glance
Faith Mwangi-Powell, PhD, African Palliative Care Association
Lisa’s Story: The Other Shoe
Tom Batiuk

For a good exercise in appreciating the different challenges palliative care faces, try thinking outside your own institution and the cries of 'how come the oncologists don't refer to us?' or 'We need another social worker and nurse to truly do great palliative care.' Instead imagine trying to do palliative care in a country that may not have ready access to opioids or inpatient hospice units. The African continent has two prominent groups supporting palliative care growth: Foundation for Hospices in Sub-Saharan Africa (FHSSA) and
The African Palliative Care Association, which will be featured in the first half of the opening plenary.

Tom Batiuk is the comic strip creator of Funky Winkerbean and is best known in medical circles for occasionally featuring his characters taking on tough real life issues such as: teen pregnancy, depression, dyslexia, and alcoholism among others. His best known topical work is about a character named Lisa who develops breast cancer and whose storyline has been compiled into two books: Lisa's Story and Lisa's Story: The Other Shoe.

National Consensus Project Constance Dahlin, MSN ANP RN ACHPN, Massachusetts General Hospital

The National Consensus Project is a huge undertaking by the AAHPM, HPNA, CAPC and the NHPCO to develop guidelines for Quality Palliative Care programs. Anyone who is starting a program or currently working with one should be familiar with these guidelines and the eight domains covered. I am not sure what will be covered during this session: a review of the project, a discussion on implementation, a look forward at how these guidelines will be incorporated into organizational/accrediting policies. Regardless, the project is a structural cornerstone for organizing palliative care services.

How Sweet It Is! Management of Diabetes at End of Life
Daniel Cogan, NP
Margery Kirsch, MS RN CDE
Visiting Nurse Service of New York Hospice Care

Excellent topic that is the cause of many discussions in a hospice team meeting. How best to stop or taper insulin regimens? How to commend the years of exactitude in controlling blood sugars and at the same time inform a patient that it doesn't matter anymore? I am not aware of any key articles covering this topic so I hope these presenters point us to some good literature or maybe codify their talk into an article!

Evidence-Based Medicine and Research Challenges in Terminally Ill Patients
Amy P. Abernethy, MD FAAHPM, Duke University Medical Center
Janet H. Bull, MD, Four Seasons Hospice & Palliative Care

Obviously Dr. Abernethy, the editor of PC-FACS, is well-heeled in evidence based medicine as she has much to draw from with this talk. How to cram or connect EBM and research challenges is a tall order for a talk and I am curious of the angle the speakers will take. Will it be about extrapolating research on non-dying patients, like I had to do for a recent talk about managing thromboembolic risk in palliative care patients? Does it echo similar themes from the above diabetes talk? I am excited to see!

Preventing Stress and Burnout in Palliative Care Providers: The Meaning of Self-Care
E. Alessandra Strada, PhD, Beth Israel Medical Center

Self-care? How do I know thee? Let me count the ways. I hope this talk goes beyond the classics of self-care such as taking time for oneself and talking with other peers about the stress. Self-care covers so many constructive and destructive activities/thoughts and has many cultural, professional and gender influences. I enjoy talking with my colleagues about things they do to recharge because it gives me new ideas and lets me get to know the people I get to work with.

A Parallel Process of Palliative Care for the Upstreaming Palliative and Hospice Care from the ED: The BriefPal Program
Myra Glajchen, DSW, Beth Israel Medical Center

BriefPal. Clever nickname. The emergency department is an area with a great need for rapid response palliative care. Some of the difficulty may come in staffing a service 24hrs, but even if you had ready phone consultation and pallaitive care admitting privilages you could quickly make some new friends in the emergency department.

Business Meeting
If you have never gone to the business meeting for the AAHPM, I highly recommend it. It does have potential to be a little dry with all the financial info, but it is a good way to get a feel for how our field is moving and to understand where all your dues go!

CMS Action Update: Know the Issues, Risks, and Opportunities
Diane Meier, MD, Hertzberg Palliative Care Institute, Mount Sinai School of Medicine
Lynn Spragens, MBA, Spragens and Associates, LLC

I want to know how Diane Meier does it. Her brain has to be huge or maybe she just switches one out when she needs to know a different topic. CAPC, Medicare, Professor, Director of a Palliative Care Service. No wonder she received a MacArthur Genius Grant. I hope she gets some standing ovation for that. If you go tyo any of her talks this year, please stand up and mention this during the Q&A session so everyone can show her some appreciation for her outstanding contributions to the field.

Oh and this topic is going to be VERY VERY IMPORTANT!

Does Breathing Equal Living? When Does Respiratory Care Become End-of-Life Care for Children and Adults with Neurodevelopmental Impairment?
Julie M. Hauer, MD, University of Minnesota Children’s Hospital
Janet Duncan, MSN CNP

Provocative title! I wish there was more extension of palliative care philosophy into pediatric and especially neonatal fields. This is an area of great need but may have cultural challenges preventing deeper penetration, much more difficult then partnering with oncology or ICU's. Support your local pediatric palliative care and hospice programs!

6–7 pm Service of Remembrance and Celebration

What a great great idea for any medical conference, not just one about hospice and palliative medicine. NHPCO does this as well with the Clinical Team Conferences. Feel free to comment if you know of another conference where this occurs. I would imagine the attendance may be sparse with other medical fields
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by Christian Sinclair ·

Dethmama Chronicles

A quick reminder about Palliative Care Grand Rounds from the next host, Dethmama:

Palliative Care Grand Rounds, Vol. 1, Issue 2 will be held at Dethmama Chronicles on Wednesday, March 4th. The deadline for submissions will be at midnight, Sunday, March 1st (that's midnight, wherever the heck you live, before the Sunday paper hits your driveway).

The subject matter of this blog carnival can cover anything related to death and dying, hospice and palliative care, grief, care giving, business, legal and ethical issues etc. Send a link to your submission to dethmama at g mail. com. If you run across any blog posts that you feel PCGR would be interested in, please bring it to my attention.
Dethmama, Dethmama Chronicles, Feb 2009

by Christian Sinclair ·

Wednesday, February 25, 2009

Pall-Pourri: quality, stroke prognosis, rational prescribing

JAMA continues its Perspectives on Care at the Close of Life series with one on referring patients to high quality palliative care at the end of life. It focuses on the referral process, clinician interaction with palliative consultants, and discusses recent efforts to better define and measure quality of care delivered by palliative care and hospice programs. Like all the PCCL articles it is a relatively chatty discussion and literature review: what I appreciated about this one is that it is a realistic and understandable discussion about the similarities & differences between hospital-based palliative care and hospice programs and would make a useful & safe reference/teaching/marketing tool for those with colleagues who, umm..., still don't seem to get the differences ('we can't get palliative care involved - she still wants treatment').

Minor point/unveiling of my ignorance: the table mentions that mean length of stay in hospice in the US is 2 months with median of 21 days. I had it stuck in my head that the mean was in the 2-3 week range. There is no citation for that figure - please leave a comment if you know where the latest figures are.

Stroke has a paper which gives some general prognostic data on intracerebral hemorrhage. The data come from a prospectively gathered, regional (Italy) stroke registry, and involves following 588 patients with ICH (mean age 74 years). Gross mortality was 35% at 7 days, 50% at 30 days, and 59% at 1 year. This paper offers confirmatory evidence that posterior fossa hemorrhages portend a significantly worse prognosis (hazard ratio for death at 30 days was 1.7; gross rate of mortality was not given). I had not seen hard numbers like this before, and the authors caution that these mortality rates are higher than what has been previously reported, perhaps due to the older age of this cohort.

Clinical Therapeutics and Pharmacology has a paper discussing rational prescribing for patients with limited life-expectancy (free full-text available). It's a mostly theoretical discussion, arguing for a consistent approach which balances benefits, risks, goals, life-expectancy, and time to expected benefits. A good introduction to the topic - teaching file sort of stuff. The image is available is an actually readable size in the original paper.

(From Dr. Lyle Fettig's delicious link-pile.)

Wednesday, February 25, 2009 by Drew Rosielle MD ·

Not Safe For Work

Two media items, neither particularly 'safe for work' viewing.

First is a story from The Moth (a live performance series involving writers/comedians/etc. telling unscripted stories from their lives). The piece of interest can be found here (this will bring up a streaming audio version of it; you can also find it in podcast form on iTunes; if you're having trouble with this try this page and scroll down to Mike Destefano: Franny's Last Ride.) The story - Franny's Last Ride - is an emotional, angry, at times funny, and very personal telling of this man's loss of his girlfriend from AIDS - her story going in and out of hospice care, what it was like to be a couple of young 'junkies' in hospice care, etc. Full of profanity, so be warned.

This is off topic, but I've become quite enamored of this Podcast of late and I highly highly recommend this story: one of the funniest things I've ever heard.

The Onion has posted a video news story: Courageous Man Refuses To Believe He Has Cancer. As is usual with The Onion it's insensitive, horrifying, spot-on, and hilarious. I don't think it quite lives up to the subversive glory of this one however (see my comments on it here).

"If I listened to those doctors, I'd probably be in a hospital bed right now."

Courageous Man Refuses To Believe He Has Cancer

by Drew Rosielle MD ·

Monday, February 23, 2009

The Terrible Choice

JCO has a provocatively titled research paper (see blog post title) comparing patients' need for hospice services with their willingness to sign-on to hospice care. It's related to this paper I blogged on earlier (scroll down to #4; both are written by the same group and appear to be based on the same data set).

The study involves interviews with 300 patients (mean age 58 years; 27% African American) with advanced cancer, all receiving some sort of anti-cancer treatment, and all of whom had to have a 'likely less than 6 months' prognosis (if they didn't receive any further cancer-focused life-prolonging treatments): ie these were patients who were potentially hospice-eligible. No patients were receiving home services at the time. They were asked, among other things, to rank the importance of/their perceived need for certain core hospice services (nurse visits, chaplain, home health aide, counselor, respite care - these were not labeled as hospice services) as well as asked about treatment preferences.

One key point - when they looked at who were the people who reported the most perceived need for hospice services, they looked at who were eligible for hospice care based on treatment preferences. They defined these patients (again, all of whom had less than 6 month prognoses without further treatment) as those who said they would NOT want any anti-cancer treatment even if it meant that it would guarantee them an 'almost 100%' chance of surviving 6 months. Ie - those who would reject all life-prolonging treatment and are therefore eligible for hospice care based on goals (as well as prognosis based on the study's inclusion criteria). Notably, 13% of these patients (all of whom were receiving anti-cancer treatments) said they would not want any treatments even if it meant a guaranteed 6 month survival. This suggests that these 13% were receiving treatments they didn't actually want, thought they were receiving curative treatments, didn't understand the research questions, or some combination thereof. (I'll also add that they asked patients if they'd want anti-cancer treatments even if it wouldn't change the fact that they'd have an 'almost 0%' chance of 6 month survival - I'm curious as to whether anyone said yes to that. Ok well I know people said yes to that question, but I'm curious as to whether enough of them said yes to warrant an analysis of who these patients were and how they did).

Anyway, they found 1) perceived need for hospice services had no relation to eligibility for hospice, as defined above, 2) the group who ended up dying during 6 months of follow up (15%) actually did report increased need for hospice services, 3) African Americans, patients with poorer social support, and patients with worse psychological symptoms all reported increased need for hospice services, and - likely related to #2 and #3 - 4) patients with activities of daily living dependencies reported increased need for hospice servies (as did their family members).

In short: hospice eligibility and perceived need for hospice services don't seem to line up very well, and instead being sicker and more debilitated with less social support identifies patients who want hospice services (if not hospice care itself). Part of the authors' discussion of this centers around questions of justice related to the Medicare hospice benefit: patients are excluded from hospice services not due to a lack of need for them but due to ineligibilty due to treatment goals/preferences. Thus, the 'terrible choice' of the title. Need, they argue, should be the criteria for benefits, especially since there is no Medicare-defined equivalent treatment 'package' alternative for patients ineligible due to goals.

Fair enough, but compare this to the previous publication from this study that I linked to above, in which it turns out this same set of patients actually ranked, overall, the hospice-type services as pretty low, as compared to non-hospice services like dependent care support, help with transportation, and family care-type programs (financial support for family members to care for them)! Given that, I'm not so sure that the Medicare-defined hospice benefit is the problem per se (it has problems to be sure, but I don't think it needs to meet all the supportive care needs of all patients even with short prognoses), but that there is not any coherent, national 'package' or program of care and assistance to patients with advanced illnesses who are not yet in the final stages of life (the homebound, weeks to few months stages). And given that in the US the simple act of a Presidental candidate mentioning that it might not be the worse thing in the world to tax the rich a little more in order to help the poor was a media event involving a mad screaming chorus of Socialist! I have a hard time imagining unfortunately that we are about to embrace such 'welfare state' programs like family members getting financial support to care for a loved one at home....

ResearchBlogging.orgD. J. Casarett, J. M. Fishman, H. L. Lu, P. J. O'Dwyer, F. K. Barg, M. D. Naylor, D. A. Asch (2009). The Terrible Choice: Re-Evaluating Hospice Eligibility Criteria for Cancer Journal of Clinical Oncology, 27 (6), 953-959 DOI: 10.1200/JCO.2008.17.8079

Monday, February 23, 2009 by Drew Rosielle MD ·

Prognosis of persistent delirium

It seems that 'persistent delirium' is becoming an increasingly investigated syndrome (see recent post on this here).

JAGS has another paper about the natural history of persistent delirium. The study uses data from a prospective delirium abatement trial and looks specifically at patients (n=412 for this analysis, mean age 84 years, ~38% with baseline dementia) discharged from hospitals to other care facilities (basically nursing homes/subacute facilities). All subjects in this analysis were discharged to a facility with delirium. 1 year overall mortality was 39%. Of those alive at 6 months, one-third still had persistent delirium (it's unclear to me how this was actually defined in the study but these patients at the very least had persistent cognitive impairments which did not exist prior to the index hospitalization). Persistent delirium was an independent risk factor for death, and the survival curves converged significantly for those patients whose delirium resolves vs. those who didn't. Again, the overall 1-year mortality was a dismal 39%, and still about 1-in-3 patients whose delirium actually resolved had died by the end of the year: persistent delirium is a very poor prognostic sign.

by Drew Rosielle MD ·


The Journal of Vascular and Interventional Radiology recently published an observational study on the use of permanent drainage catheters for malignant ascites. (It specifically looked at the PleurX catheter which is also frequently used for pleural effusions). The study gives a general sense of the tolerability of the procedure, as well as some gross prognostic data. It involves 34 patients all of whom had had at least 2 therapeutic paracenteses within a month and who reported relief of symptoms after paracentesis. 50% of the patients had died by 30 days, which is unlikely to be a result of the catheter, and more likely an indication of what a terrible prognostic indicator refractory/recurrent malignant ascites is. 85% of patients had no (even minor) catheter interventions before death or the end of the 12 week observation period.

BMJ has a metaanalysis looking at randomized controlled trials of acupuncture vs sham acupuncture vs no acupuncture, concluding that kinda maybe sorta there is a small demonstrable benefit of active treatment over sham/placebo-acupuncture.

JCO has a look at who gets referred for specialist psychooncology services in a cancer center.

JAGS has a paper looking at functional trajectories in older patients admitted to a nursing home after a hospital stay. It provides some supplemental data to some other research I blogged about recently about the prognostic implications of older patients acquiring new disabilities after an acute hospital stay. This paper looks at the natural history of being admitted to a nursing home with new disabilities after an acute hospital stay and finds that, overall, most patients either don't return home or do so with persistent disabilities (that is - they don't return fully to baseline) unfortunately. This new paper does present some mortality data but it's buried in the text in a not-very-helpful way (just because I'm interested in the mortality data doesn't mean the writers and reviewers were I guess). For example, they have a category in their analysis of 'stays in nursing home with continuous disability;' in the text they report that, for instance, 70% of the patients who stayed in a NH for at least a month with who they classified as having 'continuous disability' actually died in the NH without making it home.

by Drew Rosielle MD ·

Wednesday, February 18, 2009

Twitter for Hospice & Palliative Medicine

You may have heard of this thing called Twitter. Or you may not have heard anything about it.

Basically Twitter is a microblogging service accessible from the Twitter website, computer desktop or mobile phone.

For a quick primer check out the video below (email subscribers click here to see video):

Or this slideshow on how Twitter changed someone's life:

I have been experimenting with how Twitter may work for Pallimed and found one particular aspect of Twitter helpful even for non-Twitter users: the Twitter search function.

This is a great insight to hear what people are saying about topics important to you. Your field, your business, your name, a movie, a book, anything. Most Twitter postings (called "tweets') are public and the search gives you a quick feel for what people think.

For example here are tweets with the word 'hospice' in them (one with a 'dirty' word - you have been warned):

Bretonia: Just finished writing a 10 minute speech for a local hospice. Sure could use a good joke about death or dying that's not tooooooooo dark.

CommuteKim: gang-anyone who likes flowers, dm me on location for "Friends with Flowers" a non-profit serving hospice patients. SOOOO many flowers!

dhmspector: Bleh. Rough day seeing mom in hospice: at Bittersweet on college ave getting brownies to make myself feel better.

jimmiekersh: Update M-I-L: Her blood pressure for the last 10 hours has been in the range of 70s-60s over 30s-50s. Hospice Nurse if coming out now.

DeSean77: Day 3 of my hospice experience I learned that people live a life time and never feel like they really been heard. I let em know im all ears

lrice: : Sitting hospice vigil with my father. It's a sad, difficult, yet grace-filled time.

Hezra: well, no throwing up, dad is doing pretty well.Home. my moms brother in lawa just found out he has cancer all over. hospice is moving in.

jsmithready: @writerstephanie We have a closed-off guest room, aka, "The Plant Hospice."

TrinitynScotlan: hopes aunts move to hospice goes well.. considering its hospice :)

jimmiekersh: Update M-I-L: Hospice told us that we can prepare for her death no later than Tues and possibly tonight. Our hospice friends are great.

sShap: (expand): hospice accepting comic books. This should be a national thing.

mslaura: She's gone. Hospice failed to show up with more morphine today, so it was a painful and agonizing death. Fuck. She did not deserve that.

kevhw: sad because a lovely man i knew pretty well died in a hospice yesterday
You get so many different perspective about hospice and how people are coping around their loved ones in hospice. Volunteers for hospice seem to be popular users of Twitter also.

Try typing in palliative care or the name of your hospice. There are even job listings for hospice positions on Twitter. If you are on Twitter feel free to tweet or follow me at 'ctsinclair' or 'Pallimed.' Other good hospice related Twitter users include: lesmorgan, SanDiegoHospice, HospiceChicago, palliativecare, Dethmama,

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Wednesday, February 18, 2009 by Christian Sinclair ·

Monday, February 16, 2009

HPM Issues 2009:
#1 The Economy's Effect on Hospice & Palliative Medicine

(This is the last in a series of 5 posts (#5, #4, #3, #2) about issues in hospice & palliative medicine I think will be important in the next year. Feel free to disagree!)*

#1 The Economy's Effect on Hospice & Palliative Medicine

The economy is in the tank, people are losing health insurance when they lose their jobs, people are cutting back on accessing health care. With hospitals potentially seeing less patients and having to possibly cut back on services would palliative care consult teams be near the top of the list? By our own success we have been defined as cost-savers and quality-raisers both good things to a hospital administration, but when your team is not considered as a revenue center your ability to be let go becomes easier. Well maybe not you, the doctor, but maybe your admin support, or your chaplain, or your social worker gets 're-purposed' to case management. Pretty soon your palliative care team may be more of a palliative care duo.

For hospices things could swing many different ways. While recessions have been linked to worse public health and even higher mortality rates so the potential people requiring hospice services may grow. But if these patients do not have insurance and do not qualify for Medicare or Medicaid programs, hospices will find themselves with a higher proportion of charity care and some hospices may not be able to sustain a large shift in payor mix towards charity care. Also many not-for-profit hospices agencies rely on an investment endowment to cover some expenses and with the recent stock market drop (and Bernie Madoff) this could not have happened at a worse time. Publicly traded for-profit hospices (Odyssey and ChemMed/VITAS) may be affected as well with any global stock drop but both are near 52-week highs currently.

There is some silver lining for our field economically given the recent passing of the stimulus bill. The legislative advocacy by NHPCO and others led to the retroactive removal of the hospice wage index reduction until this next October. At that time, I presume it will be reinstated. Is this pork, is this stimulus, is this fair, was this the right place for this issue? We can debate that at the Annual Assembly if you want. Also the stimulus bill contained provisions for Comparative Efficacy Research (CER), which could be applied to many palliative care issues. Which works better methadone vs. oxycontin vs. fentanyl patch for pain? I am sure the research gurus in our field could come up with more ideas and get them funded to advance the science of our field.

And lastly what if the declining economy shifts the way health care is delivered? What happens when hospice and palliative care are not choices selected by patients, but become the non-autonomous 'consolation' prize of health care. 'Thanks for playing!' We may deliver great care to these patients, but if we are the providers of care for those who have no other choice, the risk of being resented and being rebuffed increases greatly, which could have broad impacts for our field.

Monday, February 16, 2009 by Christian Sinclair ·

AAHPM/HPNA Annual Assembly Preview: Thursday

(In 2007 and 2008 I posted previews for the AAHPM/HPNA Annual Assemblies. I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to comment on which sessions you are excited about. If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk. There are some good ones!

This year the Annual Assembly is in Austin, TX from Wednesday March 25th until Saturday, March 28th.)

(Previous posts - Conference Overview, Wed Pre-Cons - AAHPM, Wed Pre-Cons - HPNA)

For the rest of the days of the conference I am not going to mention every single talk but point out what I feel are the highlights of the day, or if I just want to make a silly/witty/whatever comment on a particular title.

Opening Plenary Session: The Nature of Suffering and the Goals of Palliative Care
Eric Cassell, MD MACP, Weill Medical College of Cornell University & Betty Ferrell, PhD RN FAAN, City of Hope

This sounds like a great plenary session to open the main conference. I am very excited to hear these two talk about how people interpret suffering within themselves and see the suffering of others. I have not yet read Cassell's classic 1991 book "The Nature of Suffering and the Goals of Medicine" so if any readers would like to comment on their experience with that book please do. I am sure this talk will make me want to go out to buy it soon after the conference.

Autonomy Run Amok: Refashioning End-of-Life Decision Making
J. Andrew Billings, MD, Harvard Medical School and Massachusetts General Hospital

My peers from Kansas City have all agreed this is the talk we want to go to for the early session. Billings is a great speaker and the theme of autonomy runs through much of medical decision making in palliative care. When autonomy stomps all over other ethical principles the debris left over could be labeled moral distress

AAHPM/PDIA Community Leadership Award Presentation: Pallimed Founder and Contributors:
Drew Rosielle, MD, Medical College of Wisconsin
Christian T. Sinclair, MD, Kansas City Hospice and Palliative Care

What a fascinating pair of speakers! I already know you will be astounded by the verbal gymnastics and striking visual images compiled to entertain and inform. Seriously, we are just very humbly pleased to be formally recognized and would love to see you at the awards ceremony. Yes you have to pay $30 for lunch but we hope to see you there!

Special Interest group (SIG) Symposia:
A Fulfilling Practice in Hospice and Palliative Medicine: How Do
You Get There?
Giovanni Elia, MD, San Diego Hospice and The Institute for Palliative Medicine

One of the first sessions presented by a SIG. This is a great way for the SIG's to get involved and present topics relevant to their membership. This one is really a forum of different HPM doctors talking about all the different ways to be a hospice and palliative medicine physicians. The variety of clinical arenas and involvement would surprise most people outside our field.

Controversies in Forgoing Artificial Nutrition and Hydration in Pediatric Palliative Care
David M. Steinhorn, MD, Children’s Memorial Hospital and Northwestern University
Melody L. Hellsten, MS APRN-BC PNP, University of Texas Health Science Center–San Antonio
Joel E. Frader, MD, Children’s Memorial Hospital and Northwestern University

On one hand an acceptable medical practice for adults should apply in principle to children as well. But what are the issues and qualities of pediatric care that actually change parts of the equation? It cannot simply be surrogate decision making since the same issues apply to patients with dementia or other impaired decision making. But those of us who have worked with pediatric palliative care challenges understand this 'feels' different. I am glad this issue is being explored at this conference.

Update on Palliative Care for Patients with HIV/AIDS: Inpatient, Outpatient, and International Perspectives
Jessica Merlin, MD MBA, Hospital of the University of Pennsylvania
Peter Selwyn, MD MPH, Montefiore Medical Center, Albert Einstein College of Medicine
Rodney O. Tucker, MD, University of Alabama at Birmingham Center for Palliative Care
Liliana De Lima, MHA, International Association of Hospice and Palliative Care
Mimi Rivard, MSN APN, St. Vincent’s Medical Center

I don't have much to say about the talk itself besides noting the diminishing HIV patient population in palliative care arenas with the advent of HAART has made the current crop of palliative care trainees less aware of HIV Palliative Care treatment options. I did want to point out the name Jessica Merlin a ID fellow with a strong interest in Palliative Care who is also the Vice Chair of the Professionals in Training SIG. The fact that she got this talk submitted and accepted with such a strong slate of speakers is impressive for not even really being in our field yet and still an ID fellow. She impressed a lot of people with her energy at last year's meeting.

Working in the World of Chronic Kidney Disease: Where, Oh Where, Is Palliative Care?
Charles V. Wellman, MD FAAHPM
Janice Scheufler, RPh PharmD FASCP
Hospice of the Western Reserve

Any bets on if they will sing in this session? A nominee for best title this year. And a good topic given the seeming conflict between the Medicare Hospice Benefit and the Medicare Dialysis Benefit.

Case Conference I

While a non-descript name, this session and the other three have been a product of the PIT-SIG to highlight rising learners in palliative care from multiple disciplines. I will have an upcoming post featuring the various topics and speakers. Try to get to at least one.

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by Christian Sinclair ·

Email and RSS Readers: Migration Happening Soon

A quick heads up for email and RSS subscribers: Google is transferring our feed to their own servers from Feedburner in the next few weeks (deadline Feb 28, 2009). The process is supposed to be smooth, but one medical blogger has already lost some email subscribers. You should not notice a thing, but if you notice no posts or emails from Pallimed for more than two weeks, you may want to try resubscribing.

Hopefully, this should all go well. Let us know if you have any problems.

by Christian Sinclair ·

Friday, February 13, 2009

Cancer pain intensity and analgesic complexity

ResearchBlogging.orgJournal of Clinical Oncology has an intriguing paper on cancer pain intensity and 'complexity' of cancer pain management. The data come from a prospective, Canadian study of ~600 'advanced' cancer patients referred for palliative care consultation (including inpatient and hospice-based settings). 21% reported severe, at least 7/10 pain, at initial assessment. They defined pain control as pain 3/10 or less and 3 or fewer breakthrough doses for at least 3 consecutive days.

The findings are interesting on a couple levels. First is the natural history data. Median time to pain control was 4 days for patients reporting mild pain at baseline, compared to 22 days with those reporting severe pain. In fact it looks like (I say 'looks like' because this is me eye-balling a Kaplan-Meier curve) there is a group (~15% of patients with baseline moderate or severe pain) who don't achieve stable pain control (as defined above) even after 90 days. In multivariate analysis having baseline moderate to severe pain, suspected neuropathic pain, and age less than 60 years were independently associated with longer time to pain control. Psychological factors, at least how they measured them, did not predict length of time to pain control in the multivariate analysis. Increased baseline pain also predicted increased use of adjuvant analgesics and higher final opioid dose (a median of 72 vs 12 mg of oral morphine equivalents, compared with baseline mild pain patients).

Well, so what? Patients who hurt more need more meds and it takes longer to achieve decent analgesia. On its face that isn't surprising, and could seem to be quite a dull finding. It isn't necessarily however. First off this is supporting data that numeric rating scale reports do tell us something about a group of patients (ie - allow comparisons between groups of patients as opposed to only the strict interpretation of NRS data that they are meaningful only on an individual basis to compare, say, treatment response after initiating a new analgesic in an individual patient). (Yes, this has been a point of some controversy, and the paper's discussion section addresses it further if you're interesting). Second, it's supporting data that for patients who present with severe pain we should not necessarily be 'starting low and going slow' and should in fact be more aggressive. I suspect however that most of us do this anyway because it's, well, the obvious thing to do (much of the time).

Finally, however, I am left wondering about this last 15%: the ones that never achieve good control (at least as defined by the criteria above which has the major limitation of not being based in how patients themselves rate their satisfaction with their analgesia: are they happy with their pain relief? Can they do the things they want to do despite having, say, 5/10 pain, etc.?) Most of us who practice in referral cancer pain settings (that is, for example, an oncologist has to refer a patient to me for pain in order for me to see that patient) tend to get referred the patients with the toughest to control pain syndromes (intolerable side effects, lack of efficacy of multiple agents, etc.). This, then, is a patient population near and dear to my heart, and one that hasn't been studied very closely, but is actually quite central to many of us with referral-type palliative practices. Talking with others about this, it there seems to be a bi-modal distribution of patients with cancer pain: the (thankfully vast) majority who do just fine with all our 'usual moves' vs. the (thankfully) few who don't seem to gain particular benefit (whether it's in pain rating, function/mobility, mood/ability to enjoy life) from most things we do, and often with a tremendous amount of suffering tacked on (not least of which are the side effects from the treatments we prescribe). It's these few I'm particularly interested in - who they are, how we can recognize them early, why they respond differently to our 'usual moves' (yes I'm sure it's a combination of genetic, psychiatric, and otherwise neurobiologic reasons but what exactly does that mean anyway), and what we can do about it (because I wonder if they need a distinctly different approach than running them through the toolkit which happens to work for most other patients)....

So, sure, that was a rambling presentation of some thoughts that have been meandering through my mind lately, but I am hopeful that as our research base matures these questions will begin to get answered.

R. L. Fainsinger, A. Fairchild, C. Nekolaichuk, P. Lawlor, S. Lowe, J. Hanson (2008). Is Pain Intensity a Predictor of the Complexity of Cancer Pain Management? Journal of Clinical Oncology, 27 (4), 585-590 DOI: 10.1200/JCO.2008.17.1660

Friday, February 13, 2009 by Drew Rosielle MD ·

Shall we panic?

Apparently the FDA is planning on undertaking a wide-reaching risk mitigation program for prescription opioids. The press-release implies it's focused on 'working with industry' to ensure their safe and appropriate use. No particular mention is given to working with clinicians and patients, or where their voice will be in all this (although that has been mentioned in other blog posts on the topic).

At this point we know very little about this, or what it will look like, but I am confident anything which smells of further scrutiny will increase the already existent barriers to chronic opioid therapy. I am still waiting for any sort of evidence that inappropriate clinician prescribing (e.g. either reckless or not done with analgesic/therapeutic intent) is a major/systematic contributor to the rise of prescription drug abuse, although if you read the literature many people seem to believe this even without supporting data. I don't want to suggest risk abatement etc. are bad things, of course they aren't, but if not done well/sanely it will be our patients who suffer the consequences.

I am not a policy maven, but know that some pain policy types read this blog and would appreciate any comments, links, or organizing information about this.

If you're interested in some thoughtful common sense about opioids for chronic pain the current issue of Journal of Pain has 3 American Pain Society guidelines about the topic (issue table of contents here, guidelines are towards the top). The one I'd highlight in particular, persuant to the above topic, is the one on research gaps which thoroughly describes just what we don't know.

by Drew Rosielle MD ·

Methadone and the QTc

Annals of Internal Medicine has published consensus guidelines for QT interval monitoring for patients on methadone.

First-off I'd like to commend this paper for containing the following sentence which nearly made me spit my coffee out for its combination of human-non-readable electrophysiology babble with the big reveal that some electrophysiologist somewhere named a a gene 'human cardiac ether a go-go.'

'The most common mechanism of drug-induced QT prolongation and torsade de pointes is blockade of the human cardiac ether à go-go–related gene (hERG), which encodes Ikr, the delayed-rectifier potassium ion current.'
That aside, the guidelines review the history of methadone and QT prolongation/torsades, review the evidence (much of it highly inferential - especially the autopsy series - although some based in prospective studies) suggesting that methadone is associated with QT prolongation (to me this evidence is quite solid) and cardiac arrhythmias and sudden cardiac death (the actual rates of this/clinical relevance of this seems to be completely undefined as of yet).

They go onto make reasonable recommendations, more or less based on expert opinion by their consensus panel. The 100mg/day figure is based, again, on some difficult-to-interpret reports suggesting the risk of arrhythmia is dose-related and most often occurs in patients on over 100 mg daily.

Recommendation 1 (Disclosure): Clinicians should inform patients of arrhythmia risk when they prescribe methadone.

Recommendation 2 (Clinical History): Clinicians should ask patients about any history of structural heart disease, arrhythmia, and syncope.

Recommendation 3 (Screening): Obtain a pretreatment electrocardiogram for all patients to measure the QTc interval and a follow-up electrocardiogram within 30 days and annually. Additional electrocardiography is recommended if the methadone dosage exceeds 100 mg/d or if patients have unexplained syncope or seizures.

Recommendation 4 (Risk Stratification): If the QTc interval is greater than 450 ms but less than 500 ms, discuss the potential risks and benefits with patients and monitor them more frequently. If the QTc interval exceeds 500 ms, consider discontinuing or reducing the methadone dose; eliminating contributing factors, such as drugs that promote hypokalemia; or using an alternative therapy.

Recommendation 5 (Drug Interactions): Clinicians should be aware of interactions between methadone and other drugs that possess QT interval–prolonging properties or slow the elimination of methadone.
They also note that: Panel recommendations are not intended to supplant clinical judgment or patient preferences and may not apply to patients with terminal, intractable cancer pain. I myself tend to get baseline EKGs on patients who I expect have prolonged prognoses (many months at least) but not usually for those closer to death. What data (all observational) we have on methadone in advanced cancer patients has supported its safety.

by Drew Rosielle MD ·

Monday, February 9, 2009

AAHPM/HPNA Annual Assembly Preview: Wed Pre-Conf HPNA

(In 2007 and 2008 I posted previews for the AAHPM/HPNA Annual Assemblies. I started doing the preview because one of my favorite things about conferences is talking to other people to see what they are interested in, so feel free to comment on which sessions you are excited about. If you are giving any of these talks, I encourage you to leave some comments to get more people aware of your talk. There are some good ones!

This year the Annual Assembly is in Austin, TX from Wednesday March 25th until Saturday, March 28th.)

(Previous posts - Conference Overview, Wed Pre-Cons - AAHPM)

Wednesday March 25th Pre-Conference Workshops - HPNA

All Day Sessions (8a-5p)

Generalist Clinical Review Train the Trainer
HPNA certifies educators to help maintain quality education around the country and this is the main avenue for educating the local leaders of palliative care nursing to help build a palliative nursing workforce that will be in more and more demand. The pick for anyone wishing to educate other nursing professionals.

Withholding/Withdrawing Life Sustaining Treatments
This is a perfect topic for an all-day session, but I bet it will be an exhausting one given the subject matter and the medical, legal, ethical and cultural areas to be covered. It is a great addition to have Christy Torkildson to give cases from a pediatric perspective. They even used the new hot phrase in medicine 'moral distress' in the description blurb.

Half-Day Sessions

Through the Looking Glass: Making Sense of APN Billing
Two points for a very interesting title. Negative points will be awarded if Connie Dahlin only uses a couple of cute Alice in Wonderland clip art to decorate her slides. Exponential positive points will be awarded if she ties in the categorization of the Lewis Carrol book as literary nonsense to APN billing or the confusing themes of altered time and space to APN billing. Billing for APN's is an area that desperately needs someone to work towards consistent models across different states. Hello...President Obama and health care reform?

Precise Pharmacopalliation of Advanced Noncancer Illness
Fancying myself a bit of a hobbyist wordsmith, I was enamored by my new favorite medical term, 'pharmacopalliation.' It takes a while to say, type and write, but I am planning on incorporating it wherever I can. Thank goodness this session is not only focusing on which medicines to start but actually discussing when and how to stop medications. Another area the FDA, NIH and others could put a little time and attention to. Hello...President Obama and health care reform? (Can you figure out what the #1 issue is for HPM in 2009 yet?)

Don't Panic! The CoPs are Here! How to Be Sure You Are Ready!
See what I said about the CoPs and conferences? I bet this is a very crowded seminar. And they promise to have a robust question and answer session! They should get a gold star for the title as well. So many different ways to read into it...the whole CoPs and police theme.

Initiating and Maintaining a Palliative Care Service for APN's
I presume this session is talking about palliative care services without doctors, but there may be some great tips for Palliative Care Services even with doctors and APN's. The blurb does not specify which model it is most clearly articulating. The APN's I have worked with over the years have been some of the best clinicians I have ever worked with. I find their role invaluable.

Evening Session

CPC Nurse Workshop - Cultivating Palliative Advanced Practice Nursing Through Mentoring
This was listed under the AAHPM section but I thought I would include it hear for continuity with the other nursing themes. Bold choice of a 6-10pm time, but it is also free and the faculty looks diverse and outstanding so I expect this to be a well attended session.

Monday, February 9, 2009 by Christian Sinclair ·

HPM Issues 2009:
#2 Making Sense of the new Medicare Hospice Conditions of Participation

(This is the fourth in a series of 5 posts (#5, #4, #3) about issues in hospice & palliative medicine I think will be important in the next year. Feel free to disagree!)*

#2 Making Sense of the new Medicare Hospice Conditions of Participation
We have not covered a ton of the bureaucratic and administrative sides of hospice or palliative medicine here at Pallimed. I would recommend the Hospice Blog by Hospice Guy for a sharper focus on such topics (all Hospice Blog COP related posts here). The Conditions of Participation (COP) for the Medicare Hospice Benefit is basically a rule book for how hospices must operate since all hospice derive a majority of their revenue from Medicare. The new COPs went into effect on December 2nd and hospices are trying to best interpret all of the subtle and drastic rule changes that were made.

Thankfully, Medicare did have a period for input from hospice agencies and other advocate groups before publishing the final COPs. It is interesting how many conferences, software programs, and seminars have cropped up to help indicate what kind of demand there is to KNOW that your agency is compliant with the regulations.

Some key quotes from Hospice Guy:

There are regulations in the new COPs that are hard to accomplish (especially for small hospices). There are also some that nobody seems to fully understand. I don't think Medicare even understands what they want us to do for some of them. I have spent the last six months putting things in place, but have been dragging my feet on a couple of issues hoping that Medicare would clarify what, exactly, they want us to do. Those clarifications have not come. Clearly, we can't wait forever.


I do think some of the changes are going to be very hard on small hospices and somewhere near impossible for small rural hospices that cover hundreds of miles of territory. I'm not sure that the provision that each patient must be seen by a nurse, social worker, and chaplain within four calendar days of admission is possible or practical for some of those small rural hospices.
Make sure to read his COP related posts comments from other hospice administrators if this is a topic you are interested in. And contribute if you have a particular view or insight on the COP's

As the new COPs are implemented it will be interesting to see what unintended consequences shake out of the process. Will referring doctors be frustrated by a possible increase amount of paperwork or contact in an effort to better document collaboration with a primary doctor? Will new processes put in place to meet compliance standards result in less time, money and effort directed towards patient care for 'non-essential' (or essential) programs? What will be interpreted as a hard and fast law instead of a guideline as the original authors may have intended?

Time will tell. (Sorry about the cliche. It's getting late!)

by Christian Sinclair ·

Friday, February 6, 2009

Lidocaine patch for cancer surgery pain

Supportive Care in Cancer has published a randomized, double-blind, placebo-patch controlled trial of the 5% lidocaine patch for postsurgical incisional pain in cancer patients. It involved an unfortunately small number of patients (28 randomized, 18 completed the trial) who had greater than one month of pain in/near their surgical site (most had breast or lung surgeries), at least 4/10, and with some 'neuropathic features' (had to have burning, paresthesias, or allodynia). They received active (up to 3 at a time, worn 18 hours a day) or placebo patch each for a month, then switched. The study was powered for 50 patients per arm.

There were no statistically significant differences in pain between groups at any times (reported worst, least, average, current pain intensity) - and even eye-balling the graphs it's tough to say there were consistent trends. Pain interference was modestly (and statistically significantly) improved with the active patch (e.g. interference with work), but that was it. Unfortunately I don't think we can conclude anything from these data. This seemed to be a well-thought out, well-designed study, with reasonable outcomes, but there just weren't sufficient number of subjects to tell a difference. Even in the best studies on the patch (all involving post-herpetic neuralgia) which showed significant improvement in the active patch subjects - the average improvement was modest (in the ballpark of 1.5 points on a 0-10 pain scale) - and one is never going to show a significant difference with these small numbers.

This raises the question - why even pay attention to a symptomatic therapy whose effects are so modest you need 100+ patients to even demonstrate a little improvement? Especially one as costly as the lidocaine patch? Cost concerns aside, I continue to use the patch because 1) it's incredibly safe and well tolerated (no drug interactions or really no demonstrable side effects other than skin stuff), and 2) a small minority of my patients who use it report tremendous benefit - solid pain relief, opioid sparing, etc. etc. (a substantial minority in addition report modest improvements with it). It's possible that the #2 phenomenon is largely placebo (especially since there's yet to be any controlled data clearly demonstrating the patch is beneficial outside of postherpetic neuralgia), and in some ways the lidocaine patch seems to be a perfect storm of a placebo: a prescription-only treatment containing a 'numbing medicine' with fancy packaging that you apply right where it hurts. Sounds good to me. #2 is why I keep using it, but I remain agnostic about what I'm actually prescribing, and I'm curious as to what others think of the patch. From a health-systems standpoint I understand why many insurers and hospices won't use it.

ResearchBlogging.orgAndrea L. Cheville, Jeff A. Sloan, Donald W. Northfelt, Anand P. Jillella, Gilbert Y. Wong, James D. Bearden III, Heshan Liu, Paul L. Schaefer, Benjamin T. Marchello, Bradley J. Christensen, Charles L. Loprinzi (2009). Use of a lidocaine patch in the management of postsurgical neuropathic pain in patients with cancer: a phase III double-blind crossover study (N01CB) Supportive Care in Cancer DOI: 10.1007/s00520-008-0542-x

Friday, February 6, 2009 by Drew Rosielle MD ·

Conflicts over life-prolonging care in NEJM

Last week's NEJM has an all-too familiar case discussion about a protracted conflict regarding life-prolonging treatment in a vulnerable, brain-injured man with a dismal prognosis. A case is presented, followed by 3 different discussants all proposing different 'next steps' (essentially more talk, continue life-prolonging care, or discontinue life-prolonging care). Readers can then vote as to which next step they most support, and add comments. Hundreds have done so, with a lot of interesting, and very wise (mostly) comments.

My own comment (which is now deeply buried) discusses the fact that this occured in a state in which the legal next of kin defaults as the legal decision maker and much of the conflict revolves around this NOK who was legally empowered to be a decision maker for a patient without any evidence that he 1) wanted to be; 2) the patient wanted him to be; or 3) that he was even willing to abide by the most basic of supposedly-valid proxy decision-making principles such as substituted judgment or 'best-interest.' While not having a law or court ruling which delinates who is a decision-maker creates its own set of problems, it seems particularly crazy to me to have laws/court rulings which mandate someone as a decision-maker based on some version of closeness-of-relation, especially given that a substantial minority of patients when they actually designate a health care power of attorney don't even name their spouse! Most do, of course, but some, presumably for very good reasons, would rather have their sister or daughter make those decisions for instance....

Anyway - it's great to see such a case given such prominence in the NEJM - and you can still 'vote' until February 11.

by Drew Rosielle MD ·

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