Tuesday, January 30, 2007
This is the third post in a series previewing the sessions at the American Academy of Hospice & Palliative Medicine's Annual Assembly.
You can see all the posts in the series below:
2/14 - Pre-conferences
2/15 - AM Sessions
Click here for the AAHPM Annual Assembly Brochure 2007 (pdf)
Register soon if you have not already!
Thursday, February 15th - PM Sessions
Well, since I have only heard one of these talks before, I have to give a qualified word of support to Dr. Salacz talk on "Is 'Palliative' Chemotherapy Palliative?" during the first afternoon session. Mike is one of my colleagues here in Kansas City and he is a practicing oncologist trained under Weissman at MCW with a palliative care background as well. I would really like to see more of a knowledge base developed in Palliative Care regarding cancer treatments, because we have many misconceptions about oncology just as they may have misconceptions about hospice and palliative care. We have much to learn from one another.
There are a number of good topics during this session including the update on ALS, and management of dyspnea. I am not familiar with either of those speakers, but those are both good topics. Some hospices do a lot more ALS work than others. And as much of a 'classic' disease (in terms of trajectory, expectations, and palliative care benefits), I have not seen as many ALS patients in my care as much as I have read/learned about them. Similar (but for different reasons) to the HIV population in hospice. They seem to not be as prevalent as they are discussed or studied. That's my experience...what is yours?
And a quick shout out to Peggy Edwards from Hospice of Yuma who is talking on Palliative Care in Nursing Homes with ARNP's. Great topic and sorely needed in our field. Peggy is a great person who I met through the Harvard PCEP course, so I know she has great presentation skills since we learned 'how to teach' from Billings and Block. Anyone else who is a graduate of their excellent two-week course can attest to that.
One of my votes for best topic title goes to "Cachexia: Why Bother?" by Dr. del Fabbro. Classic for the concise and encompassing way it encompasses our knowledge and treatment of cachexia, while still instilling some hope that there is something that can be done about it. I just hope that the talk is not full of false hope as some of the recent studies Drew has pointed to have suggested. The two talks in this session lean towards communication issues, so it really is a take your pick. Although I am not a big policy-wonk, I am curious about the items to be covered in the Palliative Case Management in Medicaid talk. I wonder what angle they are going to approach this from.
Poster Session and Job Fair
It is always fun to go to the poster section and see all of the pilot projects that are out there. A lot of seeds are started here and it is always nice to get around and talk to the folks who put these projects together. I just wish that the posters were not so darn expensive and that the deadline for the poster and paper sessions was later in the year so fellows could submit. It is also very interesting that they are having a job fair. I will be interested to see how that goes. I hope it is successful in matching people up as this is still a small community and our communication (despite our focus on communication with patients) about jobs and prospects is still woefully inadequate.
Tuesday, January 30, 2007 by Christian Sinclair ·
Friday, January 26, 2007
(Image of Salt lake City courtesy of Flickr user - oroooo)
This is the second post in a series previewing the sessions at the American Academy of Hospice & Palliative Medicine's Annual Assembly.
You can see all the posts in the series below:
2/14 - Pre-conferences
Click here for the AAHPM Annual Assembly Brochure 2007 (pdf)
Register soon if you have not already!
Thursday, February 15th - AM Sessions
8-9:45am Plenary Session
Dying with Dignity: A Contemporary Challenge in Palliative Care (101)
Harvey Chochinov, MD PhD FRCPC, University of Manitoba
Dr. Chochinov has written some really wonderful articles that we have blogged about here. He has a very sharp mind when it comes to defining such a nebulous concept as dignity. I have not heard him speak before but am looking forward to his talk, although I can hope to say that it not just a recap of some of his major articles.
10-11am Concurrent Sessions
There are a lot of big names during this time slot (Lyckholm, Von Gunten, Casarett, Weissman, Coyne, Ritchie, Bailey, Teno), but the one that first caught my eye was Heaven and Hell: Understanding Your Patient’s View of the Afterlife by James Scott Boal, MD, Angela Hospice. I have not heard him speak before, but I am curious how he will tie this to patient care. Curiously there was just an article in the Kansas City Star Faith section on denominational differences in the perception of hell.
I am glad to see a session on preparing manuscripts by Von Gunten, Casarett, and Weissman as that may push our field into a more rigorous scientific direction to answer some of these questions that have only had anecdotal questions for so long in our field.
The other talk that I think will have some strong attendance is the one on organ donation by the folks from VCU. There are a lot of interesting ethical issues as well as communication dynamics when organ donation and palliative care come together. I am planning on going to this one to see what processes they propose/use at VCU. One last word to support my peer Laura Morrison (one of the founding PIT-SIG members) who is also speaking at this time. Her talk is about the PACE program for Assisted Living Facilities, but I am more excited about her next talk.
(Note, I will post on the paper sessions later, just the big talks for now)
11:30am-12:30pm Concurrent Sessions
Laura will be talking with Rodney Tucker on Devices at the EOL in Heart Failure in one of the late morning sessions. Laura and I have collaborated on a few works in this area. Unfortunately some have not always taken flight, but I am glad to see her push forward in this field. Obviously as our medical world becomes more technologically advanced, we will always have work to do since the conversations will eventually turn to when is the right time to turn these devices off and how do we do that safely, and with comfort. I just wish that conversation happened when these devices are invented as well. LVAD anyone?
The other talk that looks pretty interesting to me is the one on Pain Research, although I hope it does not get to bogged down in discussions on opioid receptor subtypes in mice, because that will likely lose me pretty quick. Although I am very interested in advancement of pain research, my tolerance for discussing lab results without focus on the clinical picture left me some time in organic chemistry lab in 1994.
The talks on ICU & Palliative Care, and Mental Illness are probably good core talks, likely to be helpful to many, but the talks on Large National Datasets and Federal Regulations leave me guessing how they can fill up so much time. And these two talks probably appeal to the same group of people, so it is too bad they are at the same time. If anyone who reads Pallimed is talking in one of those or is really interested in those talks I would love to hear your opinion.
And again, the above previews express my basic opinion. By no means do I mean to offend anyone if your talk is not mentioned or even slighted. If you feel that I have misrepresented someone or their talk, then please correct me, because the whole point of me writing this is because I enjoy talking with other people at the conference what they are interested in. It is somewhat naive but still amazing to me that there are so many people is this (growing) niche of a field that we could have such a diverse range of topics. So tell me what you like out of this group!
Friday, January 26, 2007 by Christian Sinclair ·
Well if you are not regularly reading this blog (you should be if you are in hospice or palliative medicine...), I figure I can at least get your attention if I put 'sex' in the title of the post.
The Oxford Mail (UK) reports on a recent complicated case at the Douglas House, the world's first hospice designed specifically for young adults. A 22 year old resident suffering from Duchenne's Muscular Dystrophy wanted to have sex before he died. His solution was to find a prostitute since his prospects at developing a loving relationship in such a short amount of time to have a meaningful sexual encounter was unlikely given his condition. He brought his request to the staff and they debated in their ethics committee whether or not they should honor his request. The debate centered on providing for the patients safety and helping fulfill his wishes. They had concluded that he would have to use his own money, it could not be in the hospice house, and that they would have someone present in his home (in a separate room) in case he needed assistance. Sister Frances Dominica made a lot of great comments about the debate on the Douglas House website. Apparently this conundrum is also featured on the BBC2 in a series about the Helen (children) and Douglas (young adult) House. Nick Willis, the patient in discussion even wrote a very mature and important column in the Guardian. He states very wisely here:
Strangely, talking to people - especially parents and carers - about death and dying may be easier than talking to them about sex.
It is a very fascinating read regardless of what you may think about his actions. I must say that this situation has never come up in my career in hospice thus far, but at least now thanks to Pallimed I have at least one case study to refer back to. A final quote from his column:
My experience taught me a lot and gave me a sense of normality to a degree. It also helped me to realise that I could make things happen if I really wanted them enough. But it did not give me what I most want. I continue to hope that I may be able to establish a relationship with the right person. The same as any other "dude", as my older brother Tom would say, I want to be able to hold hands with someone, to love and be loved.
2) A new blog to interest those in the nursing home and hospice world is: Hospice and Nursing Homes. The first two posts look promising. We'll keep an eye on it and post it on the links on the right if the quality continues.
3)I enjoy reading first person accounts of hospice experiences. I like to think it may be a family member of someone under my care and I am getting a glimpse into how they are thinking/feeling. A blogger 'named' Solitary posted a well-written account of her Grandfather's death. I will occasionally post one of these every few weeks if there is something outstanding about the story or writing.
by Christian Sinclair ·
Thursday, January 25, 2007
From the latest Journal of the American Geriatrics Society...
Megace makes you fat and weak. Which is a crude, sensationalistic way of saying that in a small randomized trial looking at muscle strength and function those taking megestrol acetate (MA) had worse outcomes than those taking placebo. The findings come from a study looking at progressive resistance muscle strength training (PRMST) and MA in elderly people with an acute functional decline after an illness--to see if these promoted speedier/better recovery. This was a small study involving 29 people who were followed for 12 weeks; they were randomized independently to 800mg MA daily or placebo and PRMST or some sort of low-resistance muscle exercise regimen. Most of the outcomes were non-clinical (standardized muscle strength/performance characteristics, etc.). The findings were:
a) Patients performing PRMST improved substantially more than the patients doing the other exercises. (Details on what PRMST entails are in the article).
b) Patients receiving MA all around did worse: it attenuated or nullified improvements from PRMST, muscle strength went down or didn't improve, and aggregate physical functioning scores worsened in patients receiving MA. Weight-wise, the findings were consistent with what is known about MA: weight went up a little--all fat--& muscle mass didn't change at all.
Despite the small numbers, most of the damning findings for MA achieved statistical significance (highlighting just how profoundly poorer the MA subjects did). That said, it's tough to get super-excited about such a small study, unless you're a MA skeptic looking for another reason not to use this drug (ahem). It should also be noted that this is a substantially different look at MA than how it's been evaluated in advanced cancer patients, for which there is indeed evidence it increases appetite and leads to a small amount of weight (fat, not muscle) gain--and equivocal evidence it improves quality of life (a few patients, certainly, seem to love it). This study, however, raises the spectre that MA may actually be doing harm in frail, elderly patients.
Confirmatory evidence that poor motor function is associated with worse prognosis in the elderly. I'm not going to comment on this much but it might be of interest to those of you who track these things.
And a footnote to Christian's recent post on Art Buchwald's death: a nice, pro-hospice article from the NY Times by Jane Brody (who frequently writes about end of life issues, usually pretty reasonably). Thanks to Tom Quinn for alerting me to this.
Thursday, January 25, 2007 by Drew Rosielle MD ·
Wednesday, January 24, 2007
JAMA has another Perspectives on Care at the Close of Life piece about fatigue in the dying. It's a nice review; comprehensive, accurate, based in a nice case, etc. I sort of had this weird feeling while reading it though like I was missing something, or that its structure was disjointed--something was wrong. That's when I realized the article kept on veering its discussion from fatigue to depression to pain to weight loss back to fatigue, etc. I then realized that the article, itself, embodied the slug-like epistemological goo surrounding fatigue in the dying/the advanced cancer patient. Is it a discreet disease (or syndrome) with risk factors, treatments, etc.? Or is it just a symptom of other diseases/syndromes (cancer, depression, COPD, etc.) whose treatment is the same as the underlying condition's? Or is it an inevitable, normal part of the human condition, as one's body begins the cascade of dysfunctions which will lead to death--a normal, expected part of dying? The article sort of acknowledges this, but then just jumps around from one version of fatigue to another without warning and it makes for some off-kilter reading.
There is a very welcome section at the end about 'managing expectations' about fatigue which has this quote from the doctor interviewed in the piece:
"I have a number of patients who suffer from fatigue who I think mostly just want...someone to listen to them tell them their story."
This is absolutely the most important sentence in this article. Insofar as our treatments for this thing called fatigue generally suck, and insofar as it is often a inexorable part of the transformation of a patient's life from healthy to sick to dying to dead (and is therefore unfixable), fatigue is frequently not something to be diagnosed and fixed. Instead it is an aspect of suffering, a stigmata of that transformation, and our (clinicians') role is to...well...everyone has their own words they like to use here and I always struggle with the right ones...bear witness to it, offer a presence, listen, and acknowlege the mystery and pain of dying.
There's also a coda for the recent Perspectives on palliative care for homeless patients. The patient is still alive, still homeless/transient, and still receiving palliative care.
And super-briefly--Archives of Internal Medicine has a prospective cohort study further validating the association with SSRI use and osteoporotic fractures in the elderly. Although the study wasn't really designed to look at this fully, the authors postulate that the mechanism of this is not necessarily increased falls (as with tricyclic antidepressants) but via bone density & health. The same issue has an article linking psychologic factors with cardiovascular disease: apparently " cynical distrust" will raise your levels of inflammatory markers. Does this mean all bloggers are destined to die young?
Wednesday, January 24, 2007 by Drew Rosielle MD ·
Tuesday, January 23, 2007
Some more quick stuff on Art Buchwald's death this week. The New York Times has a new video feature on its website called 'The Last Word.' Art Buchwald is apparently the first guest to be interviewed about their life and death before they died (obviously). For big fans of Art, view all 4 short videos (about 3 mins. each) . For those just interested in hospice and palliative care, view Video 1 and 4.
The best and most classic moment (which I will do no justice here by typing...you just gotta see it) is when Art says..."Hi. I'm Art Buchwald and I just died." I totally laughed out loud. I have watched it a couple of times because he is a pretty funny guy in person not just on paper. (about 30 seconds into video 1)
The second best moment is his newly coined phrase "A celebrity for death" in video 4.
It would be nice to see some of these things for all people not just celebrities. I know people typically make photo collage videos, but it is nice to have some insight into who the person is, if they have been able to face their own mortality.
Tuesday, January 23, 2007 by Christian Sinclair ·
Monday, January 22, 2007
Since the AAHPM's Annual Assembly is coming up, I would like to go through the schedule with you day-by-day and highlight which talks or presenters might be particularly good or interesting. I look forward to getting the brochure for the first time ans seeing all the different people speaking and what topics are 'hot' or 'not this year. This is not a ringing endorsement or a session to tell you which talks you should or should not go to. If I don't mention anything about a session, it is way more likely I do not have a strong enough opinion to waste your time reading a weak preview. If you have any comments on any of the presenters or talks please feel free to add.
Click here for the AAHPM Annual Assembly Brochure 2007 (pdf)
Register soon if you have not already!
Wed, Feb 14th - Preconference Workshops
Hospice Medical Director Course - Module A - Clinical Skills
I enjoyed the Module (B) I went to a few years ago, and thought it was really well put together. Since I did fellowhsip this session probably would not add too much for me, but is likely a great overview for those just starting in the field. I wonder what will happen to these sessions after fellowship becomes mandatory?
Career Development Bootcamp (Casarett and the Palliative Care Rock Stars)
I went to this session two years ago (or a previous incarnation of it). I found it quite helpful and met some good contacts during the session who were in similar boats to mine. i think the difficulty with sessions like this is that depending on your clinical location and organizations ability to respond some of the issues here may be beyond reach for some. I think the cast they have for this is outstanding as you can tell by my fawning over the crew they have selected for this session. It just reads like a list of the last journal of JPM.
Opioids in Pain Management (Mellar Davis and Susan LeGrand, among others)
Probably a good choice if the Module seems a bit too simple. Have not heard these two talk before but I know they know what they are talking about.
Billing for Hospice Services (Chamberlain)
Great choice if your clinical skills are honed but you just can't seem to keep your physician billing to the level that you might expect with a specialty practice that has no procedures. There are some pretty confusing things in understanding and optimizing billing so if you have not been to a billing talk before this is probably the Daddy of them all.
Home Visits (Woods, Farmer, others)
I don't know Woods, but I do know Chad Farmer as he was one of the original founders of the Fellow's email list that eventually became the Professionals in Training Special Interest Group. Never heard him talk, but he is a pretty good guy. And since this group is all from LifePath, I am sure they know how to make your home visit program more worthwhile.
Evidence-Based Formulation of Prognosis (Sinclair, Salacz, Affield)
(Shameless plug) I submitted this talk because prognostication is one of my favorite topics in palliative medicine. It combines the mystery of the unknown with science and exploration. Prognostication is always asked of us as professionals, but we frequently are working from gut rather than data. Since I was never taught how to prognosticate, and only been to a single hour lecture (by Christakis), I have really jumped into this subject whole-heartedly. We are planning a very interactive and informative 4 hours, so I would probably call this the pick of the day. :-)
Implementing a Nursing Home Palliative Care Program (Levy)
I don't know the speaker, and the topic probably deserves a 4 hour time slot. There are a lot of pearls to be gained from those that have managed to work well with the nursing home population. It looks like it goes beyond how to market to them (more pens!) and actually how to work together clinically which should be the goal.
Competency-Based Assessment for Fellowship Faculty (Billings/Block)
It is too bad I am talking during this time, because anytime you get a chance to see Billings and Block present you should try and make it if the topic interests you at all. I was honored to be a part of their Harvard PCEP program (you should do it too!) and get to know both of them. I learned how to teach others from them. They are great teachers. This should be a good session but may end up being a small group workshop based on the small audience it is geared towards which works in its favor.
No comments on the HPNA sessions because I am not familiar with any of the speakers. I have heard good things about the BOATING one-act play about goals of care which is in the afternoon session. And APN billing is probably a big issue for those of us working with APN's. I work with a very good APN at KC Hospice and given all the confusing state regulations for this new discipline, anything to help work through the red tape is welcome.
Again, leave your comments especially if you want to advocate for your talk!
Monday, January 22, 2007 by Christian Sinclair ·
Friday, January 19, 2007
The most recent Annals of Internal Medicine has a review article and metaanalysis about chronic opioid therapy for chronic back pain. This is a very interesting article which is being widely reported as refuting the idea that opioids are effective for chronic back pain, and that they cause a lot of addiction. Here's what they actually found...
a) Surprise surprise the quality of the studies overall was poor, and there was sufficient heterogeneity in them that limited metaanalysis (although they applied it to some things).
b) All the head to head studies of opioids vs. placebo showed they were more efficacious (albeit modestly so); all the studies comparing opioids to active non-opioid meds found opioids equal or better than nonopioid agents. Nevertheless when they re-tooled this data in the metaanalysis they found no benefit to opioids. I'll be frank I'm not sure how all of this works from a statistical standpoint. I'm used to seeing metaanalyses doing one of two things: looking at a many studies with differing conclusions, compiling all the data, and coming out with (presumably) a more definitive conclusion (more definitive because the amount of data/number of patients looked at/etc. is higher); or looking at a bunch of smallish studies which all suggest a finding but lack power to show it, compiling those data, and answering the question of whether or not that finding was accurate now that there are adequate data. In this study, however, particularly for the studies involving placebos, all the studies individually found the same thing (opioids modestly effective), but when they pooled that data they concluded that well, all those studies were wrong. I'm not sure how this works from a statistical standpoint--I'm not particularly doubting it more than expressing curiosity as to how it can happen and would love a pallimed.org reader to comment about it and enlighten us all.
c) Anyway, at best, opioids are modestly effective for chronic back pain, but the studies aren't that great--that's consistent with the prevailing dogma. In my own experience I have had a few patients for whom opioids have been wonderfully helpful, a few for whom they've been modestly helpful, and a few for whom the side effects etc. just weren't worth it...in sum: modestly effective.
d) Now for the 'addiction' stuff. Reported in the abstract, and widely in the press, is that they found the prevalence of lifetime substance abuse to range from 36-56% in these patients, and that current substance abuse "as high as 43%" of these patients. The context that's missing in these figures is the prevalence of substance abuse in non-opioid users with chronic back pain. Only a couple of their reviewed studies actually looked at this as far as I could tell. One found that lifetime prevalence was 54% in opioid users vs 52% in non-opioid users and that current substance abuse was 23% for both groups. Ooops. The other one found that lifetime prevalence of substance abuse was slightly higher (46%) in non-opioid users than opioid users (43%) . Double-oops. As far as I could tell the other studies didn't do any comparisons with non-opioid users (to be fair there was a single study which showed a much higher rate of 'aberrant' medication behavior in opioid users vs. non). Oh yeah, they also point out that only two of the studies actually used validated substance abuse tools to identify which subjects truly had a history of substance abuse.
So the real conclusion, I guess, is that current and lifetime prevalence of substance abuse disorders is relatively common in chronic back pain patients...probably.
Now, onto how these findings are predictably being misrepresented in news coverage of the article.
This is from a relatively respectable source, Reuters (via Medscape):
"Findings from a systematic review of published research suggest that opioids often provide no advantage over non-opioids for relieving chronic back pain, but carry a high risk of addiction."
It's that last bit about the 'high risk of addiction' which is particularly wrong.
This is one of the authors quoted in a press-release:
"Our findings suggest that clinicians should consider other treatments with similar benefits but fewer long-term adverse effects."
What I'm not sure about is what are these safe and efficacious treatments? Insofar as opioids (in the studies they looked at for this review at least) were as good as or better than non-opioids (metaanalysis aside), and long-term NSAID or COX-2-inhibitor therapy probably isn't very safe either particular for the elderly (they actually only looked at one study comparing an opioids with an NSAID and the opioid did better), one is left wondering what it is you're supposed to do? Where are these effective therapies?
No one therapy is clearly superior for chronic back pain, and patients frequently will need to combine a variety of types of drug and non-drug treatments to get decent relief. Opioids are one of these therapies--they have side effects, complications, and risks to be sure--but to suggest that these findings indicate we are making a bunch of addicts out of chronic back pain patients does no one a service.
And adieu to Art Buchwald. Thanks Christian for posting that, I didn't know. I can only hope that I'll be writing columns sticking it to the President from my hospice room.
Friday, January 19, 2007 by Drew Rosielle MD ·
Art Buchwald the famous Washington columnist died yesterday. Drew had posted about him here (1st post, 2nd post), and the Hospice Guy has a post about Mr. Buchwald's death and the book review about Buchwald's book that he had just posted without the knowledge that Art died. I have not read the book yet, and did not know it was even out.
The Washington Post has a very nice editorial as well you might expect.
by Christian Sinclair ·
Wednesday, January 17, 2007
Coming up in late May 2007 is the 4th Annual Advanced Learning in Palliative Medicine conference (brochure here) in balmy Halifax Nova Scotia. It's sponsored by the Canadian Society of Palliative Care Physicians and promises to be a worthwhile event. Full-disclosure: I am going to be speaking at it, at the inhumane hour of 0815 I'll add--a time of day my brain is fit only to direct coffee to my mouth--about blogging and learning how to sip from the fire-hydrant flow of medical information we are constantly under in a (hopefully) clinically meaningful way.
Journal of Clinical Oncology has just published an entire issue on cancer & money/economics. Needless to say, I didn't read the entire thing, but did read the article by Daniel Sulmasy on rationing cancer care and the value of human life. Sulmasy actually makes an appeal to common sense in this, in an argument that is too subtle to summarize here**. Instead I'll note that the article is a contrarian's dream & he uses the discussion to gleefully rip into a lot of modern medicine and policy, including cost-effectiveness analysis, QALY, etc., as well as this:
One used to hear it said often that a particular study result was "statistically significant but clinically unimportant." Such a common sense judgment is rarely heard today. Researchers, their funders, advocacy groups, universities, and for-profit producers of devices and drugs all have a huge stake in touting the success of their research. These (usually unarticulated) self-interested motives blend almost imperceptibly into expressed beliefs in the incremental nature of medical progress and into population-based arguments that small differences (if the condition is sufficiently common) lead to large net gains in public health. Thus nearly every statistically significant improvement, no matter how small, has come to be hailed as a breakthrough. Cardiologists, for instance, regularly laud the results of studies that demonstrate 1% absolute differences in outcome, despite enormous costs, as "breakthroughs."
**The sum of his argument is:
"A common sense approach to resource allocation would argue that when extremely expensive treatments are developed that are statistically superior to their alternatives, but the advantages are clinically unimportant when relating the data to the patient, these treatments can be withheld at the bedside."
He follows this with "one should not underestimate the effort that will be involved to restore a universally shared appreciation for common sense among patients and practitioners." I'll append a (!) to that last statement.
www.pallimed.org is here! (the prior post was me panicking today when for 8 hours the entire thing was FUBAR'd).
The good news: it's exactly the same as pallimed.blogspot.com!
The bad news: it's exactly the same as pallimed.blogspot.com !
More good news: all of your old links, including links to http://pallimed.blogspot.com (and individual posts at pallimed.blogspot) should still work and will be re-routed to www.pallimed.org.
More good news: we are hoping to improve the look and functionality of Pallimed in the near future, but don't hold me to that.
A little bit of bad news: do not to to http://pallimed.org it doesn't work. You need that www in there (this will hopefully be fixed at some point in the future).
Viva Pallimed & let your friends know!
Pallimed has always been a labor of love, and will continue to be so for as long as we do this. However, we have decided to go 'legit' and pay for our own domain name etc. Because of this, and our aspirations for expansion, I placed a 'donation' button on the sidebar. I want to be on the up and up about this, and to note that it goes without saying that no one in this universe is making any money from blogging about palliative care [do I hear a (!!!)], and that any donations will go towards:
-maintaining pallimed.org (domain name registry, hosting, etc.)
-expanding and improving the blog's layout and functionality
-future projects which may or may not include: Pallimed CME, reader giveaways (of educational material, subscriptions to medical journals, etc.), scholarships, etc. etc. (feel free to suggest projects).
Wednesday, January 17, 2007 by Drew Rosielle MD ·
Monday, January 15, 2007
1) I stumbled across a Louisiana news clipping which referenced a report published from Lancaster University (UK) and the International Observatory on End of Life Care. I have not heard of this group before, but I know that many of our readers are interested in international efforts in palliative care. The particular report stated that:
33 percent have yet to take the first steps to build service capacity. In countries where hospice-palliative care services exist, provision is mostly localized, with only 15 percent of countries having achieved a measure of integration with mainstream healthcare providers.
I know some of my peers at San Diego Hospice have done quite a bit in pushing this field forward globally. They have some great stories about helping doctors in foreign hospitals administer their first dose of morphine to a patient and having the staff, patients or doctors declare a miracle that the patients pain was relieved. I am not doing justice to their story, but if you get a chance to hear anyone speak on International Palliative Care efforts, you really do become humbled at what we do have here in the United States despite our occasional grumbling that 'the rest of medicine doesn't understand palliative care yet.'
In addition to focusing on international efforts, the group of 18 staff and 8 students also are focusing on studying the History of Hospice. Overall a great website resource for international hospicee studies. They have a good selection of free journal articles they have published as well. I have added the web site into the right hand column of helpful sites for our readers.
2) Ira Byock, one of our palliative care celebrities (which I describe as likely keynote speakers who have probably published a book) had a feature article in the Boston Globe. The part I was especially intrigued about was the following:
Byock's most ambitious project is just beginning, though. In October, he announced plans to make end-of-life care a central issue when presidential candidates canvass the Granite State this year. The initiative will begin with community forums and later involve policy papers, as well as questionnaires for candidates.Not many palliative care articles in papers talk about politics and I think this is a great opportunity that plays well to Dr. Byock's respect from his peers at Dartmouth and his status in the field. I will be excited to hear any results he gets from this initiative. Interestingly the article was written by Stephen Kiernan who is also the author of Last Rights: Rescuing the End of Life From the Medical System (Drew blogged about him here.)
3) Also a quick note about a press release from November about the Canadian Hospice and Palliative Care Organization changing a draft statement about euthanasia and physician-assisted suicide (both illegal in the US (except PAS in Oregon) and Canada). Apparently the language changed from opposing Euthanasia/PAS to neutrality and non-abandonment of patients. Read more about the contentious issue on a pro-life site here. No time to go into analyzing this issue at this hour. But FYI.
PS I have gone through our last 50 posts and added labels. More to come when I am procrastinating. I also labeled all posts either 'rosielle' or 'sinclair' so if you like the way either one of us writes you can select our best of's or at least see how much Drew outshines/outblogs me 4:1.
Monday, January 15, 2007 by Christian Sinclair ·
Saturday, January 13, 2007
January's Journal of the National Cancer Institute has an article (and associated editorial) which tries to answer "How Much Does Cancer Suck?" in the most literal of ways. It looks at the (dollar) cost to patients--in time-spent receiving care for their cancers--across several phases of cancer treatment including the of-dubious-significance-from-a-research-standpoint last year of life. Nevertheless it's an attempt to measure, albeit in a clumsy way, the toll of cancer & its treatment on patients. The study looks at claims data (from U.S. based cancer databases) for various medical events (doc visits, chemotherapy treatments, hospitalizations, blood draws, etc. etc.**), estimates patient time-spent on these, then attaches a dollar amount to that time. Needless to say there's a lot of 'estimation' going on, and their results must be interpreted as the grossest of ballpark figures, so to speak. **Curiously, the researches excluded hospice care.
You can read the abstract for dollar estimates. Time-estimates were the most interesting to me. During their last year of life, patients with many cancers spent over a month in the hospital (ovary, lung, gastric) and ~500 hours or more getting medical care in some way (lung, ovary, renal, gastric). This last figure is a low-estimate as they "discounted" time spent in the hospital for methodologic reasons (long story). It of course doesn't include time at home recovering from treatments (or not) feeling sick/debilitated/angry/alone, time spent arguing with insurance companies about how much Zofran they can get, and the all the other ways cancer & its treatments alter a patient's life. And then, of course, there's the cost/time-spent by 'informal' caregivers.
Research like this is frequently used to argue that this is time/money ill-spent. "Look at how much we spend/waste on people in the last year of life!" etc. That's a debate I've weighed in on before in the blog (can't find the posts--we're approaching 300 of them!) and not one I feel like opining on on this Saturday morning, other than to say that this sort of research gives us a sense of the tremendous human burden (time, money) of cancer and its treatment, but that doesn't necessarily mean it's ill-spent. Sick people are sick; sick people die; sick people need medical care; dying people need lots of care; that care is costly (time, money, for caregivers, etc.): caring for people in their last year of life should be costly. The question is how to get those people the right sort of care. How to measure that is tougher than adding up dollars, and there are people smarter than me trying to do it, and for that I am grateful.
Saturday, January 13, 2007 by Drew Rosielle MD ·
Tuesday, January 9, 2007
Most of the December 27th issue of JAMA was notable:
On the prognosis front--there's an article looking at trends in stroke mortality. Rates of stroke are decreasing, as is 30-day mortality in men (14%). 30-day mortality in women has remained stable for decades at ~20%.
There's a coda for the recent Perspectives on Care at the Close of Life on frail, elderly adults.
There's also Perspectives piece about end of life care for homeless patients. This, for me, is the most best of the (overall excellent) Perspectives on care at the close of life series--probably because it's an area I know little about, and the case/story presented in the piece is extremely compelling. It involves an older, homeless, heroin-using man with renal cell cancer. He was told when first diagnosed (and when he possibly had curable cancer) that he couldn't get his nephrectomy unless he quit abusing drugs(!). So after his renal cell spreads everywhere and there's nothing to do about it he is cared for by a palliative care team in San Francisco. He continues to use heroin both 'recreationally' (acknowledging there is nothing recreational or fun about heroin addiction) and for analgesia early on while under the care of the pc service. Then, as he gets sicker, and constantly seeking out heroin becomes more difficult, he quits and is maintained--apparently without incident--on prescription, oral opioids. All the legal, social, and financial issues are discussed at length. It made me hope they dedicate an entire piece in the Perspectives series on caring for people actively abusing substances at the end of life.
And finally, there's a series of letters about the recent Clinicians' Corner discussion of patient refusal of care (which involved a debilitated elderly woman in an objectively unsafe home environment who refused to be discharged anywhere other than home). (I was sure I blogged this but I can't find it anywhere which means I in fact didn't blog it. This is unfortunate given that last week I tried blogging an article only to realize half-way through I had already blogged it. I'll publicly state it now: I don't want a feeding tube.) It's a thoughtful, provocative article about patients refusing (what we believe is) clearly beneficial care.
Tuesday, January 9, 2007 by Drew Rosielle MD ·
Monday, January 8, 2007
As I just finished posting that last post, I saw a commercial for Boston Legal basically trying the NOLA Dr. Pou case for us on TV before we even get it in real court. Man those TV writers are fast! (Too bad I could not find a video clip of the ad. That would have been two videos posted to Pallimed!)
Here is the summary from the ABC website (put on your announcer voice):
Denny Crane and Alan Shore, joined by ambitious new attorney Vanessa Walker (Nia Long), head to New Orleans to defend a doctor accused of euthanizing patients during Hurricane Katrina. Meanwhile Claire Simms' new secretary, theTV straight from the mouth of Pallimed. Even with all the cross-dressing stuff...Drew?
cross-dressing Clarence, wants to file a lawsuit when he's kicked out of an
all-women's gym, and Denise Bauer weighs the pros and cons of dating Jeffrey
Monday, January 8, 2007 by Christian Sinclair ·
Dateline: New Orleans, LA
Old Pallimed Post #1 Post #2 post #3
The Times-Picayune reports that Dr. Anna Pou, and nurses Cheri Landry and Lori Budo have still not been formally charged with a crime. The story revolves around Hurricane Katrina and the actions at Memorial Hospital in NOLA. The three (sometimes referred to as the Memorial Three) were arrested by the Attorney General because of suspicion of committing euthanasia on 4 patients under their care during the few days after Katrina. CNN was denied access to some of the court documents in another event. Not much is actually happening in this case, and some are trying to get the case to move along so the nurses and doctors can have their day in court to clear their name or be prosecuted. But some newspaper editorials in NOLA have insinuated the AG is dragging his feet. Nothing much new since mid December.
Dateline: Chincoteague, VA
Old Pallimed Post
Abraham Cherrix is back in the news, and sadly his health and family are not doing as well as they had expected. He was given court approval to seek alternative treatments, including the Hoxsey method in Tijuana, Mexico. He is followed by a Mississippi physician who is a specialist in alternative medicine (particularly immunotherapy although the ACS states this is now the 4th modality of cancer treatment so I am not sure how alternative this is...) and radiation medicine. He has swollen lymph nodes in his axilla and is likely going to receive more radiation. And also very sadly the parents have split, which news outlets attribute to the stress of Abraham's illness. This is a grim reality of how much illness, goals of care, hopes, fears, emotions, etc. can infect family dynamics. And then you throw on top of that the magnifying glass of the media and the courts. That is incredible pressure. There is also a bill being introduced called "Abraham's Law," which basically states a terminally ill mature child (under 18) can make a joint decision with the parents to pursue non-standard treatments and not be accused of medical neglect. Some are protesting saying that this will weaken child protection laws and clog the courts with cases trying to define 'terminally-ill' or 'life-threatening' (Ask any palliative medicine consult team if they have ever had a controversy with other medical staff/patients/family in defining someone as terminally ill..it is very common!)
One nice silver lining for a often-maligned discipline, social workers. The same social services that first reported the case for suspicion of neglect (a good thing to at least look into) were also the same social services that came to the mother's aid when she was separated and was having difficulty with her bills and emotional support. Social workers are really great people. They are not baby stealers. (A social worker once told me that and it has stuck with me.)
Dateline: Rome, Italy
Old Pallimed Post
Piergiorgio Welby died on December 20th after a doctor removed him from his ventilator. The The physician, Dr. Mario Riccio, had a long conversation with the patient, during which time he found him to be competent and able to make this decision. Dr. Riccio also rightly clarified:
"This must not be mistaken for euthanasia. It is a suspension of therapies;But despite his clarification, the Associated Press still managed to muddy the issue, by contrasting his statements with how long you could be prosecuted for assisted suicide and about how law makers felt about euthanasia. Again, three different issues with very important differences that are often confused for one another.
refusing treatment is a right. Quite frankly, in Italian hospitals
therapies are suspended all the time, and this does not lead to any intervention
from magistrates or to problems of conscience."
When the people took his coffin through the streets, apparently the Roman Catholic Church kept the doors closed denying him a religious ceremony, because he 'sought to end his own life.' there is some explanation of possible investigation and prosecution of the physician involved. Apparently most of the Italian public supported the patients right to withdraw his ventilator.
by Christian Sinclair ·
Sunday, January 7, 2007
Yikes, It has been a while since I have been really sick, but now with twins, a lot more bugs seem to find a way to me. I actually had to stay home from work Friday, and was sleeping 16-20 hours a day on Friday and Saturday with a bad adenovirus. Could not swallow without severe pain from my swollen tonsils; could not talk; chills, shakes, sweats, myalgias. It is curious how being sick reminds you just how miserable it is to be a 'patient.' You just feel so vulnerable. Honestly my Palliative Performance Score probably got down to a 30%. Not good if you look at it for prognosis. I think I am going to live with my PPS now being up to 80%. Anyway since I am feeling better, I figure the least amount of work I could do is put up a new post.
Well, I sure am glad I decided to read my copy of European Journal of Gastroenterology & Hepatology, because there was a pretty insightful article on using self-expandable plastic stents (SEPS) in esophageal cancers. I have not seen a lot of SEPS or SEMS (metal) in practice here in Kansas City or in North Carolina, and I am not sure if it is a population selection, geographic bias, or something else. But this article reminded me to suggest these as a possible option for patients with severe dysphagia or aphagia from esophageal cancer which usually presents as very aggressive and inoperable. The study enrolled 69 patients with advanced inoperable esophaeagl cancer, of which 66 received SEPS. The reasons they think SEPS may be advantageous over rigid plastic or metal stents that have been the standard is because SEPS (and SEMS) have more flexibility, less tumor ingrowth/overgrowth, less migration, and less need for pre-dilatation (or is it dilation?). This study was to show that SEPS can be done successfully for symptom reduction.
To be enrolled you had to have a dysphagia score of 3 (liquid only) or 4 (no PO intake). Interstingly the mean Karnofsky was 78.3 (range 50-100). Patients were followed to death and survival range was from 40-312 days (mean 129). For the procedure, all patients received pethidine. Don't know what pethidine is? Well it is the International Nonproprietary Name (INN) for a drug you recognize as meperidine. Still a favorite by anesthesiologists, OR's and procedure suites everywhere. At least in one time doses it chances to accumulate and cause seizures is much less.
All patients had improved swallowing after stent placement, but 40% had moderate to severe pain after stent placement that required mild-to moderate analgesia (not further clarified in the article) They do note they had lost 41 of 69 patients by week 26. This is a great demonstration of what we are learning about cachexia. It is not just about the calories you take in.
Sunday, January 7, 2007 by Christian Sinclair ·
Thursday, January 4, 2007
Pain recently published a tidy bit of research on opioid-receptor genetic polymorphisms and morphine for cancer pain. The study involved ~200 Norweigan cancer patients (most had advanced cancer) on morphine (chronically, but on stable doses) for their pain (mean dose 117mg/day; range 10-760mg/day). They ran genetic tests looking at polymorphisms of the mu opioid receptor OPRM1 and the catechol-O-methyl-transferase (COMT) gene (COMT is not an opioid receptor but is almost certainly involved in pain modulation), and analyzed to see if certain polymorphisms were associated with higher or lower morphine doses. They found that across this population certain COMT polymorphisms were associated with 60% higher morphine doses; certain OPRM1 were associated with nearly double the average morphine dose than other polymorphisms. In their multivariate analysis, the combination of two of the "low morphine dose" polymorphisms significantly predicted lower morphine dose.
It's important to note that mean pain scores were equal across the study & didn't vary based on which polymorphism you had.
A few things here... It's been long recognized that for reasons unclear some patients seem to require a lot more opioids than others to get adequate pain relief, and opioid receptor polymorphisms have been one of the top suspects as to why this happens. It's nice, however, to see supporting evidence for this in real-life cancer patients. There will be undoubtedly more research along this lines, and perhaps in the not too distant future we'll have some sort of DNA-array/chip diagnostic panel which will tell us something clinically helpful (take your pick: patient more/less likely to benefit from oxycodone vs. hydromorphone, patient likely to need higher doses of opioid so be prepared for a steeper dose escalation, etc. etc.). Who knows of course if this will actually pan out, as one assumes that there are many other factors affecting a patient's therapeutic opioid dose. Until then, though, research like this is useful for our less opioid -friendly or -knowledgable colleagues who ummm, struggle, with appropriate opioid dosing--to reassure them there are authentic physiologic reasons why some people need "high" opioid doses.
Thursday, January 4, 2007 by Drew Rosielle MD ·
Monday, January 1, 2007
Happy New Year!
Two from a recent Journal of the American Geriatrics Society:
First is a look at how surrogate decision-makers approach end of life decision making. This was a structured, qualitative study of 50 surrogate decision-makers for elderly veterans that came out of a larger advanced care planning study. Some interesting, although not surprising, findings:
A) As the table below shows, most people had discussions with their loved ones because they were in the study (or, to be fair, serious life events seemed to have triggered a lot of these conversations). Note, however, that physicians did just as good as (no worse than? just as bad as?) lawyers (!!) in triggering these conversations--six percent. This is shameful.
Table 2. Motivators of Advance Care Planning Discussions (N=50)
|Motivation for Discussion||n (%)*|
|Study participation||13 (26)|
|Loved one's condition serious/could worsen||11 (22)|
|Loved one's hospitalization||10 (20)|
|Illness or death of others||9 (18)|
|Age/stage of life||4 (8)|
|Discomfort not knowing patient preferences||3 (6)|
|Attorney raised the topic||3 (6)|
|Physician raised the topic||3 (6)|
|*Several surrogates identified more than one factor that had motivated discussions; thus the total percentage was >100.|
B) To put the above grumblings in perspective, however, this study furthered the idea that these 'advanced care planning' conversations with loved ones aren't necessarily a panacea. About 2/3 of surrogates said they actually did or would base their decisions on those conversations, and it appears those conversations (or written wishes) were general, and vague, and probably inadequate to offer much in the way of specific decision making guidance. E.g. the patient wouldn't want to be a 'vegetable' (if any of you know someone who would want to be a 'vegetable' please let me know). Instead, many of the surrogates said they did (or would) base their decisions on shared life-experience with the patient-- an "inner-sense" of what the patient would want--or, frankly, they would base their decisions on what they (the surrogate) thought was best for the patient ( i.e. substituted judgment be damned). I have to say that these latter practices seem to me to reflect what usually happens when surrogates make decisions. Except for patients who have strict pre-defined treatment limitation directives (DNR/DNI, no feeding tube, no dialysis, etc.) and the medical decision that needs to be made happens to involve those treatments, advanced directives (written or spoken) are necessarily too vague to actually guide the surrogate. Instead, then, the surrogate bases their decision on something more nebulous--a sense based on their relationship with the patient about what s/he would want. In addition, many advanced directives (I'm using the term loosely here meaning both written AD's and more informal conversations) are along the lines of "when it's my time to die I want to be made comfortable and not have things prolonged artifically." All very reasonable--again, show me someone who, when it's their time to die, wants to spend those precious moments in an ICU. The problem here is not that surrogates can't/won't honor those wishes, it's that physicians aren't there to tell them when it's time:
"[The patient] is dying, and based on what you have told me, I think she would want us to focus her care on comfort right now."
As well intentioned as the AD movement is, this, and not making elderly couples have more explicit conversations about under what exact circumstances they'd want X, Y, & Z medical treatments, seems to me to be where the real benefit to patients would be...
The authors also quoted a surprising statistic: ~75% of patients hospitalized with life-threatening illnesses have a proxy making their decisions (the reference for this appears to be a subanalysis of the SUPPORT trial which I guess means that 75% of ICU patients require surrogate decision-makers since SUPPORT only looked at ICU patients).
There is also a proposal for an international " minimum data set" to measure the quality of end-of-life care for older adults. This is an intriguing idea and one that could really add a lot to improving care of the dying--particularly in identifying what groups we (physicians, health care systems, insurers, policy makers, etc.) are missing when it comes to providing good end-of-life care.
And finally, there was a recent review in Annals of Oncology about predicting prognosis in advanced cancer. It focuses on the palliative prognostic score, palliative prognostic index, and other similar scales that have been developed. Nothing earth shattering here, but a helpful resource summarizing these scales for those of you who are interested.
Monday, January 1, 2007 by Drew Rosielle MD ·