Monday, June 30, 2008
JAMA has a really interesting article comparing heart failure patients' perceptions of their prognosis with their 'actual' prognosis. 'Actual' in quotes because they looked at their predicted survival with the Seattle Heart Failure Model and not the cohort's actual survival (although they tried to look at that as best they could.) The study involves ~120 patients (median age 61 years) from a single US cardiac center (Duke) with a broad range of heart failure severity (about half NYHA III-IV). They were asked in a couple different ways how long they thought they'd live; this was compared with predicted prognosis.
Median self-reported anticipated life-expectancy was 13 years, whereas the median predicted survival by the SHFM was 10 years, and 60% of patients thought they'd either be cured or have a normal life expectancy. Overestimation of prognosis was not associated with actual prognosis, nor with reporting that one's physician had discussed prognosis with them (which was ~2/5 of the cohort). In multivariate analysis younger age, lack of depression, and worse heart failure class were all associated with more extreme over-estimation of prognosis. (This, then, represents another study finding that depressed medically ill patients may have more accurate understanding of their illness than non-depressed patients.). The sickest, class IV, patients particularly overestimated their prognosis: as a group they gave a number similar to the overall cohort's 13 years (whereas their SHFM prognosis was ~4 years).
Looking only at those who actually died during the (median of -) 3 year follow-up from the study (about 1/3 of the patients): the authors don't give their actual self-reported prognoses, but just note their overestimation was of a similar proportion to the overall cohort's (i.e. by ~40%).
That patients with CHF overestimate their prognosis is not much of a surprise; that over half of them didn't appreciate that their disease is life-limiting is not surprising either, although more troubling (to be fair this study looked at everyone at this center, including those who might have transient/reversible cardiomyopathies, although this was likely a tiny percentage of the overall cohort). The number of patients with relatively short prognoses (~few years or less) is small in this study, which makes it tougher to know what this says about patients likely to be 'of interest' to palliative care clinicians, other than reinforcing our already-established impression of generalized prognostic ignorance. Most disturbing to me is the fact that even those patients who said their docs had talked time with them were as wrong as everyone else, making one wonder what their docs said vs. what these patients heard/chose to hear/chose to believe/etc. In my experience the biggest 'hurdle' is just helping patients appreciate that their class III-IV CHF is a life-limiting disease.
There's also an accompanying editorial, which asks the obvious question of Well, why do these patients need to know their prognosis?
However, a relevant question is "Why is it important for a given patient to be aware of precise quantitative prognostic information?" There are several treatment decisions for which this is important—if anticipated survival time in heart failure is short (<1> referral for heart transplantation or mechanical support needs to be considered. Similarly, referral for hospice or palliative care would be greatly facilitated by an accurate estimation of even shorter-term survival (approximately 6 months or less); conversely, if the expected survival time is at least 1 to 2 years, referral for implantation of a cardioverter-defibrillator would be appropriate. However, beyond these specific examples, no other therapeutic interventions for heart failure exist for which precise knowledge of the likelihood of survival matters in the decision-making process.I've been thinking of this too, and I don't have any great answers to this. Having a sense of one's prognosis certainly becomes more important the shorter one's likely time is, and one could argue (although I have no 'data' to back this up) that knowing that it's likely to be a few years or less (like the Class IV patients) rather than 13 could make a major difference in how one spends one's time and I think should be disclosed (to most patients). But for patients with longer prognoses, what exactly is the impetus, other than if the patient wants to know him or herself? I'm curious as to readers' thoughts about this....
(See also the comments on another recent post about prognostication in CHF if you're interested.)
Allen, L.A., Yager, J.E., Funk, M.J., Levy, W.C., Tulsky, J.A., Bowers, M.T., Dodson, G.C., O'Connor, C.M., Felker, G.M. (2008). Discordance Between Patient-Predicted and Model-Predicted Life Expectancy Among Ambulatory Patients With Heart Failure. JAMA: The Journal of the American Medical Association, 299(21), 2533-2542. DOI: 10.1001/jama.299.21.2533
Monday, June 30, 2008 by Drew Rosielle MD ·
Continuing our intermittent practice of reviewing of treatment guidelines/consensus statements for mentions of terminal care/palliative care, a multiple-organization consensus guideline about implantable cardiac devices has recently been published in Europace (free full-text here). There is a lengthy section on ethics of device deactivation, decision-making around that, etc. It is pretty straight-forward, and treats implanted devices as medical therapies like any other, and can thus be discontinued after careful consideration like other therapies (it avoids the whole these-things-are-implanted-therefore-become-part-of-you-and-thus-subject-to-unique-ethical-analysis debate).
In addition the panel argues that continuation of ICD therapy may be indicated even in patients with DNR orders under these conditions:
- The arrhythmias being treated reflect the primary cardiac condition and not an irreversible secondary medical illness;
- Prompt ICD therapy confers the likelihood of added survival with meaningful quality of life and without post-arrest disabilities (e.g., cognitive); and the patient concurs with this approach.
First if patients are dying of another condition (e.g. cancer) who also have a cardiac condition (recurrent V. fib) and who don't mind being shocked if their 'fib acts up' it may make sense to keep the ICD activated.
Second, there seems to be a distinction here between a patient having an arrest/arrhythmia which is ICD-shockable and them having a 'real' arrest (becoming pulseless, etc. - something someone would want to do CPR for). I.e. there's a difference in prognosis/likely outcome between the two scenarios: this makes sense on its face but I'm not 100% sure that that's accurate. In my experience the frequency of either of these two scenarios occurring is very small (e.g. the patient's prognosis is so short when the DNR order is being established that the likelihood of the patient benefiting from ICD therapy is negligible), but it's a big world out there and I'm sure there are cases in which this would make sense.
One thing they didn't mention, which I'm still looking for in a publication, is how to counsel families how to deactivate them in emergencies (cancer patient is rapidly dying at home; burden of transport to ED or clinic to deactivate ICD is great; family - with presumably treating physician support - wish to deactivate ICD in-situ). I get asked this from time to time, mumble something about a magnet, but never know how strong of one, etc.
(Incidentally, there was also this recent paper in Pacing and Clinical Electrophysiology, which is a survey of clinicians about practices regarding discontinuation of device-therapy - I have only read the abstract. These subjects reported that about half the time it's the manufacturer's rep who does the deactivation.)
by Drew Rosielle MD ·
JAMA recently had a commentary about introducing spirituality in medical care. The author's main point, besides calling for more research (!) is to propose a spiritual intervention - the creation of a 'healing space' - for patients and their families:
'By using a "healing space," a spiritual intervention can serve as an experiential basis to restore a sense of order and meaning for patients and their families, improving their ability to cope and to attain a sense of wholeness.'(Details of what this could look like are provided.) The interesting thing to me here was that the author doesn't quite specify what the physician's role in this could/should be, although looking at the description of the facilitated intervention creating this healing space - this is not anything that 99.9% of physicians would have the skills at doing without there being major boundary issues (the question of whether or not any physician would want to or be able to is another question entirely). Anyway - I'm curious if anyone knows of teams which deliberately do such interventions - lead by a chaplain etc.? The author is a neonatologist, and perhaps this would be easier to do in the relatively controlled environment of a NICU...?
by Drew Rosielle MD ·
Wednesday, June 25, 2008
By now the news about the 2008 Midwestern flood is no longer the lead story in the news cycle. The president has been to some of the affected areas, and the presidential candidates have stopped by as well. Disasters of this magnitude affect the health care in a community because your coronary plaque or impending stroke isn't going to wait for the flood water to recede. A good friend of mine David Wensel, DO is a hospice & palliative medicine physician for Hospice of North Iowa in Mason City, IA, and he was kind enough to answer some questions about how the floods affected hospice operations during a disaster.Pallimed: Please give us some background on Mason City and the Hospice of North Iowa.
Dr. Wensel: The Winnebago River cuts through the heart of Mason City and flood stage for it is above 15 feet because of the 15-foot levee built in 1961. The river crested at over 18 feet so the levee did not fail. The water went over it but it did flood many areas of Mason City and shut down the city water treatment plant. About 140 homes have been condemend in a city with a population of about 30,000. Hospice of North Iowa serves 16 counties and has an inpatient unit with 6 occupied beds at the time of the initial flooding.
Pallimed: What is the most significant way the floods impacted home hospice care in Mason City?
Dr. Wensel: Many of our team members were unable to get to patients' homes due to road closings. The greatest impact to our inpatient unit was the lack of water. There was no direct impact to the buildings or offices of Hospice of North Iowa, however many of the staff could not come into the office due to road closings.
Pallimed: Can you share how some of the emergency planning went into effect?
Dr. Wensel: Our emergency planning went into effect as soon as we knew the river was going over the levee and we would lose water (from the water treatment plant). Our plan was to ensure that the patents and families at our inpatient unit would have appropriate care and if needed to be transferred to a facility that could care for them. We were able to continue providing care for our patents and families without interruption.
Pallimed: How did hospice agencies deal with staff who needed to look after their own concerns as well as for the patients and families?
Dr. Wensel: Several of our staff members did get flooded and we provided them with the time and support they needed to first care for their families. Once that was done, we asked our staff who was available to contact by phone or in person all the patients that were enrolled in hospice to ensure they were provided the care they needed. The police and fire department were available to help evacuate anyone who needed it.
Pallimed: Were there offers of support from other hospices locally, regionally or nationally?
Dr. Wensel: We did get offers of support from several of the hospice agencies in Iowa but the greatest help came from our hospital and parent organization. Hospice of North Iowa is owned by Trinity Health, the 4th largest Catholic Healthcare network in the US. Within 24 hours we had large amounts of water and several large trucks that could produce potable water. The CEO from Trinity arrived with a large donation from all the other hospitals within our system to help all the employees affected by flooding. It was truly amazing to see all the support and kindness offered by total strangers.
Pallimed: How was the coordination with hospitals or nursing homes?
Dr. Wensel: Many of our hospice patients are living in nursing homes, so the hospital and our hospice offered support and water to the nursing homes during the entire time of the flooding. None of the local nursing homes were flooded but did need help with staffing and water. Our hospital, Mercy Medical Center-North Iowa had to postpone elective surgeries so that only the emergencies could be handled due to the lack of water.
I was called into the hospital to admit a patient who suffered an intracranial hemorrhage and was unable to drive there because the roads closed due to flooding. We had to work with the hospitalist service and the nurses, chaplains, and social workers already at the hospital to get the patient and family the support they needed.
Pallimed: What are the important lessons learned from the flooding to share with other hospice agencies as they look at their own disaster planning?
Dr. Wensel: The greatest lesson learned is to plan for the worse case scenario. As a hospice think about if you lost half your staff, some of your patients had to be evacuated, and you had no safe water. You can never plan for every possible problem that might come up, but it would be very helpful to talk through different disaster plans with your staff. You never realize how wonderful it is to wash your hands, brush your teeth or take a bath until you can't. I had never thought about all the things we do to care for patents that require water.
Pallimed: Any other stories you care to share about the flood?
Dr. Wensel: As always the greatest stories are those of our staff and their commitment to caring for patients and families. Many of the sacrifices will never be known or made public. I can only say I was amazed how we rose to the occasion and accomplished the seemingly impossible. I am so proud to be one of the medical directors for Hospice of North Iowa, and thankful that I get the chance to work with the people here everyday.
Wednesday, June 25, 2008 by Christian Sinclair ·
Being a palliative medicine blog, you might think we would post an obituary here every once in a while, but there would be too much to say about too many wonderful people that we may never get back to the regular programming. One notable exception is the recent death of George Carlin, the stand-up comic who died this week, most famous for his "Seven Words You Can't Say On TV." If you looked closely, one of his constant philosophical/comedic themes was the use of words and how we use 'soft language' to make us feel better about very tough situations.
Palliative Care professionals understand the power of words; they are our tools like a surgeon's scalpel. The words we use must be discussed, studied, understood, re-examined and respected. That is why seeming pet peeves such as 'opioid vs. narcotic' are really about demonstrating knowledge, revealing potential biases, and a reflection of what our culture admires and despises. And for that I am glad for George Carlin's profanity laced comedic examination of what words can do.
The following 7 minute clip has words some may find offensive, and it won't get you the promotion at work if you play it on '10' in your cubicle. Go to 6:00 for an examination of euphemisms for death.
by Christian Sinclair ·
Occasionally the Pallimed writers are let loose into the world to present at various conferences. We will post some of those national/international speaking engagements here, just in case you wanted to stop by to say hello. We like to have dialogue with Pallimed readers!
Drew will be presenting at The 17th International Congress on Palliative Care, in Montreal, Canada, twice! The first one is a paper from Drew and I about "Online Medical Resources" (go figure!). Drew gets to present right after Dr. Chochinov, who we have discussed often, especially in regards to his work on Dignity Therapy. The second presentation is a concurrent session on "Communicating Prognosis with Honesty and Hope." Early bird registration ends July 1. More information can be found in the program (pdf) or online.
I will be presenting at Current Concepts (AAHPM) in Chicago on "Prognosis" and "Care of the Imminently Dying Patient" in two separate sessions on Thursday August 28th. Prognosis will also be a focus at the NHPCO 9th annual Clinical Team Conference in Dallas, TX, and I will be presenting an introduction/overview on "Prognosis" with more focused sessions to follow from other speakers.
If you happen to be coming to these conferences, feel free to introduce yourself or comment below so you know what other Pallimed readers are coming. No Pallimed get togethers are being planed like at the AAHPM Annual Assembly...unless there is enough expressed interest then maybe we could set something up.
by Christian Sinclair ·
Sunday, June 22, 2008
First - a note on format.
As you may have noticed with Christian's last two posts, and mine today, we are changing the format a little. Instead of having ~3 long posts a week, each of which (usually) references many articles, we are going to be splitting up the content into separate posts but will still be updating the content approximately 3x a week. The same volume of content will still be there; just in multi-post form (usually a 'major'/long post and one or more 'minor'/shorter posts).
We're doing this to make the blog easier to navigate and search - a post's title will more closely reflect its content. In addition it will make it easier for readers to skip topics they're not interested in - you won't have to scan a long post to see what's in there anymore.
We are not going to increase the number of emails a week (this will still be, on average, 3 - the emails will be about the same length too - it'll be the same amount of content just divided up more rationally). All the posts will be clustered together so they'll go out in a single email. RSS readers will just notice several posts coming up at once and can pick and choose which to read. The major difference this will make will be for people who go to the blog directly (which is sooo 2005); if you do just be sure to scroll down to make sure you haven't missed any posts.
Give us feedback about how you like this, or not.
JAGS has a paper on predicting 6 month mortality / hospice eligibility in hospitalized patients with CHF. The data used comes from a prospective trial (done, unfortunately, in the mid 1990s) looking at a case management intervention in heart failure mortality. There were ~280 patients, all over 70 years old, and all were enrolled at the time of discharge from a hospitalization for CHF (mean NYHA heart failure class of 2.5, mean EF of ~40%). The researchers looked at characteristics of subjects at the time they were enrolled, compared differences between those that were dead at 6 months (n=43) and those that were living, and created a scoring system to predict 6 month mortality.
The four characteristics which independently predicted 6 month mortality were: BUN over 30mg/dL, systolic blood pressure less than 120 mmHg, presence of peripheral vascular disease, and serum Na less than 135 mEq/L. Patients who had 3 or 4 of these risk factors had a 66% 6 month mortality (41% for 2 risk factors, 16% for 1, 4% for none). Only 9 patients, however, had a 3-4 risk factors. The negative predictive value of a score of 3-4 was 86% (86% of patients who had scores less than 3 were in fact alive at 6 months).
Some comments.... The need for such an index/risk score is compelling, as there are no decent, objective (i.e. not clinician assessment) indices/ways of predicting 6 month mortality in patients with CHF, and a relatively simple scoring system like this could be useful for 1) establishing hospice eligibility, but more importantly 2) helping clinicians identify CHF patients who have 'acute' palliative care needs (need for discussions about prognosis, code status, advance care and terminal care planning, etc.). CHF is devilishly difficult to prognostic in, so any objective, data-backed guidance is welcome. On the other hand this index is not ready for clinical use. The data come from the mid-1990s and while CHF mortality hasn't improved dramatically (I think) in that time there have been more widespread identification and use of interventions which incrementally improve survival (ICDs, resynchronization therapy, spironolactone, etc.). And while an N of 43 (dead patients) is unfortunately not atypical for these sorts of studies, it's pretty low, and the N of 9 for patients who actually had 3-4 risk factors is low enough to immediately halt any clinical application of this (other than to reinforce the prognostic importance of PVD, hyponatremia, etc.). 'Further study is needed' (of course, but when can you not say that?).
The NHPCO guidelines for hospice eligibility for CHF patients are well-recognized for being largely...empiric (to be polite about it - although based on the best available data and wisdom at the time). Perhaps the NHPCO could fund a validation study using contemporary data from multiple institutions and many more patients? Unlike my ramblings in my prior post about cancer and prognosis, I perceive prognostic uncertainty to be a real issue in limiting the availability of hospice/palliative care in CHF.
Huynh, B.C., Rovner, A., Rich, M.W. (2008). Identification of Older Patients with Heart Failure Who May Be Candidates for Hospice Care: Development of a Simple Four-Item Risk Score. Journal of the American Geriatrics Society, 56(6), 1111-1115. DOI: 10.1111/j.1532-5415.2008.01756.x
Sunday, June 22, 2008 by Drew Rosielle MD ·
JAGS has a paper on polypharmacy/inappropriate medication use in patients with dementia receiving palliative care. More or less it's based on a consensus project involving geriatricians asking them what drugs are appropriate or not for patients with severe dementia receiving palliative care. That list was then applied to 30 some patients residing in long term care facilities and it was found that nearly a third of them were receiving at least one 'never use' drug. What is interesting to me is the actual list of drugs and what categories they were placed in via the consensus process.
First, statins and dementia meds (acetylcholinesterase inhibitors, etc.) were on the 'never use' list, along with chemotherapy. While I'm all for not using these agents in patients with severe dementia this very much implies an either/or model of palliative care being employed by these clinicians (as opposed to a concurrent care model; i.e. patients receiving palliative care means the patients are only receiving palliative care, so to speak).
Next, opioids ('narcotics') were on the 'always appropriate' list which is the first time I've seen such a listing for them on any sort of geriatric drug profile.
Last, and most interesting, were the drugs for which there was no consensus: the panel was too divided about their use. These included aspirin, muscle relaxants, 'sedatives and hypnotics,' and CNS stimulants. Clearly clinicians are divided over the use of these drug classes. Myself, looking over the list, found myself going "meh," or "no way" to a substantial number of the drug classifications (the above 4 for me would be rare, rare, sometimes, sometimes) . All of this I think bespeaks how idiosyncratic these decisions can be: the differences across clinicians as to what constitutes a worthless treatment, what is considered harmful or neutral (statin vs. aspirin - aspirin vs. clopidogrel [which was on the never use]), etc. Antiestrogens were on the never appropriate list (although they can have some analgesic/palliative benefit in breast cancer); they would have made my rarely appropriate list.
by Drew Rosielle MD ·
Continuing the implosion of antipsychotic use for 'behaviors' in patients with dementia, Archives of Internal Medicine published a retrospective cohort analysis about 30 day mortality or hospitalization in patients prescribed antipsychotics (they were higher). All patients were living in nursing homes or at home (none were hospitalized). This is not the greatest study on this topic: increased mortality has been demonstrated in randomized controlled trials of atypicals (i.e. we don't necessarily need retrospective cohort studies). What this one adds is that it looks at both typicals and atypicals and finds that adverse outcomes were higher for both (and a little higher for typicals than atypicals). That is - this supports the idea that this is a class effect of all antipsychotics and not just newer ones (in which the problem was first identified).
Cancer has a discussion addressing hope in the face of a terminal illness. Its focus is that period of time between a patient\family member hearing life-altering news (the cancer is incurable, there are no more treatments that will slow the cancer down, etc.) and them 'accommodating' (that's my language) that news. They describe this time as one in which hope undergoes a transformation (from hope to a cure, etc. to a painless death, or a few good months with the kids before things get bad again, or whatever it is) and which can take quite some time. None of this will likely be news to most readers of the blog, but this was one of the only articles I've read in a long time which focuses on and analyzes specifically that transition - what that transformation actually entails. A good one for the teaching file. I liked this quote about bedside manner:
Here, we focus on the cognitive aspects of hope management, but we also want to emphasize the profound importance of the behavioral and affective components - of the physician recognizing and responding to the patient's emotional condition. When the physician forms an empathic emotional connection with the patient, it conveys an unspoken but important message of caring; the physician's steady presence is an almost physical shelter in the emotional storm that often accompanies impending death.
British Journal of Anesthesia has a review of nerve blocks in advanced cancer patients. It's a casual review of the topic written from an anesthesiologist's perspective and is somewhat interesting for its discussion of the different approach taken in dying patients than, for 'non-dying' patients. Teaching file.
by Drew Rosielle MD ·
Friday, June 20, 2008
For Pallimed readers who have not ventured out to other blogs, there are some wonderful sites you may want to visit to broaden your knowledge of the palliative medicine field.
The Hospice Foundation of America sponsors the Hospice and Caregiving Blog, which is edited by Krista Renenger. The blog offers short posts highlighting hospice stories in the media, recent political issues relevant to hospice agencies, and caregiver stories. Some recent recommended posts include:
- The summary post of the Medicare Payment Advisory Commission (MedPAC) June 2008 Report to Congress on hospice growth.
- A post about state laws and implementing POLST (physician orders for life-sustaining treatment)
The other blog that we occasionally link to is the Hospice Blog written by Hospice Guy. He scaled back his posting frequency for a few months but I am glad he is back to writing a little more often. As an administrator for a hospice, his posts focus more on the practical issues of running a hospice agency and how that may impact patient care. His blog is most well known for the 'How to Choose a Hospice' series first started in 2005 and now being updated for 2008. If you type in 'choose hospice or 'pick hospice' his posts get pretty high in the search engine, so if you work for a hospice, you may want to see what he writes, since your potential future patients/families may be using his criteria. Here are the topics for the series 'How to Choose a Hospice':
- Why it matters
- Why ownership matters
- Why management matters
- Why location matters
- Why pharmacies matter
- Why size matters
- Why staffing matters (not updated yet)
- Why recomendations matter (not updated yet)
- Why some things don't matter (not updated yet)
Other posts from Hospice Guy that deserve some attention and maybe a little more commentary from our field are the posts on the Conditions of Participation for Medicare certified Hospice agencies that was just released in May 2008. If anyone has read through the 120+ page document and would like to guest post here (or even at Hospice Blog probably) it would be quite appreciated. Administrative issues are not a favorite topic to write about here at Pallimed. Let us practice medicine!
Dr. Sid Schwab highlights the positive aspects of empathy in preventing burn-out for a surgeon at Surgeonsblog.
Dr. Maurice Bernstein asks how do you want your doctor to be dressed. For palliative care doctors, I think the norm is no white coat, +/- a visible stethoscope. Of course this inevitably leads to the question, "When is the doctor going to be here? You don't look or act like a doctor."
A non-blog site highlighting death & dying as an integral part of life is the online magazine Obit. The site is professionally produced, and has interesting features like Died on the Same Day and Obit Revisited which looks at historical figures and the impact they had in life and death. Slightly morbid if viewed superficially, but with deeper reading the site is very life-affirming.
Friday, June 20, 2008 by Christian Sinclair ·
Just a few quick/fun things for your Friday:
1) Our new companion blogs
Thanks to all our visitors and subscribers to our new companion blogs.
Arts & Humanities has posted on palliative care films (almost 40 if you read the comments), art in a cemetery, a painting owned by Lenin, Hitler and Freud, and a song with instruments representing the last minutes of life in the ICU.
Case Conferences highlights some cases on several topics: intractable vomiting, denial of a cancer diagnosis, attendings with different prognosis. If you work with fellows, residents or medical students use these great cases from the University of Pittsburgh to prompt discussion on rounds or online.
2) Palliative Care Joke of the Week
(not likely to be recurring because of the lack of palliative care oriented jokes, unless you send them in)
As the recently deceased wait in line to get into Heaven, St. Peter sits at the Pearly Gates checking names of the lucky ones. All of a sudden there is a commotion at the back of the line and the noise moves up through the line. Eventually we see the cause of the restlessness of the line: a man with a white coat, stethoscope, and doctor's bag is hurrying past all of those queued up to enter Heaven.
"Hey, he's cutting in line!" one woman shouts. "That's not fair, just because he is a doctor, he thinks he is so important!" exclaims a frustrated man. St. Peter lets the man through the gates, and calmly reassures the crowd, "No, no that's not a doctor. That's God. Sometimes he like to play doctor."
(HT to Sid Schwab via Kevin, MD)
3) Doctor Constipator?
From the art-blog The Superest comes: Doctor Constipator to defeat the Beetleamster and his army of Dung Beetles. The premise of the site is that two artists compete back and forth to come up with superheroes/villains that sequentially defeat one another. Unfortunately Doctor Constipator was defeated by The Superstious Villagers: Every Mad Doctor's Nightmare. Even "The Superstious Villagers" is a better name then Relistor (methylnatrexone). Speaking of which...
4) New brand name for MNTX?
I took a suggestion (HT: JP) from a comment on the MNTX post for a new brand name for the opioid induced constipation medicine methylnaltrexone (MNTX) and made a draft logo for Wyeth to purchase from me so I can fund my palliative research institute. Incorporating the generic name and the function of the medication was a brilliant move by the commentator. And so, I unveil to you the new logo for the non-existent medication...MakiNTraXor.
5) Palliative Word Art
The web is wonderful for discovering cool artsy things, like this word generated art (via the TED website) called Wordle. You cut and paste words into a text box and it makes an abstract artistic representation of the words based on the frequency of use.
Here is an image of all the words on the main Pallimed page right now (not including this post and leaving out very common words like 'a', 'the', 'of', 'to', etc.).
Here is the result with Chochinov's article on Dignity Therapy from the journal of the American Cancer Society (free pdf):
Have a good weekend!
by Christian Sinclair ·
Tuesday, June 17, 2008
Several notable pieces from a recent JCO:
First is a study about predicting 2 month survival in hospitalized cancer patients. This was a French study from 2 hospitals (n=~170) which used prospectively gathered data (laboratory, performance status, and disease characteristics such as number of metastatic sites, etc.) to predict mortality in hospitalized advanced cancer patients who weren't 'actively dying.' All patients admitted to the hospital who met the criteria were enrolled in the study (if they agreed) - these were not patients identified by a palliative care referral or anything like that. Mean age was 62 years; the patients had a diverse mix of solid tumors (no hematologic); and median survival in the cohort was 58 days (i.e. despite not being actively dying these were very sick patients).
All the typical prognostic indicators were apparent in univariate analysis (Karnofsky performance score, dyspnea at rest, low albumin, high LDH, leukocytosis, number of metastatic sites, etc.), and 4 of these 'survived' multivariate analysis: KPS, albumin, LDH, and number of mets. These 4 were aggregated into a point-based predictive model which divided the cohort into good, medium, and poor prognostic groups (really poor, worse, & dismal) for 2 month survival. Each prognostic group was well-represented in the cohort, which is welcomed since in many of these models patients with the worst prognoses often have very small representation in the initial model development (e.g. an N of 12 - here it was 63). Patients in the dismal group had a 2 month survival of less than 10%. The prognostic scoring system is quite simple and could be done at the bedside (although it's too long to describe here).
Some thoughts about this: Clearly this needs to be validated in further trials, more patients, different institutions, etc. Beyond this, I have mixed reactions to seeing these indices, of which there are numerous (although this one has some advantages - simple data, and quite a powerfully strong prediction of 2 month mortality...assuming its validity is borne out with further investigation). What do these add to clinical care? Or to a clinician's prediction of survival (which was not tested in this study)? This index could, for instance, be used to identify patients acutely in need of palliative care. However what I'm getting at is how much more help/data do we need to predict which of our advanced cancer patients are going to do poorly? That the issue in patient care is not a lack of a solid scientific basis to prognosticate but a lack of will to actually formulate a prognosis and communicate it to a patient (see previous post). Most of us in medicine are positivists (in the scientific sense) whether we'd like it or not; I'm convinced positivism underlies the EBM movement, and underlies our assumption that more data/better indices/etc. improves patient care - cases like this I'm a little less convinced. I'd welcome any comments here....
Barbot, A., Mussault, P., Ingrand, P., Tourani, J. (2008). Assessing 2-Month Clinical Prognosis in Hospitalized Patients With Advanced Solid Tumors. Journal of Clinical Oncology, 26(15), 2538-2543. DOI: 10.1200/JCO.2007.14.9518
Next is one evaluating pain as a poor prognostic factor in prostate cancer. When I went through training I was taught that pain really wasn't a significant prognostic factor in cancer (although from time to time you see in crop up in univariate analyses in papers similar to #1 above). The current study in a post-hoc analysis of data prospectively gathered for a couple prostate cancer treatment trials in the 1990s (~600 men, all with castration refractory prostate cancer and who had ECOGs of 0-2). They used pain interference (from the Brief Pain Inventory) and patients with worse pain interference had a markedly worse survival (~10 months) than those with low pain scores (~17 months). My own, likely arbitrary and wrong, take on this is that it has something specifically to do with prostate cancer - more aggressive disease causing more bone pain, etc.
Finally, there's one looking at sleep disturbances in advanced cancer patients, in which a couple nights' worth of polysomnography was performed on over a hundred cancer patients. There was no control group. Nevertheless the sleep quantify and quality of the subjects was quite disturbed: less nocturnal sleep than normals, more periods of day-time sleep than normal, very low amounts of slow wave sleep (believed to be the essential, restorative element of sleep), etc. Per the authors this was the first large study using PSG on advanced cancer patients and may mark the next phase of cancer-sleep research.
JAMA recently had a 'clinicians' corner' piece about family requests for complementary medicine therapy after a declaration of brain death (based on a case in which just that event occurred). It's really a discussion about futility and a physician's role in providing (or not) 'futile' therapies. Given the patient in question was brain dead, and therefore legally not really a patient but a corpse (the fact that brain dead patients routinely aren't treated like corpses however highlights just how viscerally inadequate the concept of brain death is for many clinicians/families), makes the futility point in this case all the more compelling. On the other hand the traditional medicine that was to be given was in no way going to harm the patient (unless one rejects the concept of brain death), and the piece discusses in length just what physicians can and should do in such situations.
For me, the real question is not whether or not families should be allowed to administer 'futile' alternative or traditional treatments to brain dead patients (or dying ones), but in this case it's one of justice: should scarce and costly medical resources be used on dead people (to maintain brain dead people's cardiopulmonary function) at all (when there is no plan for organ donation)? A quote (I'll note however that the conclusion of the article isn't as strident as these stirring paragraphs):
Physicians generally should not agree to requests for clearly futile treatments, even when cost is not an issue, because doing so undermines medical professionalism and the supportable claims to expert authority of medical science. The physician is not an all-purpose technical extension of the patient's will and interests, but a professional committed to the good of health and the relief of suffering by the application of the medical sciences using sound clinical judgment. The terms of a physician's service are properly regulated by the ideals of medicine, reflectively endorsed and broadly conceived. Although the proper practice of medicine will be subject to lively and creative contestation along various frontiers, a physician with professional integrity is permitted, and sometimes required, to refuse to provide requested service that falls far short of medicine's regulative ideals as currently understood. Respect for the autonomy of the patient requires that a competent patient or her surrogate be allowed to refuse almost all treatments (with some exceptions for refusals that harm others), but such respect does not require the physician to administer all possible treatments. This distinction is underappreciated. ...[P]atients are not entitled to treatment that the treating physician judges to be bad medicine.
Tuesday, June 17, 2008 by Drew Rosielle MD ·
Thursday, June 12, 2008
JAMA continues the wonderful series "Perspectives of Care at the Close of Life" with an article from Dr. Harrington and Dr. Smith from VCU about the timing of chemotherapy in patients with advanced cancer who may be dying (sub req'd). This is particularly relevant because of the recent Dartmouth Atlas report on geographic variability in aggressiveness and costs in the last two years of life despite no large differences in outcomes.
A common opinion is that health care spending is higher then it should be in the last two years/year/6 months of life. Taking this position is clearly a sign of superior skills in prognostication or it demonstrates the ability to use a 'retrospectoscope.' Reading the case presented of a gentleman with metastatic non-small cell lung cancer as he progresses through three lines of chemotherapy will sound familiar to many palliativists. But it is not necessarily obvious when he become 'terminal.' Thus the dilemma of when to shift from curative to palliative care as a primary goal.
The two interviewed physicians in the case do well to show respect for the other, but you still get a sense of the tension that can exist between oncologists and palliative doctors. After being consulted the palliative care doctor called the oncologist and clarified the issues at hand, but they did not explicitly share prognosis as this quote from the palliative care doctor shows:
"They were shocked about the prognosis that I offered . . . of days to weeks. They were still expecting more chemotherapy. Here I was, walking into the room and basically saying, “Okay, folks, it’s time for hospice.”
Curiously as much as prognosis plays a role in these decisions it is somewhat glossed over in the article. This quote from the authors somewhat baffled me:
"When the prognosis is predictable, as with Mr L, why do most oncologists not directly address it?"The answer to the question is that the prognosis is not always so predictable. We need more prospective studies to demonstrate prognostic skill that so greatly influences decision making. The article quotes many studies showing use of new chemotherapy regimens within a few weeks of someone dying. What is not always clear is was it appropriate to be on the chemotherapy. It is easy to imagine the patient with an ECOG of 4 or PPS of 30 as one of those patients who died within a few weeks after the new chemotherapy started. But what if their ECOG was 2 and the PPS 60 or 70% and they still died. Would you consider that use of palliative chemotherapy appropriate?
These prospective studies of clinician and patient prognostication and the impact on clinical decision making is what medicine needs to better determine if we are making the 'right' decisions at the right time. Looking retrospectively only generally informs us of a existing challenge. It does not provide the answer.
The article is a good read with some great references and an excellent one for the teaching file for oncology and palliative medicine. The focus is not really on prognosis as I have made it here, and what it does cover the authors do an exemplary job. The tables are also particularly notable:
- What Patients Know About Their Advanced Cancer and Its Prognosis
- Palliative Chemotherapy for Metastatic Disease for 4 Common Solid Tumors
- Helpful Questions to Consider Asking About Palliative Chemotherapy
- Things to Do or Say (and Not to Do or Say) About Chemotherapy for Advanced Cancer
- Studies of Concurrent Palliative Care With Oncology Care
The article was highlighted in USA Today this week, and here are a few of the interesting comments from the website article:
Sorry for the long comment, but I have seen people refuse treatment and die because they were afraid of chemo or something as silly as losing their hair. Chemo is not that bad and has the possibility of extending a life significantly.
As a physician, we don't have crystal balls. To say, you have 5 weeks or 5 months is extremely difficult. We can say based on a certain type of cancer or terminal disease, MOST PEOPLE with this disease typically survive "X" amount of time....but to narrow it down to the individual patient is not feasible. There are many variables.
Palliative care is the wave of the future. These highly trained doctors and nurses do outstanding work with patients and the medical team assigned to those patients. Many times, my sister (the nurse practioner) has had to counsel doctors, interns and other nurses on how to talk to the patient and what to say. She herself has worked with scores of terminally ill patients and their families walking them through the journey, talking directly but gently, and helping them to see the full picture. Hopefully as this unique practice grows, most, if not all, hospitals will have palliative units to help everyone with these difficult issues.
Harrington, S.E., Smith, T.J. (2008). The Role of Chemotherapy at the End of Life: "When Is Enough, Enough?". JAMA: The Journal of the American Medical Association, 299(22), 2667-2678. DOI: 10.1001/jama.299.22.2667
Thursday, June 12, 2008 by Christian Sinclair ·
Sunday, June 8, 2008
Today is the 3rd anniversary of the Pallimed blog, and since Drew is on paternity leave I get to write the anniversary post again. (A Rosielle baby appeared around the first anniversary too! #2 by Drew here)
First, on behalf of Drew, Tom and myself, I would like to thank all of the readers without whom we would have probably lost interest in doing this a long time ago. When Drew started Pallimed (as a palliative medicine fellow) he only got one comment in the first two months, and that was from me before I joined up with Pallimed. The first year of posts we had 1 or 2 comments every 25 posts or so, whereas now each post is getting at least 2-3 comments. Drew, Tom and I read every comment and try to reply within 24-36 hours, so keep them coming.
Also our appreciation is deep for readers who share word-of mouth marketing which has helped Pallimed grow from 3 subscribers in March 2006 to almost 1000 subscribers (RSS and Email) today. In addition, I would like to thank all the readers who email us articles and interesting topics to cover. We try to give credit with a hat tip (HT) in the post if we use it. We can't use everything we get, but that does not mean it is not appreciated.
In addition, I would like to thank Drew and Tom for being great co-bloggers. We all do a lot of work behind the scenes to make the content shine and the blog work. They are great guys and hopefully you may meet them in person someday.
And finally a personal thanks to my wife, who understands when I say that I am 'just finishing up a post for Pallimed and I'm coming to bed soon.'
Some items to reflect on the growth of Pallimed since June 8, 2005:
- Tom and I came on board.
- Email and RSS subscription options added.
- Drew has posted over 323 times! (Still he bests me by 2:1!)
- Moved to www.pallimed.org
- Developed an official logo with a new layout and color scheme. (Image to the right: Pallimed circa Sep 2005)
- Branched out with blogs on Case Conferences and Arts & Humanities.
- Hosted Grand Rounds for Medical Blogs.
- Hosted two Pallimed get togethers at AAHPM/HPNA Annual Assembly.
June 8-14, 2008
This started with our first anniversary so since we are so close to 1000 subscribers (937 as of this post), let us see if we can get to 1000 by the end of June.
And besides what harm is there in yet another National Day/Week/Month celebrating/commemorating/memorializing something/someone/some event.
Sunday, June 8, 2008 by Christian Sinclair ·
Thursday, June 5, 2008
Several times in this blog we have discussed our preference for the term ‘opioid’ rather than ‘narcotic’ when referring to the substances (natural, synthetic, endogenous, exogenous) that occupy the mu receptor. See here and here for a couple of examples. Note the comments, as well. An interesting small, simple, and direct study from the Pittsburgh Veterans Administration Hospital has addressed the important issue of what patients understand when they hear the terms ‘opioid’ and ‘narcotic.’ One of our readers previously commented that using ‘narcotic’ makes sense since that’s the term patients (and other lay people) use and understand. On the basis of this study’s findings, she’s right. The researchers asked 4 (almost) identical questions of 100 people in a clinic waiting room. The “almost” part means that half the patients were asked about the term opioid and half about the term narcotic. The questions: “What is a narcotic/opioid?” “Give an example of a narcotic/opioid.” “Why does someone take a narcotic/opioid?” “What happens when someone takes a narcotic/opioid for a long time?”
The findings are both surprising and not. 83% of the patients in the opioid group did not know what it means; only 10% did not know what narcotic means. Actually both numbers sound high to me. Strikes me as nearly impossible to get well into the adult years without knowing what a narcotic is. I guess its more disappointing than surprising that so many patients don’t recognize the term opioid. Subjects in this study were recruited from outpatient primary care and surgical clinics. There was no breakdown of answers by clinic reported. Of the patients who recognized either term, only half in each group associated it with pain management in their definition and again when asked why someone would take an opioid/narcotic. Again, that is disappointing, but in my somewhat jaded view that may well be higher than the results you’d get polling reporters, DEA agents, politicians, politically-inclined prosecutors, and maybe some strata of the general population.
One of the major concerns expressed by those of us who worry about the negative legal and addiction associations of “narcotic” when applied to pain management was confirmed, but the numbers weren’t too bad, considering. 19 of 50 respondents associated abuse and illegal drugs with the term narcotic. The bad news is that 90% of the people who answered the question on what happens when someone takes an opioid/narcotic for a long time referenced addiction or an adverse outcome and the vast majority of those specified addiction.
The bottom line is that, if these results are generalizable, we have a lot of educating to do, at all levels and via all media.
This must be VA day at Pallimed. Paul Rousseau, a well-known palliative care doc at the Phoenix, AZ VA hospital wrote a short essay for The Left Atrium column in the Canadian Medical Association Journal called ABCs of Medicine. Seemed like the kind of piece you might write after a long day—or week—of tiredly swimming against the continually rising tide of depersonalization that “the System” has become. The trigger is an admission note that begins: “62-year-old male admitted for hospice placement with the diagnoses of HIV, DVT, PTSD, GERD, BPH and PUD.” Digging a bit, he is able to conclude that the patient is a “pleasant and alphabetized man who is dying, no longer smokes, and lives with his wife.” He muses on the various reasons for the “psychosocial silence in this chart.”
One more from the VA: this is a short review of opioid-induced hyperalgesia. It’s not very meaty and it is not a how-to article, but it succinctly lays out the prevailing theories/models of opioid-induced hyperalgesia and the three thus-far-identified interventions: opioid rotation (enough evidence to recommend it as a first line intervention); addition of an NMDA receptor antagonist such as ketamine or dextromethorphan (evidence not very strong and not recommended); addition of an ultra-low dose of an opioid antagonist (again, evidence noy very strong and not recommended). The authors point out that there is an investigational agent (Oxytrex) currently in clinical trials that combines oxycodone and naltrexone for pain management.
Check out this title: “A matter of definition—key elements identified in a discourse analysis of definitions of palliative care.” Sounds terribly dry, but it turns out to be surprisingly readable and so well put together that I will make it required reading of my students next semester. The article is fascinating from an historical, etymological, sociological, and cross-cultural perspective. The authors are all palliative medicine physicians (turns out there is no translation for palliative care other than ‘palliativmedezin’ in Germany) affiliated with German universities. They searched for definitions of ‘palliative care’ and ‘palliative medicine’ in Google and in textbooks, finding a total of 35 definitions in English and 26 in German. They then used discursive practice—“a process by which cultural meanings are produced and understood”—to analyze the definitions.
Key elements identified were target groups, structure, tasks, expertise, theoretical principles, and goals of palliative care.
Among the conclusions:
- The term palliative care is a pleonasm (a new word for me—means redundant) since both palliative and care are concerned with the issue of protection.
- Palliative care/medicine is unlike any other specialty since it doesn’t have a specific object of study nor define itself by the age of its patients
- In fact, it has a hard time defining its population of focus at all. Protection of the patient “means a comprehensive and at the same time diffuse orientation.”
- Only a very few definitions explicitly describe the philosophy of palliative care.
- Having the family and patient as both the unit of care and as members of the care team creates some inherent role difficulties
- There is no consensus on the meaning of the terms multidisciplinary and interdisciplinary
- There is an emphasis on symptom control, but Kearny is quoted as warning against becoming a ‘symptomatologist,’ as symptom management is only the beginning of palliative care therapy.
- In that context, the human being is the focus of care, the goals address suffering and quality of life, and emphasizing wholeness through a respect for autonomy and dignity is a defining value.
- Interestingly, the current American definitions are seen to de-emphasize death and dying as compared to historical and some European definitions.
There is much more and I can’t do it justice in this space. This is a great journal club article, and can be grist for both introductory discussion and reflection on practice and meaning for veterans and their teams.
Mangione MP, Crowley-Matoka M. Improving Pain Management Communication: How Patients Understand the Terms "Opioid" and "Narcotic." J Gen Intern Med. 2008 May 31. [Epub ahead of print]
Rousseau P. ABCs of medicine. CMAJ. 2008 Jun 3;178(12):1580-1581.
Leonard R, Kourlas H. Too much of a good thing? Treating the emerging syndrome of opioid-induced hyperalgesia. J. P-harm Pract 2008;21(2):165-168.
Pastrana T, Jünger S, Ostgathe C, Elsner F, Radbruch L. A matter of definition - key elements identified in a discourse analysis of definitions of palliative care. Palliat Med. 2008 Apr;22(3):222-32.
Thursday, June 5, 2008 by Thomas Quinn, APRN ·
Monday, June 2, 2008
Being familiar with other medical blogs is a great way to keep up on how other doctors and nurses approach care for the dying. In fact, many of the most popular posts always seem to involve frustrations of medical futility, or the emotional impact of caring for dying patients. The range in tone for these posts is quite wide, from derogatory and demeaning of patients and families to eloquent and demonstrative of the great compassion in medicine.
A recent post by the anonymous blogger, the Buckeye Surgeon, highlighted his surgeon's view of palliative care. I came across the post from Kevin MD, a popular medical blog aggregator. Here is how he highlighted the post:
Seeing a palliative care post got me pretty excited. As I read the post I was glad to see a surgeon espousing viewpoints on palliative care areas. The Buckeye Surgeon highlights how many elderly patients with very devastating injuries may be able to get to surgery but have many co-morbidities that prevent recovery. With much wisdom, it is pointed out that seeing the few who do really well should not blind one to the many who do not recover.
"Unrushed on his journey toward death"Well put. That should be the goal of palliative care.
In reading the post, it appears the surgeon may not have access to an involved palliative care team. I am very glad to see the mindfulness of palliative care, but there are some misconceptions to be addressed.
The post highlights that terminal extubation is something this surgeon actually forbids from happening in the orders:
-DNR-CC(DNR = Do Not Resuscitate CC = Comfort Care.)
-Do not extubate
-Morphine 4 mg IV q 15 minutes
-Propofol drip titrated to complete sedation/unconsciousness
-Turn down the sound on all monitors.
There are times when extubating a patient can cause more distress - an obstructed airway, a high risk for hemorrhagic bleed, inability to control tachypnea with medications, feel free to add others. But in my palliative care reading and experience, leaving a patient intubated is the exception, and not the rule. So I was very surprised to hear this approach of keeping patients intubated.
Have any Pallimed readers run into this with consulting physicians? My guess is probably not a lot, because these physicians may not consult palliative care as they would not want a palliative care team to extubate their patient.
Good point of using morphine every 15 minutes as that fits with the knowledge of the T-Max of the concentration after an IV dose, but it is not specified as a PRN, so is it scheduled? Many palliative care providers advocate for a combination of opioid drip and rescue bolus to anticipate dyspnea.
Instead of turning down the sound of the monitors, most have the ability to be turned off in the room and continue monitoring at the staff station. This also avoids the constant monitor watching in addition to having unnecessary alarms.
So why does the surgeon advocate leaving a patient extubated? Basically because it is more comfortable. It is explained in the post with the following passage:
...it isn't ethical to merely "turn everything off". They've decompensated beyond the stage of self-sustaining life. Unplugging everything and stopping all the drips is about as cruel a thing as I can imagine. I never terminally extubate a patient. There's nothing more gruesome than watching a patient suffocate after terminal extubation. A wise old nurse made me experience it when I was a resident. No reason to pull that tube out. The dead bowel or the fecal peritonitis is going to stop the heart soon enough. No reason to expedite the death with unnecessary agony.I agree with the blogger that it is unethical to be cruel, but I disagree that terminal extubation has to be gruesome, cruel, or cause suffocation or agony. There are reasons to pull that tube out. Not prolonging suffering is probably the most common reason given for extubation. Not continuing aggressive measures when you can no longer reach the goals set by the patient, family and medical staff is another reason.
Euphemisms and broad generalizations about withdrawal of life-support technologies are common with families, patients and medical staff, especially for the ability to make difficult situations more tolerable. 'Pull the plug', 'turn everything off', 'take him off the hook', 'stop treating her', 'withdraw care.' One role for a palliative care team is to highlight all the things that are being done for comfort, for emotional support to patient, family and staff, to prepare for death, to conduct religious and family traditions, to reminisce.
Many palliative care providers have worked in ICU's with dying patients and are therefore very familiar with the very involved process of terminal extubation of a ventilated patient. In palliative care, extubation is elevated to a procedure not just an order written for the respiratory therapist. Terminal extubation can be done well with a team approach, managing expectations, and aggressive symptom control for dyspnea and anxiety. Check out some of our 31+ posts on palliative care and the ICU to see some studies that talk about common ICU dilemmas.
Monday, June 2, 2008 by Christian Sinclair ·
As Drew mentioned he was taking some time off from Pallimed to become a father again. Pallimed is proud to announce the arrival of Max, the fourth Pallimed baby! (One and Two here, Three here) Drew reports Max, mom, and big brother Benjamin are doing great.
Congrats to the Rosielle's!
by Christian Sinclair ·