Thursday, November 30, 2006
The portrayal of hospice in the movies or mainstream entertainment has been relatively obscure. There are obviously many movies, TV shows, books, and songs that deal with death and dying. Hey death and dying makes for instant drama, just add water. But any mention of hospice is usually an aside, or indirectly related to the rest of the storyline.
Well now we have a movie called Two Weeks (web site - trailer - NY Times Review) opening this weekend that seems to focus a little more on the end of life and even involves hospice as part of the storyline. I am not sure why Pallimed did not get sent and advanced review (ahem!), but luckily Hospice Guy over at Hospice Blog did. He gives a very well written two part review. First from just a movie critic/general public point of view, and then from a hospice workers point of view. Even watching the trailer, you can get the general gist of the movie, and see some moments that are pretty commonly experienced by people in hospice and palliative medicine. (Such as the ever present - "Can we have medicines for the family too" wise crack.) You really should go read his review as he discusses many important points, without giving too much away of the plot.
The movie is quite an accomplishment to complete, and I appreciate what writer/director Steve Stockman has done, since I too would eventually like to write a screenplay and direct a movie (A boy can dream...). The movie web site has a blog with stories about how this movie came to be and the writer/director's own experiences with his dying mother. They also have a cross-over site with Yahoo! Health and there we have Dr. Ira Byock from Dartmouth blogging as well.
Now one thing I would like to point out in the trailer is that they focus in on a book that is entitled "How to Die." This book does not exist. The author printed on the cover is Mark Ragland (only Google reference is to a Art Director for the movie Ernest Goes to Jail, but he is also listed as the Locations Manager for the movie Two Weeks...Interesting!). A quick search of Amazon and Google do not bring up any books entitled "How to Die." But it does make for an interesting search. And here is what I turned up...
Learning How to Die - A book about Wilco frontman Jeff Tweedy and his clash with the record industry. Unknown why it refers to death and dying as that does not appear to be a central topic of the book.
How to Die in the Outdoors: 100 Interesting Ways - Not exactly a palliative medicine book by the sounds of the title, although I have had two patients request to be outdoors at the time of their death, I don't think this book would actually be helpful. Sounds more like a 'survival guide.'
Learn How to Die the Easy Way - This appears to be a art and photography book.
How to Die Without a Lawyer - A ebook designed to help you stay away from probate and lawyers gobbling up fees while settling your estate after you die.
To Die Well: A Holistic Approach for the Dying and Their Caregivers - Finally a book that most likely is probably what the movie was aiming for.
So the book "How to Die" does not exist, I guess it was probably more of a prop to move the plot along in the movie. It may have been a disguised reference to Final Exit the book that spawned much controversy in the early 90's about instructing people on how to end their lives. But since I have not seen the movie, I am not sure what role this fake book plays. I just thought it was interesting that they refer to a book that could be so controversial as too what lies inside, but in reality does not exist. After the movie comes out Pallimed may have to review it like the rest of the world.
(PS I just posted the most web links ever in a Pallimed post. Top that Drew!)
Thursday, November 30, 2006 by Christian Sinclair ·
Wednesday, November 29, 2006
Some light reading...
A few from this week's Science Times in the NY Times .
First is a discussion of advanced directives and how inadequate they so frequently are. Yet, it seems to perpetuate the myth that having a DNR order means "do not treat". See this: "The admitting physician reading your living will may interpret it as a "do not resuscitate," or D.N.R., statement, meaning you want no treatment for your life-threatening infection, in which case you would probably die. Yet a course of antibiotics and a week or so with assisted breathing could restore you to your previously active state." When this was written I thought to myself, "Oh this is a straw-man which the journalist is going to beat on," but no, she perpetuates this idea. Health care personnel interpreting a DNR order as meaning do-not-treat is the problem, and not the DNR order in and of itself. The article also describes some recent proposals for making advanced directives more effective. All of this is fine but, to me, the problems with advanced directives is not that people don't do them right, it's that there's no good way to do it, to predict what's going to happen, to spell out what you'd want in circumstances X, Y, or Z. Because, frankly, the only good way of knowing what you'd want in circumstance Y is to live it, and to sit down with your loved ones, physicians, and other care providers and talking over the best course of action. AD's have to be vague, and by design, don't work like people expect them to. Additionally there's a decent amount of evidence that, at least as far as AD's have been currently implemented, they haven't really improved medical care at the end of life and are frequently ignored. (I'm not trying to suggest at all that they have no value--they do--particularly in that they can give emotional "permission" to family members to limit certain types of medical care, as well as of course if people have absolute limits to what they'd accept, but they don't really 'direct' much care, such as it is.)
There is also a follow-up article with advice from Stephen P. Kiernan who wrote "Last Rights: Rescuing the End of Life From the Medical System" about advanced directives which is a little more reasonable.
The other is an article by a physician as to why doctors don't cry much in the hospital. I can't say it answered for me the question as to why doctors don't cry much in the hospital.
Thanks to my mother-in-law, Dr. Linda Thompson, for alerting me to these articles.
NYT articles are usually free online for a week.
Supportive Care in Cancer has a systematic review of treatment of depression in cancer patients. One could almost guess, verbatim, their summary statement in their conclusions...
The evidence for the effectiveness of treatment for MD and other depressive disorders in cancer patients is limited and of modest quality.
Pediatrics had a recent article reporting the results of a needs assessment on palliative care education for pediatric residents. To tie together two themes from earlier in today's blog post...
a) The summary results were dismal, and discouragingly predictable:
First, we found that pediatric residents report minimal training, experience, knowledge, competence, and comfort in virtually all areas of palliative care for children. The responses in no area achieved even a moderate level.
It goes on like this for a while. It reminded me of a phrase my palliative team uses sometimes when we encounter "the wide open gaping jaws of need" in our patients.
b) Thanks again to my mother-in-law for alerting me to this.
Wednesday, November 29, 2006 by Drew Rosielle MD ·
Monday, November 27, 2006
For those of you who celebrated it, I hope you had a fine Thanksgiving last week.
I'm trying to slowly dig through my backlog of un-blogged articles I had flagged and thought I'd mention an interesting article from the American Journal of Hospice & Palliative Medicine. It's a prospective study of morphine related side effects in (mostly advanced) cancer patients chronically on morphine, who were cared for by the Cleveland Clinic palliative medicine team (median age 64 years, half had ECOG's of 3 or 4 at the start of the study, median daily oral morphine dose was 144mg, most were also receiving non-morphine analgesics/adjuvants). The subjects answered a 32 item questionnaire about their symptoms once weekly for 4 weeks (42 patients answered at least one questionnaire; 30 answered all 4). The prevalence of symptoms at the time of the first interview had some surprises: 90% had dry mouth, 69% sedation, 64% myoclonus, 60% constipation, 48% flushing, 38% urinary hesitancy, 36% dysphoria, 26% nausea, 24% nausea, 21% nightmares. The symptoms that were present for an entire month in those who answered all 4 questionnaires were dry mouth (77%, although only 20% moderate to severe), 23% had constipation (3% mod-severe), 13% sedation (10% mod-severe), 43% myoclonus (0% mod-severe), 23% had urinary hesitancy (3% severe), 10% nausea (0% severe), 10% itching (0% severe).
A couple things about this. First, the authors noted this was the first prospective study of morphine related side effects in this patient population which was initially shocking to me, but on further reflection seemed congruent with the general poor state of symptom research in the cancer patient (outside of Epo/fatigue & 5HT3 inhibitors/chemo-nausea studies). The other point is that these are symptoms of advanced cancer patients who are chronically on morphine, not necessarily symptoms due to morphine (this was a straight-forward descriptive study without a control or comparison group, and clearly much of this symptom burden is from other drugs/processes). That aside, what surprised me (and the authors too) was that certain symtpoms such as dry mouth and myoclonus were pretty common (and 20% reported moderate to severe dry mouth for the entire month!), as were urinary retention symptoms--these were reported much more than I am noticing in my practice. On the other hand nausea was not very common and thankfully persistent moderate to severe nausea was absent from this group. This supports the idea that patients quickly become tolerant to morphine's nauseating effects. On the other hand sedation was quite common and 10% complained of persistent moderate to severe sedation for the entire month. Again, how much of this is due to morphine is unclear, but it is consistent with observations that a certain percentage of patients never get fully tolerant to the CNS toxicity associated with opioids. Personally, this study has raised for me the need to more aggressively look for these maybe-more-frequent-than-previously-suspected side effects such as myoclonus, xerostomia, and urinary hesitancy.
Monday, November 27, 2006 by Drew Rosielle MD ·
Friday, November 17, 2006
I am traveling for the next week and may not post again until after Thanksgiving. I know a couple of weeks ago I promised/threatened a Pallimed format update--that is still forthcoming but I'm not sure when it will be (it has to do with Blogspot/Blogger's software update which is being rolled out in bits & pieces). However, when it does happen, it looks like we will have tags and labels, making searching/sorting the blog much easier (we now have 255 posts). It will also make the comment spammers that much happier; up until now I have been able to manually remove most of their ads for "Vico-profen" & requests to "come visit [their] website--I think you'll like it!" Hopefully I'll be able to keep this up.
I'm going to try to unload a few from my large back-log before the holiday...
The Journal of Supportive Oncology has a case series on using endoscopic ultrasound to guide celiac plexus blocks. It's mostly just a general discussion of the technique & the actual case series is little more than a hand-waving 'this seemed to be helpful for most of our patients.' While I'm happy that this relatively new technique is out there, the best study ever of CPB was not a resounding endorsement of the practice. The same issue has an interesting review of hypovolemia in the cancer patient.
The IAHPC website has a brief summary of the new California controlled substances act which appears to be very reasonable and supportive of using controlled substances for analgesia. This summary is all I know about this.
A recent European Journal of Cancer Care has an article examining antibiotic use in dying cancer patients (free full-text here). It's a case series looking at antibiotic prescribing patterns in cancer patients admitted to a single hospital in South Korea for terminal care (mean duration of stay prior to death was 30 days). Not too much can be gleaned from the study other than antibiotic use was very common (84%--this number exceeded the percentage of patients for whom there was documented suspicion of infection). Similar to a previous study I blogged most patients didn't appear to have symptom relief (although, again, this wasn't a prospective study designed to look at symptom relief so who really knows). This area, along with the role of thromboembolism prophylaxis in similar patient populations (& I'm sure a few others), remains nearly a blank when it comes to quality research to guide us as to what, if anything, we should be doing on behalf of our patients. One can make arguments about what makes sense, of course, but what makes sense is often wrong when examined empirically.
The Journal of Pain recently had an article on the prevalance and characteristics of breakthrough pain in chronic non-cancer pain patients. This was a motley group of 228 patients with a wide variety of pain syndromes who were all on opioids with relatively stable pain control. 3/4 of them however had 'severe' episodes of breakthrough pain, a median of two of them a day, and which lasted on average ~60 minutes.
Friday, November 17, 2006 by Drew Rosielle MD ·
Wednesday, November 15, 2006
NEJM has an editorial about the Katrina physician/nurse homicide charges. It's written by a physician who worked in New Orleans during the disaster, and makes the very reasonable suggestion that decisions on how to care for moribund patients in similar disasters should be made prior to the disaster, not haphazardly during one.
Nathan Cherney has a review on terminal sedation in the current Nature Clinical Practice Oncology. I can't actually access the full text of the article but I appreciated his succinct summary of some people's ethical concerns with terminal sedation: Sedation is controversial in that it diminishes the capacity of the patient to interact, function, and, in some cases, live.
2 on radiation therapy from Supportive Care in Cancer. First is a review on attitudes towards palliative radiotherapy (to treat painful bone metastases) regarding the 8 Gy in a single dose vs. 20-30 Gy in multiple fractions controversy (multiple studies have shown that they are more or less equally effective, although duration of analgesia is clearly longer with with fractionated therapy). They found a wide variation of preferences among different constituencies (radiation oncologists vs patients) and locations. The study clearly supports the idea that use of single fraction therapy is not widespread, despite evidence for its use, and (surprising to me) some studies have shown that patients would prefer multiple fractions over a single dose. Perhaps it feels more like they're receiving 'real' treatment?
Along these same lines, the same issue has a prospective study looking at pain flares from palliative radiation therapy for painful bone mets. The data is from a randomized study comparing, guess what, 8 Gy single dose vs. 20 Gy fractionated therapy. Patients completed pain diaries during their treatment (this was a relatively small study of about 100 patients and only half of these agreed to do the pain diaries). Depending on how a 'pain flare' was defined it seemed to occur in 35-40% of patients overall (and a flare appeared to be more common in patients receiving single dose therapy). There was a trend toward prevention of a pain flair with concurrent dexamethasone use, although this was not statistically significant. They didn't actually talk about when the flares occurred, although presumably it was early on. This study brought to my attention the interesting research question of how does one define a 'pain flare.' They actually used a couple of definitions in this study, but basically it was at least a 2 point increase in pain score on a 0-5 Likert pain scale for at least 2 days in a row (in the absence of decreasing analgesic use) or a 50% increase in analgesic dose without an associated decrease in pain. The first criterion seems to be too conservative to me--assuming you can translate a 0-5 Likert scale to a 0-10 NRS (and yes, maybe I shouldn't be assuming this) their criterion would be at least a 4/10 increase on the NRS which seems like a lot, and one wonders if 'milder' pain flares are much more common.
A recent Journal of Clinical Oncology has a review on quality measures for symptoms and advanced care planning in cancer patients. To make a long story short, there are many measures, most of them seem reasonable (that's my gloss), however there's little evidence (yet) that implementation of these quality measures improves quality of care. The article does provide a nice collation of the many articles trying to develop quality measures, and may be a useful starting point for quality improvement projects.
Wednesday, November 15, 2006 by Drew Rosielle MD ·
Tuesday, November 14, 2006
For those of you who listen to NPR on the way home, you are often treated to insights into end-of-life issues. I believe that NPR is one of the media outlets that typically focuses on death and dying more than most mainstream media outlets. Well yesterday (Monday 11/13) there was a great story I heard on the way home. It was the story of Adrian Leon LeBlanc (requires Windows Media Player) who died in 2003. The story was narrated by his daughter, writer Adrian Nicole LeBlanc, who had taped some of the conversations as he was dying. The audio story is only under 13 minutes, so find yourself some quiet time and listen to it.
I think you will recognize the role of patient and caregiver in his story. As I listened to the story I recalled some of the patients and families that have impacted me through this work. It is also a good reminder of the powerful relationship between caregiver and patient, and how talking can be an important part of the 'work' that people do as they approach death for themselves and their family members.
2. The answers for the wordgame I posted from last week are in the comments section of this post. That's for those of you who can't help but look immediately for the answers. In case you missed it here was the wordgame:
(More details than the original post)
Palliate (PAL-ee-ate: To make less severe or intense; alleviate)
Average mark 28 words
Time Limit: 45 minutes
Can you find 42 or more words in PALLIATE?
Tuesday, November 14, 2006 by Christian Sinclair ·
Monday, November 13, 2006
Some shameless self-promotion (Christian, this constitutes a free-pass for one act of shameless self-promotion on Pallimed).
My institution, the Medical College of Wisconsin, has openings for our palliative medicine fellowship for the 2007-8 year and beyond. Our fellowship is an accredited, one-year clinical fellowship that gives a good mix of inpatient & outpatient palliative care, as well as hospice experience. We have an established palliative care service which is well-integrated into our major teaching hospital; a swell group of experienced palliative care physicians and nurses; a good mix of didactic and supervised clinical time; educational training; and research opportunities. I did my fellowship here and felt like I received great training. And, contrary to popular opinion, Milwaukee totally rocks.
If you're interested please contact me via email. Or you can skip the middle-man & contact our fellowship director directly, Dr. Lisa Marr, at (414)805-4607 or email@example.com.
Monday, November 13, 2006 by Drew Rosielle MD ·
Friday, November 10, 2006
The Journal of General Internal Medicine has a trial of changing a DNR order policy at a hospital in New York. For those of you not familiar with the NY situation--there is legislation there that most hospitals have interpreted to mean that a patient (or their proxy) has to sign a consent form in order for a physician to write a DNR order. These forms are notoriously long and complicated. (In contrast, at my hospital, while there is a special DNR physician order form, patients don't have to sign anything, and there is a policy in place allowing physicians to write a DNR order against a patient's wishes if resuscitation is felt not to be medically indicated.) In this article the hospital developed a new DNR order form and policy which greatly simplified the process, allowed for verbal 'consent**' only, and prompted physicians to consider multiple categories of treatment limitations as well as palliative priorities (pain, psychosocial & spiritual concerns, etc.). The authors compared what happened at their hospital with a similar 'control' institution which did not change their DNR policy. In short they found that the policy was well received and improved some markers of quality of care, as well as rates of DNR orders. Intriguingly, they looked at surrogate (patient family members, etc.) stress regarding DNR orders and found it decreased after the policy change. This is modest empiric evidence for a long-standing clinical observation--that particularly regarding what are viewed as 'life or death' decisions (such as DNR orders, terminal extubations, etc.) family members generally want physicians to make and be responsible for these decisions (so that the family member doesn't feel like s/he is responsible for someone's death--acknowledging of course that they almost certainly aren't responsible for the death, but they don't want to feel like they are being asked to 'choose'). That sentence was too long, I apologize.
**"Consenting" to a DNR order is somewhat of a weird concept. Consent, in medicine, usually refers to a patient understanding and agreeing to a medical intervention. In this case, however, it is about not using a medical intervention which is unlikely to benefit a patient in any material way. Surgeons 'consent' patients to operate; when surgeons choose not to operate because the risks outweigh the benefits of surgery they don't consent the patient to not operate--it's just considered good medical care.
JAMA has a couple of articles this week. First is a ' coda' for the recent Clinician's Corner piece about spirituality & dying. Then there's a new Clinician's Corner/Perspectives on Care at the Close of Life piece about palliative care for frail elderly adults. It's discussion of hospice care for those with a functional decline but no 'clear' 'terminal' diagnosis is good, and good to see in a general journal.
I stumbled across this press release touting antioxidants as analgesics (some researchers gave some mice a whole bunch of antioxidants and then injected formalin subcutaneously and found that the mice exhibited fewer pain behaviors). It's an interesting bit of research but will likely end up on the trash heap of novel human analgesics, although I hope not. The press release is peppered with a lot of "opioids=addictive=bad" language.
On Monday I took the ABHPM's final board exam before it dissolves and is replaced by the new ABMS hospice & palliative medicine board. It's the end of palliative care's infancy (in the U.S.) which is exciting, but sad to see the ABHPM undergo its planned dissolution. It does mean--assuming I pass--that I can proudly tell my palliative medicine fellows ~30 years from now (some of whom may not be born yet) that I am so old that I was boarded by the ABHPM (I'll reassure them that was long before we discovered antioxidants were fantastic analgesics).
Friday, November 10, 2006 by Drew Rosielle MD ·
Monday, November 6, 2006
A couple of things have crossed my path recently and each item is tied to the media exposure of hospice and palliative care. A colleague recently came up to me while I was attending our palliative medicine consult service and wanted to know why we were still calling ourselves 'palliative care.' Here is a little reenactment (you must provide your own voices):
Colleague: "You guys should really think about changing your name."
Me: "You mean 'Palliative Care Team'? Why's that?"
Colleague: "Well, no one really knows what it means. Why don't you call it something that people already know the name of, like what's that the oncologists call their thing?"
Me: "Supportive Care?"
Me: "Well our team has been the palliative care team for seven years so we have a lot of time invested in that name and our number of consults have gone up quite a bit over that time. And palliative medicine was just approved as a medical specialty so there should be a lot more support for that name. Also I get a chance to define palliative care to others when they ask 'What is palliative care?' as more than just end of life care or help with cancer care."
Colleague: "Oh that's good news about the approval of the specialty. Just think about that name change thing. It might help you."
So what can we do as palliative care specialists, palliatist, palliativists, or whatever you want to call our field? Well James Hallenbeck, MD has a good recent post over at Growthhouse entitled "Got Palliative Care?" In it he summarizes how our field can take some points from advertising (the Got Milk? campaign) and applying it to demonstrate our principles. Now I don't know what kind of copyrights exist for this sort of thing, but I really like the ideas he presented in his blog. I would do a disservice by summarizing his blog. You should take the time to read it yourself. Besides he writes much better than I do!
Also my Uncle recently sent me a magazine for the Denver Metro area called 5280 (mile high connection, I guess.) He sent it because it featured the top Denver doctors. Well I quickly thumbed through it and found no listing for Hospice or Palliative Medicine physicians. I also found a San Diego Magazine listing their top doctors. Again Hospice or Palliative Medicine doctors listed. Same with Ingram's top doctor's for Kansas City, although their list was much more exclusive. So I challenge all Pallimed readers to contact your city's newspaper or high-society magazine and ask them to include hospice and palliative medicine as a specialty to select physicians. Not that this particular recognition of an individual doctor means anything but if it gets the word out that palliative medicine is a recognized specialty we will start to see that it belongs as a standard part of medical care of the ill as Drew has mentioned in these posts many times before.
And for fun we have a word puzzle, since it is National Hospice and Palliative Care Month (President Bush did sign a proclamation by the way.)
How many words can you make from this word:
The answers will be provided in one week, so go ahead and try at home.
(I found this puzzle in the newspaper last week. At least the puzzlers are spreading the word.)
Monday, November 6, 2006 by Christian Sinclair ·
Friday, November 3, 2006
Several things in brief before the weekend:
Pain has a prospective study looking at the natural history of post-herpetic neuralgia. It followed 94 older patients who had shingles and were felt to be at high risk for PHN (defined as having acute pain over 2/10 for at least 48 hours). 30 patients had PHN at 6 months (defined as any residual pain); however only 2 patients had pain at least 3/10 at 6 months. A substantial number of patients had pain for much of the study period (although most had resolved by 6 months). An interesting finding of this study was a suggestion that pain decreased at the same rate for the subjects: the worse your pain was at baseline the longer it would take for your pain to go away, but it overall steadily decreased. Overall this study adds to the perception that PHN that is both severe and prolonged is rare.
Lancet Oncology has a "personal view" piece about truth telling in oncology . It's pretty good.
For you methadone junkies out there (poor choice of words I guess...):
Therapeutic Drug Monitoring has a study on methadone enantiomers in hospice patients. This is a small study of 13 hospice cancer patients who were switched to methadone from morphine. I am sure there are many elements to this study which will be of interest to the more pharmacologically minded, but I took note of it because there still remains such little data on switching to methadone that everything published is of interest. (The study hails from my familial homeland of beautiful Perth, Australia.) Overall the study lends support to the consensus on methadone: a) final morphine:methadone "equianalgesic" ratios varied widely (final mean ratio was 5.2:1, range 1.3-11) between patients; b) methadone's potency generally increased as baseline morphine dose increased; and c) methadone's half-life is very long (averaged in the 30-50 hour range). For what it's worth, about half the patients achieved "optimal pain control" with the switch but I can't say the study is a resounding endorsement of rotation to methadone. Analgesia seemed to have little relation to methadone serum level. One patient had super-high methadone serum levels but this was not apparently clinically evident. Despite these two findings the authors for some reason recommend following methadone levels in hospice patients, but their study seems to support the futility of doing this as far as I can tell.
The Journal of General Internal Medicine has an entire supplement issue on spirituality and HIV/AIDS patients .
Friday, November 3, 2006 by Drew Rosielle MD ·