Thursday, April 27, 2006
The BBC recently put together a documentary on death and dying entitled How To Have a Good Death.(DEAD LINK 04/2010) It is based on a British poll surveying attitudes and actions around death planning. Some of the more interesting things on the site include 1-2 minute video clips from people talking openly about their own views on dying, bereavement, and Do-It-Yourself Funerals (aka Green Funerals), something I had only been privy to once while practicing in North Carolina. Apparently this is a growing phenomena in the UK and Australia as there are numerous websites based out of those two countries, but I did not find a lot of American based sites.
I thought the focus on after death planning was interesting because it is a side of death that often gets little attention in the medical world because it is during a time after our interventions are complete. I have always wanted to spend some time with a funeral director and see the process of what happens after a patient dies. Obviously not because I have a morbid curiosity but as a palliative medicine physician doing a lot of counseling and education of families I believe having a full understanding of the entire process including social customs and processes around the time of death is important.
Have any Pallimed readers spent time with funeral directors or other aspects of the post-mortem process besides grief support?
Thursday, April 27, 2006 by Christian Sinclair ·
Tuesday, April 25, 2006
The current JAMA has a commentary on the legality of physician assisted suicide by Lawrence Gostin JD, particularly focusing on the Gonzales v. Oregon decision. (Previous posts on PAS are here, here, here, and here.) I can't say it adds more to the discussion than the NEJM article from a while back. Nevertheless it ends with this remarkable, and greatly appreciated, paragraph:
In many ways, discussion of physician-assisted suicide masks a far more important problem—the need to reliably and safely achieve effective relief of pain and suffering near the end of life. Multiple forces have stood in the way of effective palliative care such as physician training (stressing intervention over palliation), a rescue imperative, and the burgeoning development and promotion of life-saving technologies. Physicians have also feared criminal or civil liability for hastening a patient's death. Commenting on Gonzales v Oregon, President George W. Bush expressed disappointment at the erosion of a "culture of life." However, deep caring and relief of suffering by physicians at the bedside of dying patients may be a far greater affirmation of life. Modern medicine must evolve to constructively support patients in the dying process—a time of incomparable meaning and importance to the human condition.
Tuesday, April 25, 2006 by Drew Rosielle MD ·
Monday, April 24, 2006
A few articles from the current Archives of Internal Medicine...
There's a meta-analysis of trials involving oxycodone for cancer pain. The authors looked at the 4 (ahem) randomized, controlled trials involving oxycodone for cancer pain--3 compared oxycodone to morphine and one with hydromorphone. My gloss on their findings: no evidence of superiority of any of these agents over the other with regards to analgesic efficacy & side effect profile; side effects were common and problematic in all the trials and on all the agents; the studies support the idea that oxycodone is moderately more potent than morphine.
There's also a prospective study following patients' health and health care preferences over time. It is based on prospective interviews with ~200 elderly, community-dwelling people with severe, chronic illnesses (cancer, CHF, COPD) and some restrictions in their activities of daily living. The subjects were interviewed regularly for a couple of years and were asked to state the acceptability of a medical treatment if it would result in certain outcomes (mild functional impairment; severe disability; ongoing pain; severe cognitive impairment). One of the major findings were that severe cognitive impairment (inability to recognize family members) was across the board unacceptable to the vast majority of subjects (meaning that they stated they'd rather not receive medical treatment if that was the best outcome). Not surprising. The other major finding was that for those patients whose health status declined during the study severe disability became a more acceptable outcome. That is--as the subjects themselves became more disabled, disability became more acceptable. While this too isn't surprising and consistent with earlier studies, the authors discuss this as if it strikes a grave blow to advance directives because, essentially, people change. Not wanting to belabor this, I'll refer interested readers to previous comments on advance directives for my response to this.
And there's also a survey of European and Australian physicians' end of life decision making. It is one of those scenario based surveys (metastatic cancer patient, lacks decision-making capacity, 2 weeks to live, in pain, family asks you to terminally sedate them--would you do it?) whose results are too complex to summarize here. I am always skeptical of these surveys and wonder if they measure anything that's clinically meaningful. That being said, it's always interesting to look at them and see how many of the docs give what I consider shocking or obnoxious responses (4% of the Italian respondents said they'd give chemotherapy to a 'subcomatose' bedridden patient with 2 weeks to live even if this contravened their advance directive; 12% of the Danish respondents said they'd 'euthanize'--by their own [the docs', not the patient's] initiative--a conscious, communicative--albeit symptomatic and bedridden--cancer patient with 2 weeks to live). This last result in particular is so obnoxious that it makes me skeptical, again, of the clinical relevance of this type of research.
And finally there's also a brief survey article indicating African-Americans generally have less trust in health care providers than whites. Not strictly palliative care-related, but nonetheless of supreme importance for those of us for whom physician-patient trust is the bedrock of our practice.
All of these articles have cemented for me my impression that Archives publishes the highest number of palliative care-relevant articles of any of the major, general journals. Not necessarily the highest quality articles (I have no strong opinions on that), but definitely the most.
And one more thing:
For those readers who are interested in pain policy issues & the DEA, etc.--there's been a recent comment on a prior post that has several interesting links. Thanks, Dr. Alex DeLuca.
Monday, April 24, 2006 by Drew Rosielle MD ·
Tuesday, April 18, 2006
Pain has e-published ahead of print an interesting pre-clinical study about oxycodone vs. morphine for visceral pain. The purpose of the study was to compare morphine, an inert placebo, and oxycodone on pain tolerance in several different tissues. It involved 24 young, healthy subjects who were (on three separate occasions) given 30mg of oral morphine, 15mg of oxycodone, or placebo, and then subjected to a variety of stimuli (thermal, mechanical, and electrical in the skin, muscles, and viscera). Most notably, they had an experimental tube placed in their esophagus to apply different 'stimuli' to their lower esophageal sphinctor to induce visceral pain. As an example, the tube allowed inflation of a cuff in the esophagus to stretch it (this was their mechanical visceral pain model). Pain was induced in all the areas at 30, 60, and 90 minutes after blinded administration of the analgesics.
Morphine and oxycodone provided similar analgesia to painful stimuli to the skin and muscles, better than placebo. However--and this is why I'm blogging this study--oxycodone was more effective than morphine and placebo in the thermal and mechanical visceral pain model. Due to the way the study was designed I don't have a sense of the magnitude of this difference; however it was significant and specific to visceral pain (and not the other modalities suggesting that the doses used were equianalgesic for the other pain modalities). The authors query whether this is due to kappa-opioid receptor agonism on oxycodone's part (I don't really understand why this is other than some people believe kappa-opioid receptors play a special role in visceral nociception). Is this practice changing? No--but it's provocative, and one hopes for more research along these lines. It is, I guess, a reason to consider opioid rotation to oxycodone for more difficult to manage visceral pain (why not?).
As an addendum, I'd like to add that the authors made this statement about their choice of using oral opioids:
Furthermore, we anticipated that oral administration would decrease the risk for addiction compared to intravenous administration.
Is there something I'm missing here? Is 'creating addiction' really a concern in experimental pain research like this? This strikes me as excessively cautious--to be polite about it--but I'd be curious if anyone knows of literature about this risk of pain research...
Tuesday, April 18, 2006 by Drew Rosielle MD ·
Friday, April 14, 2006
Some digest entries from my back-log of PubMed updates...
There was a recent Gerontologist article about the (lack of) agreement between patients and their spouses about continuing dialysis in a variety of situations. It is from a survey of dialysis patients and their spouses; they were asked a variety of questions about continuing dialysis in a variety of situations (mild stroke, severe stroke, terminal illness, etc.). The spouses were asked what they would want for themselves as well as what they thought the patients would want. Essentially they found that the spouses' substituted decisions were more like what they would want for themselves, and less like what the patients wanted. Of note, across the board, the spouses chose to continue dialysis more often than the patients themselves did. All of this is pretty consistent with what has been shown before: proxy decision makers aren't right all of the time, and tend to want more 'aggressive' care than the patients.
The Journal of Cystic Fibrosis has an article on end of life care for adult cystic fibrosis patients. It is based on qualitative interviews of patients, families, and CF care providers about what is important in end of life care for these patients.
Lancet has a review of 'chronic disorders of consciousness' (persistent vegetative state, minimally conscious state, etc.) It's a good primer.
The FDA has just approved a methylphenidate transdermal system (for ADHD). This is the extent of my knowledge of the product. Duragesic on one forearm and Daytrana on the other?
Friday, April 14, 2006 by Drew Rosielle MD ·
Wednesday, April 12, 2006
The New England Journal of Medicine has published a "Perspectives" piece about a topic near and dear to those of us involved with the electronic dissemination of medical information--the ongoing debate regarding free, electronic access to scientific/medical research. Essentially it's a (reasoned) attack on "open-access" purists who argue for immediate and free access to all scientific publications. No one really argues with the fact that this would be swell, nor are there many out there (publicly) arguing that long-term restrictions on open-access to scientific literature is desirable or feasible (the NIH 'asks' people it funds to make their publications freely available after 1 year; Annals of Internal Medicine gives open-access to research after 6 months, etc). The problem is that there is no real viable models out there accounting for how to pay for immediate open-access for all literature, given that the publication process can be several thousand per article. Anyway this piece is appropriately available in free full-text online if you want to read more.
I have a simple solution: Google ads!
I am fortunate enough to be associated with a medical school whose library gives me pretty good immediate online access to most of what I want to read, but I wonder how my colleagues in private practice manage when they want to read something and find it costs $20-30 to order a single article. I've had this wonderful privilege since starting medical school and would convulse without it--this blog certainly owes its existence to my library providing this service. Perhaps Christian will comment--I've never asked him how he works this at his hospice...local medical school affiliation?
The Journal also has 2 book reviews on palliative care books.
Wednesday, April 12, 2006 by Drew Rosielle MD ·
Tuesday, April 11, 2006
Archives of Internal Medicine has published an interesting article comparing terminal (palliative) sedation and euthanasia in the Netherlands. It is based on interviews of ~400 Dutch physicians who answered questions about their patients who had received terminal sedation or euthanasia, including the reason the docs thought the patient requested it or why it was otherwise used (as many of the terminal sedation patients couldn't request it). There were a few minor reported differences in symptoms etc. between the groups, but prominent differences were found between groups regarding the reasons for terminal sedation or euthanasia. Loss of dignity and dependency were much more associated with requests for euthanasia than terminal sedation: 63 vs 18%, 33 vs 6%. There are some other interesting findings--17% of the decisions for terminal sedation were made deliberately to hasten death (one wonders if this represents euthanasia-like acts for patients unable to request it or whether this was for people for whom hastened death was a welcomed 'side effect' of the terminal sedation). Additionally, the docs reported how much they thought death was actually hastened (deliberately or not) by terminal sedation--73% thought it was by less than a week. 70% of euthanasia patients had their deaths hastened by over a week, and 22% by over a month. Over 90% of the patients receiving terminal sedation died within 7 days.
Of course all of this is based on physicians' recollections of their patients, and subject strongly to the vagaries of memory and bias. Additionally, it's always been my opinion that the Netherland's experience with hastened death (I am not trying to set off an argument about whether or not terminal sedation is hastened death) is unique and not necessarily directly applicable to North America. Nevertheless, the prominent differences here regarding dignity/dependency are suggestive, and further add to the growing framework (can we call it now "well-established"?) that requests for hastened death are not to relieve unrelenting 'suffering' per se, but to preempt a dying process which is felt to be irretrievably insulting to one's dignity. It also gives a sense that for the most part terminal sedation is not 'slow' or 'light' euthanasia. In one of the only places on earth where they can be compared side to side terminal sedation is used for different reasons, with different goals, and in different patients than euthanasia.
2) BMJ has published a couple of letters about the tolerability of low molecular weight heparin in 'palliative patients' about which we had a lively discussion in February. I wanted to highlight one in particular which, while not exactly validating my ravings on this article, makes some more reasoned criticisms, based in the evidence, about the advisability of this practice.
Tuesday, April 11, 2006 by Drew Rosielle MD ·
Monday, April 10, 2006
Normally we at Pallimed are right on top of things, finding you the most interesting and best studies from the world of hospice and palliative medicine, but one slipped under our radar, probably because it does not seem to immediately relate to palliative medicine.
A new study was released last week about intercessory prayer for healing/improving outcomes in patients. The study was published in the American Heart Journal in the April issue. The Study of Therapeutics Effects of Intercessory Prayer (STEP) took patients about to undergo CABG and randomized them with informed consent into 3 groups.
1) Those receiving intercessory prayer but blinded (prayer but uncertain or PBU)
2) Those not receiving intercessory prayer but blinded (no prayer but uncertain or NPBU)
3) Those receiving prayer but unblinded (prayer but certain PBC)
Now what is intercessory prayer? Basically it is the act of praying on behalf of another person in an attempt to intercede in their life usually through a benevolent divine being, as opposed to 'black spells', the 'evil eye' and 'curses' which are used to bring harm upon another. There have been a couple of well publicized studies (often with cardiac patients) including one by a local Kansas City doctor William Harris (an officer of the Intelligent Design Network) in the late 1990's. The STEP trial is the largest blinded randomized control trial to date to study intercessory prayer.
In the STEP trial, the idea was to test if it was the prayer itself or the knowledge/certainty about being prayed for that was being tested. The primary outcomes showed no difference in complications or 30-day mortality for groups 1 & 2 (PBU and NPBU). Thus most media outlets reported that prayer has no effect (here, here, and here).
But the researchers also found that Group 3, (PBC) who knew they were being prayed for had more complications (59%) than either Group 1 (PBU) (52%) or Group 2 (NPBU) (51%).
In the discussion section the authors state that the statistically significant difference "may have been a chance finding." A chance finding? I have never seen that offered as an explanation for a statistically significant finding in a research study. Could it be that the prevailing notion that prayer as a therapeutic intervention has been presupposed as only causing benefit without the potential to cause harm? Was it the certainty of being prayed for that caused the harm? Something like, "Oh my gosh...someone is praying for me? It must really be bad! Maybe I will worry so much to cause more complications?" The study does not go into detail on this matter. The authors are even quoted as stating 'They can't come to any conclusions and that the effect of prayer is neutral.' Which is interesting given the statistically significant finding noted above.
Obviously one of the difficulties in studying intercessory prayer is that we have no scientifically plausible mechanism for the effect. While this should not stop us from studying that which we do not know, it should encourage us to be more free of bias since there is so much uncertainty in this area.
Multiple other criticisms abound from pro-prayer camps and non-prayer camps but if you read this far your attention span is probably getting very very short, so I'll just summarize some of them briefly, you can do your own exposition:
- We can't study God. He is unknowable.
- We shouldn't test/predict God.
- The prayers were prescribed as opposed to allowing the prayers to use their custom prayer thereby diminishing the possible effectiveness of prayer.
- We should not give the patients the knowledge of prayer because that may harm them.
- Different denominations (Catholic and Unity) should not be used. It may decrease the effectiveness of prayer.
- 45% of patients refused entry into the study.
- Not published in JAMA as it was initially submitted to them.
So what does this have to do with palliative care? Well, hospice and palliative care is very open to the role spirituality and religion play in the lives of our patients and their families. Often we talk of reframing hope and praying for multiple different outcomes not just cure, especially when our experience and knowledge inform us that survival is very unlikely. I never tell people to stop praying for miracles but I often encourage them to pray for other things as well. Studies like this have the possibility for showing there is little demonstrable effect from prayer or that there is a profound effect, but the power of prayer and religion in healing (and here I mean curing) is so great that regardless of the money spent you will never be able to unseat the strongly held beliefs of those that believe in the power of prayer and those that do not.
And I am done writing.....
NB: The $2.4M study was founded by the Templeton Foundation, designed to study the interface between science and religion.
NB: In the same issue here are the names of some of the other study acronyms: GRACE, ESSENCE, and MIRACLE. No joke. And none of them are studying prayer. Kind of funny coincidence.
NB: Free PDF editorial of the article in AHJ is here.
Monday, April 10, 2006 by Christian Sinclair ·
Thursday, April 6, 2006
Archives of Internal Medicine published a good, comprehensive article about reconsidering medication appropriateness late in life. While mostly from a Geriatrics perspective there is obvious overlap for any patient with prognosis of hours to months as well. One of the great things about an article like this is that it begins a discussion and framework that will hopefully be molded and shaped into future research studies on how to best discontinue medications at the end of life.
There are very few articles on the subject. Annette Vollrath and I started a series to review d/c of meds in various areas, but it proved to be a monumental task. So far we have one article published on the discontinuation of lipid lowering agents.
The commentary article focuses on four pillars for deciding when a medicine is appropriate near the end of life.
Remaining Life Expectancy
Time Until Benefit
Goals of Care
The was no strong focus on ethics in the article but really more of a utilitarian approach. I hope to see more articles like this to help guide our medical decisions.
I have seen in the fentanyl patch insert that it strongly advises to never convert someone from a fentanyl patch to other opioids because it has not been well studied. Well that is a pretty convenient 'dead-end' approach to keeping someone on your medication forever! I have thought about suggesting to the FDA a new section for medication inserts:
"Indications and Methods for Discontinuation"
I know this is unlikely to happen anytime soon, but a boy can dream.
Thursday, April 6, 2006 by Christian Sinclair ·
Tuesday, April 4, 2006
Ok, so this is off topic but I cannot stop thinking about this paper, and it does involve opioid antagonists,** so I'm filing this under "suggestive new evidence regarding endogenous opioid physiology."
I have long been suspicious that tanning has addictive qualities, or at least involved some psychopathology. Actually I always thought it was a form of body dysmorphic disorder--I assumed there must be some reason my wrinkled, baked-brown-leather acquaintances and patients kept on going back to the tanning booth. I'm not talking about the casual users who keep their tans going over winter in the Midwest for instance, but those UV ravaged, burnt orange hued, deeply creviced people that you can't imagine get up in the morning, look in the mirror, and say "Back to the booth today!" Perhaps this is small-minded of me, but I always assumed something was wrong.
Well, the Journal of the American Academy of Dermatology has fired an initial salvo, with an article demonstrating opioid-withdrawal syndromes in chronic, heavy tanners. The story goes like this: UV radiation induces cutaneous endogenous opioid production & clearly some dermatologists have noticed that some people tan more than seems necessary to maintain a 'healthy' tanned appearance. The researchers took 8 heavy tanners (8-15 times a month!) and 8 light tanners and randomized them to UV or non-UV tanning beds, as well as gave them escalating doses of naltrexone. Essentially they found that 1) heavy tanners preferred the UV beds even when blinded to the fact they were UV, 2) naltrexone blunted the heavy tanners' preference to the UV beds, and 3) half the heavy tanners had an opioid-withdrawal-like syndrome with naltrexone. Of course the numbers are small, and the researches may have happened to stumble upon a nest of "Oxy" abusing tanners inadvertantly, but this is pretty damn interesting and personally satisfying nevertheless. I can already imagine the implications of this including UV booths in hospices (ha ha).
I read this on Medscape today, then looked around to see if it is being picked up by other news outlets, and indeed it is. And, predictably, its findings are already being misconstrued including the headline " You can get hooked on tanning because it gets you high, study says ."
**It sort of reminds me of the reports of opioid-withdrawal syndromes in opioid naive patients given opioid antagonists for cholestatic pruritis (suggesting that endogenous opioid levels are substantially elevated in cirrhosis/cholestasis & responsible for the pruritis).
Tuesday, April 4, 2006 by Drew Rosielle MD ·
Some digest entries...
1) Lancet has a critical review comparing enteral vs parenteral nutrition in a variety of patient populations. It's quite technical, and not particularly oriented to the supportive-cancer (let alone palliative) reader, but for those of us who follow this literature it is a nice overview.
2) Lancet Oncology has a review of oral/dental complications of head and neck radiation, covering the pathogenesis of the complications, prevention, and treatment. Helpful for those of us who do a lot of supportive cancer care, but who aren't oncologists.
3) March PC-FACS are out.
4) Internal Medicine News's April issue has 2 articles about palliative care (focusing on interviews with Diane Meier and Sean Morrison)--about its growth in the US & our impending official subspecialty recognition. (IMN is a free, non-peer-reviewed, industry-advertising-supported news magazine published by Elsevier which spontaneously appears on the doorstep and desk of many Internal Medicine docs in the US. You may need a free login to read the articles which aren't yet, unfortunately, posted on the website although the magazine arrived on my doorstep a week ago. But, as usual, I'm not organized enough to remember to keep on looking on the website to see when the articles are posted...).
5) I also want to highlight the comments from the April 1 post, and particularly want to direct readers who find that topic interesting to the Gerontologist article Paul McIntyre suggests--it's very thought-provoking. Thanks, Paul.
by Drew Rosielle MD ·
Saturday, April 1, 2006
Well I read the article I mentioned March 29 regarding patients' preferences for life-prolonging care as a barrier to hospice enrollment. It uses data taken from a study of ~200 community dwelling patients (with an equal mix of cancer, CHF, and COPD diagnoses--all had ADL limitations and 'limited' life expectancies) whose clinical courses and treatment preferences were followed for up to ~2 years. The subjects were serially asked treatment preference questions based on scenarios involving "minor" & "major" treatments with different outcome scenarios, as well as questions gauging fear that life will be prolonged by machines. There were over 800 assessments total of these 200 subjects.
A lot of data were generated. On the dismal side, only 25% had been informed that they were likely to die from their life-limiting illness & only 9% had knowledge that hospice care was an option. Not surprisingly a desire to limit "low-burden" treatments was associated with subsequent hospice enrollment (although this represented only 3 of 16 patient-assessments in which this desire was expressed). ("Low-burden" here means a brief hospitalization with IV treatments, etc.). A desire to limit "high-burden" treatments was also associated with hospice enrollment, although again the numbers were very small (5/28). This gives a general sense that 1) the subjects generally had "hospice-inappropriate" treatment preferences, and 2) even for those patients who expressed 'hospice-appropriate' treatment preferences, hospice referral rates were very low. Also, for the non-cancer patients, a fear of being 'kept alive on machines' was associated with hospice referral. This further gives a sense of a group of people for whom hospice enrollment was seen as a way to avoid feared interventions, as opposed to a "positive" choice of the best way to be cared for while facing a life-limiting disease.
The rates of hospice referral in the study were so low that it's really difficult to interpret all of this. Indeed, given that 9% had knowledge of hospice care as an option, and 75% didn't know they had a life-limiting illness, is it any surprise that the rates were so low? One wonders if--after those 16 assessments in which patients stated they didn't even want 'low-burden' treatments--patients were educated about hospice/treatment choices, referrals would have been different.
That being said, Casarett & Co. conclude with discussing how the hospice model works very poorly for many people with advanced chronic diseases such as CHF & COPD, who need a lot of care & support & help with decision-making, but for whom a few days in the hospital with IV antibiotics or furosemide can be entirely medically reasonable and (as this study suggests) consistent with many patients' treatment preferences. This is clearly a major problem with the current infrastructure for caring for people with chronic, life-limiting illnesses, and I'll refer people to Joanne Lynn's work for more about this (here & here).
P.S . Not surprisingly I have not heard back from blogspot regarding the spam-post...I'll probably leave it up another week then can it so Pallimed can be blemish-free. I really hope this doesn't happen again. That being said, I do have some really cheap inkjet cartridges if anyone's looking....
Saturday, April 1, 2006 by Drew Rosielle MD ·