Monday, April 30, 2007

Palliative care in developing countries; Patients' talk on CPR; History of palliative care

Sorry about the sparse posting last week, I've got a stack of items piling up that I'll try to get thru this week.

The current Journal of Public Health Policy has a special section on palliative care in developing countries (free full-text is available). The articles are mostly short and descriptive, or calls for more palliative care. The shocking (at least to naive me) lack of availability of opioids in many countries is frequently cited. I assumed there would be discussion of the debate over increasing resources for palliative care in areas where many people die of treatable--if not curable--diseases (e.g. HIV, many cancers) but this is completely absent from the issue. In resource-poor environments--where should the resources go? I'd love to say that, for instance, improving access to antiretrovirals and palliative care should occur simultaneously. Acknowledging this isn't going to be the case I personally am not sure how those precious resources should be divided. The fact that this is a zero-sum game is itself the problem of course; identifying it as such however does not bring one any closer to a solution. I'll nevertheless proffer one though in the spirit of Christian's recent US political speculations: the US goes single-payer, sends the money it saves abroad to improve the health care of developing countries, including palliative care.

Qualitative Health Research has an interesting article about dying cancer patients' 'talk' on CPR and DNR orders. As the journal's name would imply, this is qualitative research, involving a single researcher interviewing 28 dying Australian cancer patients about CPR and DNR orders (most, but not all, subjects had DNR orders). The paper itself involves a 'discourse analysis' of the subjects' talk on CPR, looking at themes that emerge. I'm in no way qualified to critique the paper, and so I won't. I will say it's an interesting look into a world (talking with patients about CPR and code status) most of are are probably familiar with, and there's much there that I recognized. I was particularly struck by this (it is describing a patient):

...[H]e drew on some concept of quality of life ("the way I feel today ...I've got tomorrow to look forward to") to justify a current preference for resuscitation, construing his assessment of his life as the pivotal issue. Invocation of these factors works to reaffirm the primacy of patient autonomy in these decisions, as well as prioritizing subjective judgments about the value of life: having something to live for justifies resuscitation. One consequence of this is that the mere assertion by the patient that some aspect of their life holds worth will suffice to stymie moves to establish DNR orders....


Lancet Oncology has a lovely review of palliative care's history in oncology. It opens with this:

In only four decades, the care of patients with advanced malignant disease and the management of their symptoms during the trajectory of illness has moved from the margins of oncological practice to the very centre of modern cancer care.

While that seems a little grand to me, the remainder of the article is really interesting and actually quite a whirlwind summary of palliative care's history and the current scope of palliative care services and programs worldwide, complete with full-color pictures.

Monday, April 30, 2007 by Drew Rosielle MD ·

Tuesday, April 24, 2007

Video-assisted advance care planning; Drug burden in the elderly; Pain doc trial; Death & the media

Archives of Internal Medicine has a couple notable articles. First is an intriguing one on using instructional videos in advance care planning for patients with dementia. 120 adult outpatients (median age 58, 70% women, over half non-white) who didn’t have family members with advanced dementia were given verbal information about advanced dementia and asked, essentially, if you were in this state would you want full, aggressive life prolonging care, less aggressive life prolonging care (hospitalization, antibiotics, etc. but no CPR, vent, or ICU level care), or comfort-only care? Then they were shown a video of a patient with advanced dementia being cared for (you can watch the clip here) and then were asked the same thing.

After hearing a description of dementia, about half said they’d want comfort care and 21% said they’d want ‘full’ life-prolonging care. After the video 90% said they’d want comfort care and none said they’d want ‘full’ life-prolonging care. Before the video, somewhat more Latino and African-American subjects said they’d want full life-prolonging care; this was also true of the more religious and less educated subjects. After watching the videos there were no differences between any groups (ethnic, religious, education-level) regarding preferences.

These are quite dramatic findings, and quite exciting. Not only were the outcomes quite pronounced, they also were strong enough to nullify religious/class/racial differences in treatment preferences which are frequently identified in the advance care planning/treatment preferences research literature. I’m excited to see where people take this. One has to be somewhat cautious. You can look at the video yourself and decide how accurate or frightening it was—to me it seemed a rather accurate and straightforward depiction of someone with far advanced dementia—but one wonders if there was something about this particular video to generate such dramatic outcomes. You’d like to see these findings repeated with different videos, as well as with different disease categories. Of course this sort of intervention lends itself well to dementia; I’m trying to think of other terminal illnesses for which it may be amenable. It would be tough to depict in this way CHF or COPD or cancer for that matter…. It could be done with CPR itself though but the problem there is a focus on the intervention and not its outcome….

The other article is about the development of a “drug-burden index” in the elderly. It involved analyzing the drug use of >3000 elderly (average age 73) community-dwelling adults along with their functional status. Interestingly, these subjects had to have pretty good function in order to be included in the study; they had to be able to walk a quarter mile and be independent in their ADL’s. Anyway the authors found that function (both physical and cognitive) declined in this group in the patients on a higher number of drugs, but that this association was all caused by sedative and anticholinergic drugs—once they removed these from the mix the actual number of drugs didn’t predict functional status. Comorbid illness didn’t have any effect either independent of anticholinergic or sedative drugs. The take-home point is a well-established one: anticholinergic and sedating drugs cause problems in the elderly. Taking a skeptical stance, however, you could argue that this research simply establishes an association between these agents and poorer functioning—causality is not established—and you could argue that, perhaps, maybe the poorer functioning adults were that way because of pain and because of their pain they took more sedating/anticholinergic meds.

The NY Times has an article on the Hurwitz trial & some of the testimony recently given about his practice. It’s quite dramatic and includes the story of a patient that was treated both by Dr. Hurwitz and by one of the prosecutor’s expert witnesses (another pain doc). The two doctor’s treatment approaches are starkly contrasted; it’s pretty damning of one of them (I’ll let you read the article to find out who).

(NY Times articles are available free online for about a week.)

(I was sure we had blogged about this trial before although for the life of me I can’t find it—he is a pain doctor who was criminally convicted of conspiring to distribute opioids etc etc whose conviction has recently been overturned and is going through a re-trial. An overview is here.)

Continuing the last post’s thread about death and its place in our society, the Guardian recently published two editorials about death, mourning, and the media (triggered by last week’s mass murders in Iraq and Virginia). Paul McIntyre, who let me know about these, pointed out that they have a rant-like quality—written from a sense that something is deeply broken with our culture & death. Given that, it is interesting to see palliative care mentioned in the midst of these (not necessarily inaccurate) rants....

“Attitudes to death and mourning grow odder the rarer dying young becomes. There is less sense of proportion about the risks of dying, or about the inevitability of death itself, even when people die in old age. The temptation is to regard every death as avoidable, deny any accident is ever accidental, always find someone to blame, and hunt down that doctor in charge. …At the same time, the public dare not face up to the reality of the prolonged agony modern medicine imposes on the dying. Until it happens to them or their parents, people fondly imagine morphine or palliative care will always ease the end. That fallacy means many will enter the grave via the torture chamber, for failure to demand the legal right to die at a time of our own choosing. People no longer know how to approach death and its rituals….”

Tuesday, April 24, 2007 by Drew Rosielle MD ·

Friday, April 20, 2007

BMJ on the DEA, delirium, and healing the world; Lancet on morphine & frailty

A brief summary of several notable pieces from the most recent BMJ and Lancet. And a note that one should not look at the photos linked to from Christian's post unless one is in a position where it is safe to cry for 10 minutes, as I did sitting at my computer at work this morning. Luckily the palliative care offices here are (kind of) a safe place to sit and cry at one's computer, but I realize not everyone's offices are. Thank you, Christian, for letting us know about the photo series.

First is an editorial about DEA regulation of opioid prescribing in the US, arguing it is onerous and leads to poor pain management, while acknowledging the therapeutic controversies around opioids for chronic non-malignant pain. It mentions the infamous FAQ affair.
"Friction between regulators and medical providers is perhaps inevitable, as they both have noble yet conflicting goals—the one to control diversion, the other to preserve treatment for pain. As drug misuse becomes a greater problem, legislators react by tightening regulations. The American experience teaches that over aggressive regulations that ignore legitimate needs for opiates compromise doctors' ability to treat pain. As the pendulum has swung here between medical underuse and overuse, patients have been harmed. Now that it is becoming clear that the outcome of chronic opioid treatment is often poor, studies are urgently needed to investigate who benefits and under what conditions. The bigger question may be whether regulations have succeeded at all in controlling drug misuse, but the more immediate question for doctors in the US and elsewhere is how they should control their own prescribing so that interference by regulators does not discourage appropriate medical use of opiates."

Second is a brief 'observation' on reintegrating death (culturally) into 'Western' society, focusing on the book A Social History of Dying which seems pretty interesting. Palliative care is mentioned, sort of, as a remedy for our lack of 'integration' of death into our society, which, sort of, makes me nervous. I realize there are people within our community who feel deeply that death & dying are 'broken' in our culture and feel that palliative care is or should be a remedy for that. This seems like an incredible tall order and a set up for failure, not to mention a vast overestimation of the scope and influence of the palliative care movement. Deep cultural, economic, and scientific-technological changes have caused all of this and a scrappy movement to improve the medical care of dying patients seems unlikely to change much. It may be a palliative for this, an anodyne, but likely not much else. Last fall at the Montreal conference there was a distinct current of despair and anger about just how broken death & dying are in our ('Western') culture which was linked to, among other things, secularization. While I don't necessarily disagree with this I was confused as to why it was being laid out at a palliative care conference--how were we going to 'fix' this? Should we be even engaged as a community in trying to 'fix' this? Caring for dying people, as whole, spiritual people, in an interdisciplinary way, including spiritual care, does not mean we are healing the world or the dislocations brought about by several centuries of capitalism, migration, secularization, and technological change. Perhaps a worthwhile project, but not one we should set ourselves up as being a part of in my humble opinion.

There is an 'interim summary' and update about a NHS project in the UK to improve palliative care services in the community via primary care practitioners.

Finally there's a clinical review of delirium in older people. It's a practical review of the topic and doesn't add much to the recent NEJM one (the papers share a common author). It would be a nice addition to one's teaching file though for medical & other students.

Lancet has an editorial about one of my favorite topics: morphine and the myth of hastened death and why it seems to be so persistent in our culture, even the larger medical culture. It's brief, but good fighting words, and I'm glad to see it in the Lancet. There's also a brief bit on the concept of fraility in the elderly, arguing the controversial point that it is a useful concept medically--a discreet medical condition/syndrome with its own evaluation and therapy.

Friday, April 20, 2007 by Drew Rosielle MD ·

Thursday, April 19, 2007

Pediatric Hospice - Pulitzer Prize

This is a short post, but an important one. The 2007 Pulitzer Prize for Feature Photography was awarded to Renee C. Byer of the Sacramento Bee for her photojournalism of Derek, a 10 year old boy with cancer and his mother Cyndie.

This set of photos reminded me how important our work is in the field of hospice & palliative medicine.

I am lucky enough to work for a hospice with a strong pediatric program with great pediatric nurses. Even though I am an internal medicine trained physician, I try to make home visits for these pediatric patients and their families, and to support our pediatric team. We need more pediatricians who want to learn more about palliative care.

These photos just reminded me to thank all those who care for pediatric palliative care patients.

(Thanks to Kevin MD for the link via Graham)

Thursday, April 19, 2007 by Christian Sinclair ·

Wednesday, April 18, 2007

Chondroitin for DJD; Fecal incontinence

From the chronic pain world....
Annals of Internal Medicine just published a metaanalysis of randomized, controlled trials for chondroitin for osteoarthritis pain (22 trials, over 4000 patients, median dose of chondroitin 1000mg daily, median duration of treatment 25 weeks). Basically they found (surprise!) a lot of heterogeneity between the trials but when they looked at the better quality trials (the larger trials which had intention to treat analysis & good allocation concealment) therapy with chondroitin didn't seem to have much effect. They looked at their data in many ways, and it seems that chondroitin probably has a mild effect compared to placebo, but insofar as this effect diminishes with larger, better designed trials it seems highly probably that this effect is minimal and not anything one would advocate for their patients. Doesn't diminish traditional analgesic use, etc. It's a good example of how small trials can be misleading, particularly for agents that are of marginal benefit.

Anyway, none of this is very interesting. The metaanalysis is worth reading for other reasons: maybe it's been a while since I read a metaanalysis in Annals but this one was actually a treat to read. The authors describe in language, understandable to non-statisticians (something absent from many a metaanalysis), all the different analyses they did, why, why and how they did exploratory analyses, what they mean for interpreting this large body of heterogeneous data, what the research implications of all of this is, and came up with realistic clinical recommendations based on their findings (much more helpful than the annoying conclusion to many a Cochrane review 'there are insufficient data to support the use of X for Y'). I may not have learned much about chondroitin but did about metaanalyses.

The NEJM has a review on the management of adult fecal incontinence. It spends most of its time on fecal incontinence due to neurologic conditions (strokes, spinal cord injuries) and pelvic muscle weakness but also addresses overflow diarrhea in constipated patients and fecal incontinence from things like radiation proctitis. It's a problem which is thankfully rare in my practice, but devastating for the patient when it occurs; as well as something about which I've had very little training (other than overflow diarrhea).

Wednesday, April 18, 2007 by Drew Rosielle MD ·

Monday, April 16, 2007

Alvimopan; End stage heart failure; Other things

Medscape is reporting that alvimopan (an investigational drug for opioid-induced constipation) caused a small increase in heart attacks in one of its phase III trials ( 1.1% of patients with placebo vs. 2.6% with alvimopan had cardiovascular events). The FDA is apparently reviewing things. Alvimopan, along with methylnaltrexone, has been one of the much hoped for up & coming agents for opioid constipation (and potentially other side effects), so we'll see where this leads. That magnitude of increase in CV events is similar to many other drugs which have remained on the market (newer antipsychotics come to mind)--the FDA will have to decide if the added benefit of this new drug will be worth the risks....

(Medscape articles are available free if you sign-up.)

Heart has a review of the management of 'end-stage' heart failure patients. It's noteworthy for a couple of reasons. First, it's a well-written overview of the subject and addresses some of the newer trends: devices (ICD's, biventricular pacing), ventricular assist devices, etc. Second, it gives a nod towards palliative-oriented approaches to care and advance care planning in this population (for those of you who've read this blog for a long time you'll remember I use to track major review articles of highly mortal diseases such as mesothelioma and if they mentioned palliative/terminal care). It has a section, 'Palliative Approaches,' which gets just about as much column space as 'Experimental Approaches' which mentions advance care planning, supportive care, treatment limitations, hospice, etc. Included in this is a mention of continuous infusions of inotropes (i.e. dobutamine), a practice many in our field will balk at, although they definitely fit a palliative model (they don't make people live longer...if anything they shorten peoples' lives...but they can make people feel better). I'm curious if anyone has used these or seen them used in 'terminal' settings with palliative-only goals--I haven't yet.

An update on an earlier post:
Marachne alerted me to a provision in the Oregon Death with Dignity Act which explicitly addresses insurance:

127.875 s.3.13. Insurance or annuity policies. The sale, procurement, or issuance of any life, health, or accident insurance or annuity policy or the rate charged for any policy shall not be conditioned upon or affected by the making or rescinding of a request, by a person, for medication to end his or her life in a humane and dignified manner. Neither shall a qualified patient's act of ingesting medication to end his or her life in a humane and dignified manner have an effect upon a life, health, or accident insurance or annuity policy. [1995 c.3 s.3.13]

And to continue in the vein of Christian' s recent media postings, American Radioworks has a radio documentary available online on the hospice movement (you can stream it for free). It's a couple years old, but I just recently discovered it because, despite its age, it's the most recently posted documentary on their podcast list in iTunes (for those of you who use iTunes go to the Podcast directory>American Public Media under 'Featured Providers'>American Radioworks). Worth listening to, particularly if you're a public radio junkie.

Monday, April 16, 2007 by Drew Rosielle MD ·

Friday, April 13, 2007

End-Of-Life Care of Holocaust Survivors

Day to Day, a radio program on NPR, had a good segment (4:47) on the difficulties and opoprtunities in caring for Holocaust survivors as they age. The primary focus was not end-of-life situations but it has implications for hospice & palliative medicine. The piece is a good example of how understanding and knowing the individual can really help give the best medical care. I have only cared for two holocaust patients (that I am aware of), but I did not encounter any of the issues brought up in the piece. Often a pleasant or at least neutral situation with patients near the end-of-life is when they 'see' or 'hear' people or re-experience memories from the past. For a holocaust survivor this may be much more difficult. April 16th is Yom Hashoah, also known as Holocaust Remembrance Day.

One highly reccommended book for the HPM practioner is Dr. Victor Frankl's book Man Search For Meaning. He was a holocaust survivor who was able to find meaning in life despite being in concentration camps.

Friday, April 13, 2007 by Christian Sinclair ·

Wednesday, April 11, 2007

Medical Suicide and Medical Futility? Presidential Race 2008

The Washington Post and the USA Today ran articles in the past two days about very emotional and controversial issues in medicine. WaPo (or the Washington Post to those not in the know, as I was until today) covered the medical futility case in Texas where:

A 17-month-old deaf, blind and terminally ill child on life support is the latest focus in an emotional fight against a Texas law that allows hospitals to withdraw care when a patient's ongoing treatment is declared "medically futile."
The Texas Medical Futility law allows physicians with the support of the hospital to declare any treatment futile, and allow the patient/family unit 10 days to find another medical facility to care for them. If one is not found, the life-supporting treatment may be stopped. Or at least that is the way the law is written. I don't think they had anything written about what happens when the case gets into the media and appeals for injunction are made. I won't go into the details of the case on Pallimed because 1) I am not a journalist and 2) the WaPo does a pretty good job describing some of the salient points which I will highlight below.

1) Patient is a 17 month old boy
2) The child has Leigh's Disease , a rare metabolic disorder.
3) Prognosis: (severe form: less than a few years, partial form: into the teenage years)
3) The child is not brain dead (thereby meeting most state laws for allowing withdrawal of life-support)
4) The mother acknowledges the terminal course ("I just want to spend time with my son. . . . I want to let him die naturally without someone coming up and saying we're going to cut off on a certain day.")
5) No trach or PEG yet but planned if a facility accepts
6) The law was approved by then Gov George W Bush
7) Right to Life groups are supporting the mother and patient to continue treatment
8) The patient has insurance via Medicaid and the hospital says money is not the issue.

Things that I do not know from some research on this story and my concerns about these issues not being mentioned.

1) Involvement of a ethics consult. I am guessing yes, but without news stories demonstrating the process the hospital and medical staff is going through it makes the decision appear rash and without appreciation for the complexities of the situation. Any ethics consult I have been involved with is long and drawn out and generally involves people getting into heated arguments and disagreeing vocally. I would imagine this happened behind closed doors in the hospital, but it would pay to give the hospital credit for going through this process.

2) Involvement of a pediatric palliative care team. I am also guessing this has happened, but again it should be mentioned as part of the ongoing process.

So there is story number for story number two from the USA Today.

The USA Today had a large article about the ongoing debate and advancement of the California Physician Assisted Suicide Bill. From the tone of the article the bill is advancing and has a high potential to pass. The law is modeled after Oregon's law which has been in place for eight years.

The reason I feel this is such an important issue to follow for the Hospice & Palliative Medicine field is we will be asked questions about it. We should have answers thought out ahead of time, because this is such a complex topic. Can you easily explain the ethical and medical differences among euthanasia, physician-assisted suicide, withholding unwanted treatment, withdrawal of unwanted treatment, and aggressive palliative care? If not you should brush up on it because your community, your local media is going to be asking you questions. And not only asking you, but asking your co-workers. "Oh you work for Hospice X, what do you think about that bill in California/baby in Texas?"

One key point the article made is comparing the number of deaths if the rates are similar to Oregon's. If the rates were similar about 500 people a year would die under the California PAS law. Knowing how much California is a bellwether state this IS going to be a national issue.

So that brings me to my final point. Will medical suicide and medical futility be the hot button, most-talked about, divisive issues of the Presidential Race in 2008? It almost seems like a perfect storm.

1) No political candidate has any overused canned reply to medical suicide/medical futility.
2) It is similar to abortion in being divisive, but not as ubiquitous a topic in political circles, so it may appear more 'fresh' and therefore more interesting than the same ol' stuff.
3) Health care, health care health care. Everyone is talking about it a big issue. This gets down to the meat of it.
4) Increasing health care expenditures. How easy is it to say no more payment for treatment X on a policy level as opposed to a personal level? See Boomsday for a cutting and sarcastic look at government encouraging death as a way to cut health care costs.
5) Political candidates and their own health care issues. Elizabeth Edwards, Fred Thompson, John McCain. Couldn't you see that being used in the debates as a zinger question by an opponent?
6) Iraq is important but I feel that's not going to draw a lot of attention when the candidates are all going to say similar things. You won't be able to separate candidates on this issue.
7) The environment is important but again I don't see wide divides. Going green is the new warm fuzzy for politicians.

So sorry to do some political analysis on this medical blog. But you heard it hear first this is going to be THE issue of the 2008 Presidential Race. Tell your friends. Then it will be a self-fulfilling prophecy.

Now back to Pallimed's regularly scheduled programming. I apologize about the long post.

PS. I am introducing a new term here: Medical suicide, it may not catch on, but I always tired of saying/typing physician-assisted suicide and what about the pharmacists, nurses and other medical staff that might be involved in the process. And no one knows what PAS is. Will see how it flies, I am guessing not very far.

(My Standard Disclaimer: Pallimed, Dr. Sinclair and his current and former employers and states do not endorse or practice euthanasia or physician-assisted suicide, but do encourage the open, non-judgmental discussion of these topics for educational and ethical discourse about this controversial area of medicine.)

Photo from
Photo by Lee Jordan

Wednesday, April 11, 2007 by Christian Sinclair ·

Tuesday, April 10, 2007

Proxies; Single-fraction radiotherapy; Cancer symptom research; We are responsible for all the ills of the 20th century

Several things, relatively briefly:

The latest JCO has a couple of articles to note. First presents some research looking at if female cancer patients identify different individuals as their health care proxies and primary caregivers. It is from a survey of older women with cancer and finds that only about half of them name the same person to be their health care proxy decision maker, emergency contact, as well as their primary support person/caregiver. This finding was true even for women in partnered relationships. The second is a systematic review of radiotherapy for analgesia of painful bone metastases, specifically looking at single vs. multiple fraction radiotherapy. It confirms the consensus: they are about equally effective in providing analgesia, toxicity is about the same, but people receiving single-fraction are distinctly more likely to need re-treatment.

March's Journal of Supportive Oncology has a few articles to note (several don't have abstracts; table of contents here; pdf's are available free even for those without abstracts). First is a review on warfarin use (and the many, many ways it can go wrong) in cancer patients: a good all around primer/review on the subject. Next is a narrative summary of 20 years worth of cancer symptom research by the NCI & the North Central Cancer Treatment Group (Mayo). By narrative I mean a rapid fire review of the supportive cancer/symptom research of this group touching on everything from pain to mucositis to anorexia to hot flashes. It's the sort of article to keep handy as a quick evidence based reference list for cancer symptom research--i.e. it's got a killer bibliography. It also points to the frequency but importance of negative research--research that indicates the intervention in question isn't helpful. Without it we'd all be peddling pentoxifylline for anorexia. There's a supporting editorial by Charles von Gunten wondering why the NCCTG's cancer symptom research hasn't been replicated elsewhere--why there is such a dearth of organized, sustained symptom research elsewhere, like by ECOG or SWOG? His assessment: lack of money and lack of leadership, although NPCRC is a good sign.

Internal Medicine News recently had a few of articles about palliative medicine. First is one overviewing quality/performance measures in palliative care. It mostly focuses on the work of the National Quality Forum. Another discusses the American Osteopathic Association's approval of palliative medicine as a subspecialty under their board (this is not big news; it was expected to have happened and I guess it did in February). The final one is an editorial which seems to have a bone to pick with hospice/palliative medicine as a subspecialty. Sort of. I think you'll see what I mean if you read it. It seems to criticize HPM for being a 'place' based speciality (hospice) although, clearly, it isn't. Then it criticizes HPM for the following reasons:

"There is a special peculiarity to end-of-life care, in that it may be applied to a patient of any age, of either sex, of one of many cultures and beliefs, and with one of any number of physical conditions. The “dying process” is sometimes viewed as if it were a single definable and predictable process for all who are dying, as opposed to a unique individual experience shaped by the terminal disease and by the attitudes and circumstances of the patient's entire life.
In hospice, system requisites—not individual patient requisites—are applied to the dying at enrollment: the defined “time taken for dying” criteria for entry (occasionally resulting in the discharge of a patient who doesn't die fast enough); mandated concurrence with a Do Not Resuscitate order (despite the desire of some people to fight to the bitter end); and favored diagnostic categories (with cancer patients, for example, often getting preference over equally ill emphysema patients)."

As for the first point, we, as a profession, seem to be very aware of death being a unique individual experience etc. etc.; that is why, among other things, we are deliberately & self-consciously inter- & multi-disciplinary because individual patients and families have needs that are complex, unique, and usually beyond the skill set of any one profession, let alone individual. The second set of critiques, about hospice system requisites are either 1) inaccurate (the DNR bit), 2) descriptions of poor care, or 3) well-recognized limitations of the (at least U.S.) model of hospice care as defined by Medicare. Hospice isn't for everyone; most palliative care professionals would be the first to tell you that. I'm picking on the parts of the editorial which galled me; many other points were welcome, particularly about problems with further fracturing patients' care with another subspeciality thrown in the mix. However, by the time it came to its last sentence I frankly had no clue what the editorialist was talking about:

"As we know from the lamentable history of the 20th century, when the system becomes the patient, terrible things can happen. This frightens me and should frighten us all."


(IMN's website currently appears to be allowing free access to articles for everyone; it's usually free for those who sign-up. I've found it a little testy today however but hopefully it won't give readers major trouble--the March 15th issue is what you want.)

Tuesday, April 10, 2007 by Drew Rosielle MD ·

Monday, April 9, 2007

End of Life Care in the Blogosphere

Highlights from recent posts on other blogs:

1) In the health care world of blogs, you have bloggers that use pseudonyms and those that use their real names. Basically what it boils down to is credibility you have when you attach your name to something versus the freedom that anonymity gives you to say just about anything. We aim for credibility here but so does Paul Levy. If you do not know who Paul Levy is then you probably don't read a lot of health care blogs or you are not in the Boston health care scene.

Paul is the President and CEO of Beth Israel Deaconess Medical Center in Boston, and he has a blog where he posts his opinions about health care. He recently touched on the Dartmouth Atlas Project which compares resource utilization and cost in various hospitals around the country. This study has been highlighted by many to focus on the over utilization of "limited" resources near the end of life. His post is insightful and candid and a call for how do we fix the mismatch of technology and goals of care in health care. Feel free to check it out and post your comments and opinions. Not every day you get to tell a CEO of a hospital what you think.

2) The Wall Street Journal has started a health blog that has been pretty good, although it focuses a bit too much on pharma for my tastes. They recently highlighted a Boston Globe article noting that not all bed sores are preventable. I think this is something most health care people know, but as we see more decubiti we are learning more about how complex they really are. There is no new definitive study that prompted this article, but it is a balanced news article on a commonly misperceived subject (all bed sores are caused by neglect).

3) A post on Overcoming Bias (a statistics and bias blog) presents predictions as consumable goods. Basically that the prediction is made (verbalized) and consumed (listened too, thought about) and then it is not worth anything, until the next prediction is made. The post is about Friedman Units (6 months) and the war in Iraq, but I found this post interesting in that it reflects a situation that is common in near-death prognostication. When a patient is imminently dying and the family is looking to you for a prognosis, there are many times when a physician may say, "a few more days." But what happens when you say "a few more days" for a few more days?

4) And finally, Hospice Blog has a new address, If you have not checked out Hospice Guy and his Hospice Blog, you should. He has some great posts, like his current one on the dilemma about having hospice in an assisted living facility.

If you think any of these blogs are interesting try subscribing to them or check out the highlights (or at least what I think are the highlights) by scrolling down the left column of Pallimed to 'Christian's Shared Items'. I 'share' the posts and pubmed searches that I think are helpful to the palliative medicine community long before I ever get a moment to blog about them.

Photo from
Photo by Rob Lee

Monday, April 9, 2007 by Christian Sinclair ·

Friday, April 6, 2007

Having Problems with Signing Up for Email?

I was checking the email subscription status and noticed that there are 25 people who are in the process of registering, which means that you probably have tried to register but things have not worked right for you. If you are having any problems please try these few steps:

1. Tell your email program to allow emails from "" Often times your spam blockers may prevent this from coming to you because it sees it as a bulk email which is how spam is usually sent out. We are not spammers, nor do we sell or give away your address to anyone.

2. Re-register with a different email account. Many people I know have had some trouble getting their work email program to accept the subscription, but have had success with their personal hotmail, aol or gmail accounts.

If neither of these steps helps you, please email me at ctsinclair [at] gmail (dot) com

Friday, April 6, 2007 by Christian Sinclair ·

Wednesday, April 4, 2007

Withdrawing life-sustaining treatments in incapacitated patients; (A friend's) Cancer is good for you?

The current Neurology has the American Academy of Neurology's updated position statement on life sustaining treatment for patients without decision making capacity (no abstract; issue table of contents here). It is explicitly written in response to legislative efforts of the last few years (post-Schiavo) to restrict the rights of patients' families and physicians to stop artificial nutrition in incapacitated patients if it is decided that that is what the patient would want. To this end it reiterates the AAN's 1988 position that it is permissible to stop life-sustaining treatment (including artificial nutrition/hydration or ANH) in incapacitated patients if that is consistent with their wishes/in their best interest. Some nuggets:

"[Recently] legislators in several states introduced bills that would create the presumption that any person who has been declared legally incompetent to make decisions affecting medical treatment or care would, in the absence of a carefully written advance directive that met specific statutory requirements, choose to receive ANH to sustain life. To withdraw ANH in these situations, the patient’s surrogate would have to prove by a clear and convincing standard that the patient would have chosen to have ANH withdrawn in the current circumstances. Furthermore, this proposed legislation would establish that elected officials, who in existing law have no legal standing as an "interested party" in such cases, would have the same right to challenge the administration or withdrawal of ANH as any true "interested party" (i.e., spouses, relatives) would. As of mid-February 2006, 20 bills, based upon model legislation from the National Right to Life Committee (NRLC), had been introduced in 13 states. Another 14 bills were modified to add additional restrictions."

These laws could, then, strip patients' families (and even legally designated health care powers of attorney) of the right to carefully deliberate over what their loved ones would want--what would be in their best interest--and give that power to the state/elected officials, at least when it comes to decisions about tube feeds. In a country in which people holding national office are willing to diagnose states of prolonged unconsciousness from watching 4 minutes of video and pass laws based on such tele-diagnoses, this is clearly not a good thing. I'm actually not sure of the status of these proposals: there hasn't been one in Wisconsin where I practice--leave comments if you know if any of these laws had been passed. I was under the impression that many of the proposals had failed to go anywhere in state legislatures because, among other things, a large majority of Americans think this is wrong--none of the state's business.

The statement is clear that the AAN doesn't endorse the withdrawing of ANH in permanently incapacitated patients of course, just when their loved ones believe it is a treatment the patient him/herself would reject, were they able to weigh in on it, upholding the long-held principle of patient autonomy over what is done to & stuck into her/his own body.

"The AAN opposes all state and federal legislation that would presume to prescribe a patient’s preferences for artificial hydration and nutrition. The AAN further opposes all state and federal legislation that limits the ability of patients to declare their preferences for health care through the use of living wills and advance directives or by discussion of their wishes with their families or surrogate decision makers. The AAN opposes all state and federal legislation that gives legal standing to elected officials (or their designees) to intercede in private decisions regarding the use of ANH. The AAN opposes all state and federal legislation that expands judicial intervention in a patient’s decisions regarding the use of ANH. The AAN supports state and federal legislation that promotes a better understanding of patient preferences for medical care (including the development of advance directives, living wills, and durable power of attorney declarations; the creation of health care directive registries; and the indication of such information on official identification cards) in accordance with existing AAN policies."

There's also a supporting editorial (TOC here) which talks about the role of the neurologist in discussing prognosis & treatment options/limitations etc. with the families of these patients. It's clearly written by a neurologist whose seen his share of poorly run family conferences. The image above is from the editorial--I have been so taken by its whimsical but straight-forward depiction of everything (well not even everything) that can go wrong in family conferences that I've decided to post it here, copyright concerns aside.

And for a complete change of tone: The Onion is now posting video 'news' clips. Today's is about how having a friend with cancer is good for your health. It's hilarious, and rather obnoxious, and if you want it could be interpreted as a commentary on cancer patients being culturally and socially erased by their disease: their face of suffering, disease, and death--hard to look at--being pushed aside by the face of health, vitality, and 'hope.' (Thanks to alert reader Dr. Steve Rommelfanger for alerting me to this.)

A Friend's Cancer: Good For Your Health?

Wednesday, April 4, 2007 by Drew Rosielle MD ·

Monday, April 2, 2007

fMRI & the PVS; Opioids & respiratory depression

1) Neurology has an interesting article about using functional MRI to, perhaps, differentiate between a minimally conscious state (MCS) & a persistent vegetative state (PVS). It looks at 12 severely brain injured people (mostly traumatic; 7 clinically assessed as being in vegetative states and 5 MCS; most in the 2-6 month range post-injury). Patients had fMRI scanning while their own name was being spoken to them (the assumption is that this is a powerfully meaningful stimulus). Most of the PVS patients demonstrated activity (if any at all) isolated to the auditory cortex (as you'd expect). Two of them, however, had activity in 'higher order associative temporal' lobe regions--all the MCS patients did as well (the article is quite neurologically technical but basically this is taken as evidence of some higher cortical functioning). Very interesting is that these two patients, within a few months, had clinically improved had been reassessed as being in MCS (both were 4 months out from their injury at the time of scanning). The authors' gloss on this is that these two patients were probably were in an MCS but just outwardly appeared (at least temporarily) to be vegetative.

At this point it's too early to know what to make of all of this, but it seems likely that functional imaging is going to be incorporated in the diagnosis of these, and similar conditions. It's long been recognized that a few people in prolonged vegetative states eventually make some recovery (&, depending on who you ask, one should wait 6 months to a year before concluding that a persistent VS is a permanent PVS, particularly in the setting of traumatic head injuries). Hopefully techniques such as the above will be helpful in better prognosticating this. None of this changes the fact however that most people wouldn't want to be kept alive artificially in a MCS either and going from a PVS to an MCS is no real improvement in the big scheme of things. Indeed, the authors of this article noted that none of the MCS patients improved during the months of monitoring after scanning. The chances of recovering from an MCS to a decent level of function are much higher than a VS but still dismal; for me the priority is figuring that out.

(Thanks to Tom Quinn for letting us know about this article.)
(Image cribbed from fMRI's Wikipedia page).

We usually don't post much about articles published in the major palliative care journals but I thought I'd comment on the recent trial looking at respiratory depression and opioid dose titration in Palliative Medicine. It's an interesting trial from the Cleveland Clinic and--while not a hot topic for the average palliative provider--concern for respiratory depression is a major fear amongst clinicians less familiar/comfortable with opioids. The study asks What happens to respiratory function during IV opioid titration for cancer inpatients with severe pain? Basically, it follows the 'natural history' of respiratory function as these patients were getting their pain treated by the palliative service. It looks at 30 patients (median age 60, most with ECOGs of 3-4, none on oxygen or delirious) admitted with severe pain who were put on parenteral opioid infusions. They excluded patients on oxygen because they wanted a "purer" look at oxygen saturation and end-tidal CO2. Most patients were chronically on opioids (median daily oral morphine dose of 73mg). Basically the patients were admitted, baseline data were taken, they received parenteral opioid dosing per the palliative service's routine practice, and follow-up data were gathered. They measured pain, respiratory rate, oxygen saturation, and end-tidal CO2 (basically exhaled C02 tension). These patients seemed to have received good pain control (mean pain decreased from 6.8/10 to 1.9/10), and the mean morphine dose equivalent more than doubled during the study (to 169mg).

The results were as expected. Mean ET-CO2 didn't change (went from 33.3 to 34.7 mmHg) across the study (they compared baseline to when pain was controlled); no patients manifested clinically significant respiratory depression; and oxygen saturation remained >92% throughout the study in all patients. That said, there were a couple transient episodes in 2 patients of low respiratory rate (<10/minute). style="font-style: italic;">background evidence but probably wouldn't change too many minds.

Monday, April 2, 2007 by Drew Rosielle MD ·