Friday, December 29, 2006
A little New Year's clean out of my back-log of 'to-blog' articles, plus some news articles...
Chest recently had an article about patients' & families' understanding of CPR. The study involved interviewing ~400 hospitalized patients (and some of their families) with advanced cancer or medical illness (CHF, COPD, cirrhosis). It was a multicenter study in several Canadian teaching hospitals; just under half of the patients had a pre-existing DNR order, and in follow-up over half the patients were dead at 6 months. Some of the results were pretty shocking, most notably that almost half (44%) of the subjects couldn't identify a single element of CPR (artificial breathing/intubation, chest compressions, shocks, drugs). Less surprising is that <5% of patients could accurately state their own prognosis for survival of CPR (most stated they didn't know or were wrong). A good third of the subjects said they didn't want to talk with their doctors about resuscitation (although this is difficult to interpret since most didn't really know what it meant anyway). Most patients endorsed some sort of shared decision making (with doc & family) about performing CPR or not, although a fifth said they thought the decision was theirs alone. Patients generally ranked prognostic outcomes as the most important information they need to know about CPR. There are lots more findings and it's a recommended read. I've long thought the problem with CPR discussions with patients etc. have been due to misconceptions about it, but this research suggests it's more that patients have no conceptions about it. I'm trying to decide whether this will change the way I speak with my patients about it and I'm not sure if it will. However, I'll likely incorporate it into how I teach housestaff/medical students how to have these discussion: assume the patient knows nothing, what they do know is wrong, and what they want to know is the expected outcome (not the gory details of the intervention).
Geriatrics this summer had a review article on feeding tubes in advanced dementia, reviewing the evidence, ethics, and communication challenges surrounding them. It doesn't add much to the debate, but it is a good, comprehensive review of the issues involved and it's a good addition to one's teaching file (it's actually quite plainly written and would be easily understandable to non-medical colleagues--chaplains, social workers, etc.).
Seminars in Oncology recently had two reviews of note: one on the management of spinal cord compression, the other on neoplastic meningitis.
It's been a busy week in the NY Times. First is an op-ed about the "most-avoided conversation in medicine " (that would be the one about how the patient is dying). It's written by a surgeon, strongly advocates not avoiding the conversation, and liberally references the SUPPORT trial. Thanks to Dr. Lynn Bunch for alerting me to this. I'll also recommend the recent article about Dr. Michael DeBakey's aortic dissection repair at the age of 97--it's a fascinating story involving pseudonyms and late night emergency ethics meetings and discusses among other things the ethics of extraordinary care for the oldest old (and VIP's).
Friday, December 29, 2006 by Drew Rosielle MD ·
Wednesday, December 20, 2006
This is from my brother, a lawyer, on the Abigail decision. Probably a little more reasoned than my tantrum last week about this.
"[T]hat ruling was really, well, weird.
i googled it and came upon this summary which was pretty good:
so whats going on is that DC circuit is "finding" (quite literally discovering) a "new" right that is protected by the 14th A Due Process Clause (DPC).
Realize that these "discoveries" are very important - see e.g. protecting the rights of homosexuals to engage in sodomy (Lawrence v. Texas), right to privacy (and thus, right to abortion) (Roe).
So, as the blog points out, the DC Cir applied the "Glucksberg Test" to determine whether the right asserted is protected by the DPC. They obviously did, and, as Groopman points out, the really "weird" part is the use of Cruzan as precedent.
It doesn't seem to follow that a right to be free of battery, which is required for liberty/democracy/etc, also requires "the right to access potentially life-sustaining medication where there are no alternative government-approved treatment options."
(At this point he reads the ruling)...
"[H]ere is the holding:
"Terminally ill, mentally competent adult patients had a due process right to informed access to potentially life-saving investigational new drugs determined by the Food and Drug Administration (FDA) to be sufficiently safe for expanded human trials, where there were no alternative government-approved treatment options."
i think this means:
a) you are going to die
b) you are sane
c) thus you get access to drugs past phase I trial (which means drugs are in, or suitable for, phase II human trials - thus humans are getting the drugs anyway)
d) if there are no FDA approved drugs on the market
this seems distinct from what you say on your blog entry (sort of a anyone gets anything approach) but i just read your entry once so perhaps not.
i've skimmed the opinion and all i can say is that it is a pretty damn compelling read. i think Groopman suggested that it's ripe for reversal but i'm not entirely sure. Certainly an expansive view of the right to unregulated drugs is unlikely to be adopted, but, in my ignorance, i think points A) - D) above seem reasonable and potentially a constitutionally protected right."
Stated that way, it does seem more reasonable than my initial reaction, and I hope he's right. Thanks Julian Rosielle, Esq. And so, for real this time, Happy Holidays.
Wednesday, December 20, 2006 by Drew Rosielle MD ·
A few interesting articles from December's Journal of Pain and Symptom Management.
I'm going to be travelling for the next few days and likely won't post again until next week. For those of you who celebrate a winter holiday...Happy Holidays.
First is a randomized trial of oxygen for dyspnea in advanced cancer patients. It looked at 50 advanced cancer patients in an Australian cancer center (both in- and outpatients); all had dysnpea due to their cancer (although this was determined quite subjectively). Median age 65; most had ECOG performance statuses of 3. 17 were hypoxic. They received either oxygen or room air delivered at 4L/minute by nasal canula in a randomized, double-blinded fashion. They received this for 15 minutes, had a 30 minute wash-out, then crossed over to the other treatment. Basically both groups' dyspnea improved equally. The hypoxic patients (14 of whom became normoxic with oxygen) also improved equally with air or oxygen. The authors conclude that supplemental oxygen does not per se improve dyspnea in these patients. While I'm sympathetic to these findings, and appreciate all reminders of the complicated, pleomorphic nature of dyspnea, this conclusion needs to be taken with a grain of salt. This is not a mandate to rip off nasal prongs, as patients receiving air through them improved (just no less than with oxygen). In addition, while the study was powered adequately to determine a difference between oxygen and air for the entire 50, it was not powered adequately to determine a difference in just the hypoxic patients, so we can't conclude oxygen and air are equivalent in these patients, and giving patients a trial of normoxia seems very justified! This study however highlights how much more is going on with dyspnea than simply a lack of supplemental oxygen....
Next is a preliminary study of l-carnitine for cancer fatigue . This was a preliminary study that I'm not going to spend much time on other than to note it: cancer-related fatigue is widespread, poorly understood, and poorly-treated (insofar as we don't know how to treat it). This study looked at 27 advanced cancer patients with low serum l-carnitine levels and moderate to severe fatigue. L-carnitine supplementation wasn't toxic, some patients seemed to improve on it. One assumes we'll be seeing larger, placebo-controlled trials.
Finally is a another study on opioid use and mortality in hospice patients. It is a retrospective study looking at ~700 hospice patients, opioid use and dose changes, and death. Essentially, the authors looked at the amount of opioid use and the amount and timing of opioid dose changes, divided the subjects into different groups based on these factors, and tried to find any differences among them regarding time to death. Overall, they didn't. In their multivariate analysis, final opioid dose was associated with time to death (higher opioid dose = shorter time to death), but timing of final dose change and the percent amount of the final dose change were not. In addition the magnitude of the final opioid dose explained only 6% of the variance in survival (meaning that it didn't strongly predict shortened death). In their sample, the median time to death from the last opioid dose change was ~12 days, again suggesting that--in this population as a whole--opioid dose changes didn't lead to death (12 days is long enough that the effect of the last opioid dose change likely had little to do with the timing of death).
It should be noted that there was a lot of missing data in this study (the data wasn't initially collected for the study), limiting its conclusions. That being said, this adds to the slowly accumulating empiric evidence that opioid use near death just isn't a big factor in hastening death (all the studies have been poor quality, but all have had similar conclusions, meaning that if opioids are hastening death it is not on a magnitude large enough to be picked up by these studies). Because of this I officially call for a moratorium on the use of "morphine in the dying patient" as an example of the principle of double effect in the medical education literature. While I'm fine with the PoDE, using this as an example subtly promotes the idea that we are killing people (hastening death) by providing comfort for them. On the other hand, it must always be held clear that these are population based studies, and individually, there probably are some patients whose deaths are hastened directly due to the use of opioids, but these are rare enough not to be picked up. When I have family members ask me about this I usually reassure them that if opioids do hasten death it's likely on the order of hours or a day or two, but no longer.
by Drew Rosielle MD ·
Tuesday, December 19, 2006
Just an update on Piergiorgio Welby, the 60 year old man in Italy with muscular dystrophy who is requesting to be sedated and have his ventilator to be removed. The NY Times has probably the most in-depth and human article I have read on the issue so far.
A couple of key points that complicate the matter:
Most media outlets are confusing the terms euthanasia, suicide, and withdrawal of unwanted medical support.
Some clarification of the terms for serious ethical discussions about this topic:
- Euthanasia: the act of ending of life via intentional administration by a health care professional of medications at doses considered supertherapeutic with the goal of ending life. The cause of death becomes the medication and not the disease process. Euthanasia can be termed voluntary or involuntary.
- Suicide (Physician-assisted): the act of ending of life via intentional self-administration of medications at doses considered supertherapeutic with the goal of ending life.
- Withdrawal/Withholding of Medical Treatment: the act of withdrawing/withholding any medical therapy (ventilator, hemodialysis, chemotherapy, medications, artificial nutrition, artificial hydration), when the therapy A) no longer meets the goals of the patient (or surrogate decision maker when the patient lacks capacity), or B) the burdens/risks greatly outweigh the benefits.
- Aggressive Symptom Management/Palliative Care: the process of assessing, treating and reassessing symptoms and adjusting medical treatment in a measured and gradual manner with the goal of controlling symptoms, with the cause of death being from the progression of disease.
- In the United States, euthanasia is illegal and not supported by any major medical societies.
- In the United States, (physician-assisted) suicide is illegal except in the state of Oregon, where it was approved by voters in 1994 and again in 1997. It has been allowable by law since 1997, and has been heard by the Supreme Court of the US.
- In the United States, withdrawal or withholding of medical treatment is considered legal in all 50 states, and ethical by most major medical societies.
The matter is also complicated in that the patient has long been an advocate of euthanasia (which is legal in the Netherlands, Belgium and Switzerland) in Italy. Also the Catholic Church is involved with many hospitals and physician groups as well as Italian politics so that brings in the theological aspects of this discussion as well as the medical, ethical, legal and cultural norms.
Here are a few other links on the matter which may be of interest:
Italian article (in English) from Dec 13 highlighting the political situation
Video reading of letter (below) in English (first video post on Pallimed...woo-hoo!)
Piergiorgio Welby's letter to the Italian President (quite long, but he is a skilled writer, except again he fails to clarify the difference between euthanasia as I described above, and withdrawing unwanted medical treatment)
Open letter to the President of the Republic, Giorgio Napolitano
From Piergiorgio Welby, Co-President of the Luca Coscioni Association
September 21, 2006
I am writing to you, and through you I am addressing also those citizens that will have the opportunity to listen to these words, to this cry of mine, which is not one of desperation, but one full of human and civil hope for our country.
Until two and a half months ago, my life may have been marked by rather serious difficulties, but I was able, at any time of the day, to use my computer and write, read, do research and chat with my friends on the Internet. Today, I seem to have fallen into an abyss from which there is no exit.
The day starts with the alarm of the lung ventilator device, while humidifying filter and the mouth catheter is changed, the day continues with the radio in the background, between frequent aspirations of tracheal secretions, the monitoring of oximetric parameters, personal cleaning, medication, and Pulmocare beverages. I used to get up at ten at the latest, and start writing on my PC. Today, my pathology, muscular dystrophy, is in such advanced state, that I cannot make any movements, and my physical balance has become extremely precarious. I get up at noon with the help of my wife and an assistant, but more and more frequently I find myself sitting without opening my computer, because I feel dead tired. I force myself on the chair to assume, for at least an hour, a position other than lying in bed. When I go back to bed, at times I fall asleep, but wake up in a fright, perspiring and more tired than before. I turn on the radio, but listen to it without paying attention. I cannot concentrate because I am constantly thinking on how to put an end to this life. Around six, I make another effort to sit, with the help of my wife Mina and my nephew Simone. Every day I get worse, weaker and more tired. After about an hour they take me back to bed. I watch TV waiting for the Tavor tablet so that I can fall asleep and not feel anything, hoping that I will not wake in the morning.
I love life, Mr President. Life is the woman who loves you, the wind through your hair, the sun on your face, an evening stroll with a friend. Life is also a woman who leaves you, a rainy day, a friend who deceives you. I am neither melancholic nor manic depressive. I find the idea of dying horrible, but what is left to me is no longer a life… it is only a stubborn and senseless obstinacy of keeping active the biological functions. My body is no longer mine… it is there, spread before doctors, assistants, and relatives. Montanelli would understand me. If I were Swiss, Belgian or Dutch, I could escape from this utter outrage, but I am Italian and there is no pity in Italy.
You are probably thinking, Mr President, that I am appealing for a “dignified death” for myself. But no. That is not it. And I am not talking only about my death.
Death cannot be “dignified;” it is life that should be dignified or decent, especially when it is growing weak because of old age or incurable illness. Death is something else. To define death by “dignified” euthanasia is to deny the tragic dimension of dying. It is tantamount to continuing to conceal and to distort death that, driven from home, hidden by a screen in hospitals, neglected in the loneliness of the homes for the aged, seems to be something that it is not. For what is death? Death is an indispensable condition for life. Aeschylus has written. “It’s hard to struggle. Decay is setting in, like a swelling flood. A blind ocean, a cesspool of pain surrounds me without even a glimmer of hope. There is no landing place. There is no landfall.”
And yet there is a landfall, but euthanasia is not a “dignified death” but an appropriate death, in the words of a man of faith, Jacques Pohier. Appropriate is that which “carries to the port;” for Plutarch, the death of young people is a shipwreck, that of old people a landing at a port, and Leopardi defines it as the only “place” where rest, not bound but secure, is possible.
In Italy, euthanasia is a crime, but this does not mean it does not “exist:” there are calls for euthanasia which are not heeded to because the doctors are afraid of being criminally prosecuted, and conversely, acts of euthanasia may be practiced without the informed consent of patients who are conscious. To grant a request for euthanasia, certain European countries, such as the Netherlands and Belgium, have introduced procedures that enable a “terminally ill” patient to plan with the doctor, the course for “landing” at an appropriate death.
A law on euthanasia is not the incomprehensible request of a few eccentrics either. Even in Italy, there were four or five bills already introduced in the last legislature. The association of anaesthetists, with great circumspection, has asked for a clearer law; the recent decision of the lapsed (and not yet renewed) national bioethics committee on the advance directives for healthcare revealed that it was impossible to exclude any eventuality of euthanasia in the event that the doctor adheres to the advance provisions drawn up by the patients. Even in the Church’s strict position there are certain openings, albeit within the confines of tradition, that allow for a heavy intervention with palliative cures and do not allow for intervention with disproportionate treatments that do not entail concrete benefits for the patient. Public opinion is always more aware of the inherent risks of leaving every decision about treatment up to the doctor. Many have helped a family member, a friend or a relative during an incurable or highly debilitating illness and have come to the decision, that if they were faced with the same predicament, they would not follow the same path. Others have witnessed the tragedy of a person in a persistent vegetative state.
When we face issues connected to the end of life, we are not dealing with a dispute as to who is in favour of life and who of death: all patients want to be cured, not to die. Those who share, with love, the course imposed by the illness on the loved one, want that person to recover. Between wishes and hopes, time passes relentlessly, and with the passage of times, hopes grow weaker and the desire to be cured becomes a desire to shorten the course of desperation before reaching that natural end that the reanimation technicians and machines that support or stimulate the vital function risk posting ever forward in time. As to our technical possibilities of keeping people alive, there will come a day when swarms of living dead will come out of reanimation centres, who will wind up vegetating for years. We will probably all have to learn that death is also a learning process, and merely a matter of falling into a state of unconsciousness.
His Holiness, Pope Benedict XVI, has said that “to the claim often put forward that it is necessary to resort to euthanasia in order to eliminate suffering, we must corroborate the inviolable dignity of human life, from conception to its natural end.” But what is “natural” in a reanimation room? What is natural in a hole in the belly and a pump that fills it with fats and proteins? What is natural about a hole in the windpipe and a pump that blows air into the lungs? What is natural about a body kept biologically functional with the help of artificial respirators, artificial feed, artificial hydration, artificial intestinal emptying, of death artificially postponed? I believe that it is possible to play with words for reasons of power or faith, but I do not believe that it is possible to “play” with the life and pain of someone else for the same reasons.
When a terminally ill patient decides to forego emotions, memories, friendships, and life, and asks to put an end to a survival that is cruelly “biological,” … I believe that his will should be respected and heeded with the compassion represented by the force and consistency of secular thinking.
I am aware, Mr President, that I have spoken to you, through my sick body, also of politics, and of objectives necessarily to be debated freely in Parliament, that do not call for your intervention or decision as to their merits. What I do take the liberty of recommending to you, however, is the defence of the right of each and every citizen to be apprised of the proposals, reasons, stories, wills and lives which, like mine are faced with this conundrum.
Luca Coscioni’s dream was to free research and to give a voice – in every sense of the term – to those who are ill. His dream was interrupted and it became known only after it was interrupted. So it is now up to us to dream for him too.
My dream, also in my capacity as co-president of the association that bears Luca’s name, my will, my request, that I wish to bring before all authorities, starting with the political and judicial bodies, is today clearer and more precise in my mind than ever before: to be able to obtain euthanasia. So that Italian citizens can have the same opportunity that is granted to Swiss, Belgian and Dutch citizens.
Did you really read all the way to the end? I am so impressed! Leave some comments please, this is a contentious issue, surely this is something you want to say something about. Or leave some comments about the letter and some of the very interesting phrases he uses.
Tuesday, December 19, 2006 by Christian Sinclair ·
Monday, December 18, 2006
I have a keen interest in the way medicine is portrayed in the media (TV, print, etc.). I think most good docs should have a good understanding of how most of their patients may collect information about disease, treatments, and outcomes. There has been a big push for health care to be more openly measured on performance and cost, but even with a lot of metrics out there, I think most of our patients and their families will go on information passed on by friends, and by a report of a great breakthrough in "(insert name of disease here)" on the evening news or in the paper.
So I was relatively pleased to see a large second page article in my Sunday paper about prognostication in cancer. The push for more information to get to the consumer with the benefit of multiple new therapeutic options (of varying toxicity and benefit) has made most people realize that making these decisions can be very difficult.
When a patient in the article was offered a host of choices by her doctor she replied:
"I'm having a little trouble following you," Rastelli, a single mom, said doubtfully.
"I know. This is a lot to take in," said her doctor, Kathy Albain.
They then turned to something called Adjuvant Online. It is a pretty slick JAVA Web based prognostic modeler for Breast Cancer, Lung Cancer, and Colorectal Cancer. It basically will tell you based on a number of disease specific factors, and patient related characteristics, what the difference in mortality is from cancer, therapy, or other disease at five years. It is intended to be used by health care professionals in counseling patients. Of note it is sponsored by a Breast Cancer foundation and AstraZeneca (maker of ARIMIDEX® (anastrozole)).
It is a well put together program with lots of extra information and slides/pictures for shared decision making with your patients. If you are an oncologist you should surely take a look at this site. For palliative med providers, we could consider making programs like this for approximating many other interventions and their values closer to the end of life. For more on evidence based formulation of prognosis you should come to the Annual Assembly at the AAHPM in Feb 2007 and see my 4 hour pre-conference on the topic. (Shameless plug!)
The article also mentioned a Mayo Clinic program called Numeracy, which does a similar thing, but even with my Google skills, I could not find it.
Dateline Rome, Italy
The other article that caught my interest was one that described a case in Italy where a judge rejected a request for withdrawal of a ventilator from a 60 year old man, Piergiorgio Welby, diagnosed with muscular dystrophy as a teenager. He receives artificial nutrition and communicates with a voice synthesizer which reads his eye movements. Apparently he has a constitutional right to refuse treatment and even stop treatment once started, but the Italian medical code (not a law) requires maintenance of life (apparently without a clause about patient choice or at what cost.) Italian physicians stated they could not carry out 'treatments aimed at causing death.' They also mislabeled this as a potential suicide or euthanasia if carried through. First of all it cannot be suicide because the main actor in a suicide is the patient himself. And euthanasia involves the introduction of a new means other than disease progression as the cause. This is more accurately described as withdrawal of medical therapy which then should be argued on its own merits, as opposed to using such polarizing and misunderstood terms as suicide and euthanasia. There was a slight nod in the article to the influence of the Roman Catholic Church with the courts in Italy.
For more article you can use Google News.
A last quote for reflection.
He has even written to Italy's president asking to be taken off the machine that keeps him alive so he can, in his words, "find peace for my tortured and shattered body"
Monday, December 18, 2006 by Christian Sinclair ·
Saturday, December 16, 2006
I've realized that since I upgraded the blog that there's problems with the site feed. The former feed doesn't seem to be updating & Feedblitz appears to have stopped updating as well. I can't say that I've figured it all out yet.
It appears that the new feed may be: http://pallimed.blogspot.com/feeds/posts/default
That is now what's in Feedblitz. If you subscribe to Pallimed's feed another way you may need to update it. Sorry for any inconvenience...although I suspect the problems aren't over yet.
Saturday, December 16, 2006 by Drew Rosielle MD ·
Friday, December 15, 2006
Well it's media week (or month, frankly, looking back over recent posts) here at Pallimed...
The current New Yorker has a feature article by Jerome Groopman about the movement here in the US to expand dying patients' access to experiment drugs. This includes proposed rules by the FDA to--essentially--expand, simplify, and make more economically viable 'compassionate use' of drugs that are in phase III trials (or are looking good late into phase II trials). That, such as it is, seems pretty reasonable and a good thing.
On the other hand, the article also describes a movement, centered around the group "Abigail Alliance ," which is promoting a position that dying patients have a right to receive experimental drugs in sort of a de-regulated 'compassionate use for everyone no matter what the drug is' fashion. There is related legislation floating around which tries to enact this--and my understanding of this legislation is that it would include drugs which have passed only phase I testing (someone in the article points out you could easily get shark cartilage past phase I). In addition, a D.C. District Court of Appeals recently upheld a decision that access to experimental drugs is a "constitutional right." This, to me, is the real story here. The consensus of the legal experts quoted in the article is that this decision is bunk. It's sort of discussed as a reverse-Cruzan decision (Cruzan: patients can refuse medical treatments even if life-prolonging vs. This one: patients have a right to medical treatments even if bunk[=not life prolonging=no even preliminary human evidence that likely to be beneficial]). Cruzan & similar decisions however have their basis in well established common law (informed consent rulings, right of the individual to determine what is done to their body, unwanted touching is battery, Schloendoff case, etc.), whereas this ruling is based in, well, nothing per the legal experts in the article. (It's being appealed.)
Contemplating what this ruling could lead to if upheld is fun in a sick way. If dying patients have a constitutional right to new drugs which have no evidence to support their use in such patients, then why don't they have a right to any treatment? Why not the right to die with a tube down their throat, hemorrhaging, hooked up to CVVH, with a 24 year old anesthesia prelim cracking their ribs, getting bilateral femoral central lines placed simultaneously, receiving purified sea-cucumber extract which didn't kill anyone, after all, in phase I testing. Because, after all, if the result is death anyway, shouldn't people have the right to demand any treatment they want (and, given that it's a constitutional right-n-all, I guess us doctors, nurses, anesthesia prelims, pharmacists, etc. will have to provide it). This seems so far from established professional and legal norms that one assumes it will not come to pass.
One more thing before I change track here. A quote:
"The judges in Abigail Alliance reasoned that the same right of self-determination that allows someone to refuse treatment allows him to "choose to use potentially life-saving investigational new drugs." They pointed out that for "over half of our Nation's history"—until the passage, in 1906, of the Pure Food and Drug Act, which made it a crime to sell mislabelled or adulterated medicines—"a person could obtain access to any new drug without any government interference whatsoever.""
I practially choked on my dinner reading this. If the court really thinks we need less 'government interference' in taxpayers' access to drugs then 1) I'll start synthesizing LSD in my basement tonight (call me in about a week), and 2) if you suffer from aches, pains, rheumatism, dropsy, chilblains, hysteria, canker sores, onanism, sugar diabetes, female complaints, or geriatric profanity disorder, I highly recommend the patented Captain Drew's Real Doctor Hoary Plantain Solution--it's all-natural, cheaper than a trip to the doctor's, & comes with a 100%-satisfaction-guarantee.
Enough of that.
Groopman, who you can tell is not a fan of the court ruling, does however frame the article in his own experience in treating AIDS patients around the time protease inhibitors were being developed--including losing patients who likely would have lived much longer if they had access to on-trial antiretrovirals--and very skillfully and compassionately talks in the article about the balance between safety and access to potentially life-prolonging therapies.
Thanks to Dr. Marcin Chwistek for alerting me to this.
(Related NPR story here.)
(And in a story with some consonance with the above discussion, the woman in a PVS in the UK effectively treated her state of being awake instead of curing her of her state of being in a whose family's petition for withdrawal of life-prolonging medical treatments was denied by a judge because they hadn't given her zolpidem [yes, Ambien, I kid you not--there are a handful of case reports suggesting people temporarily responded to it] tried zolpidem. It made her sleep. And because zolpidem effectively treated her state of being awake, as opposed to effectively treating her state of being in a PVS, the judge has ruled that the family's petition for ceasing life-prolonging treatment can be honored. The family had argued that it would be cruel to even try the treatment as even temporary awareness of her state would have been needlessly cruel to the poor woman.)
Friday, December 15, 2006 by Drew Rosielle MD ·
Thursday, December 14, 2006
Canada's Globe & Mail recently published a provocative editorial about health-care rationing at the end of life. The article is a call to debate, as opposed to making recommendations per se. Its context seems to assume a future crunch in health care dollars in Canada and asks how will decisions be made about what constitutes worthwhile treatments for dying patients. The article throws out questions cutting both ways--why pay for costly treatment at the end of life unlikely to extend life--but also asks by what metric does a society choose to pay for palliative-only interventions?
"What amount of benefit should be considered worthwhile? What is it worth to extend life by a few days? What if this extension in life is accompanied by a decrease in quality of life, because of the toxicity associated with treatment? What is the value of interventions that are not associated with improved survival?"
It mentions the UK's NHS's policy of not approving new treatments that cost more than ~$60,000 per quality adjust year of life gained. How does this fit with costly interventions that do not prolong life at all (intrathecal pumps)?
In the States, palliative care is frequently 'sold' to hospitals and health systems as a money saver, which is probably true currently. The problem with this is that it ties our existence to proving ongoing cost-savings which makes us vulnerable if something changes ( e.g. culture of medicine as a whole--unlikely--or our practice, or payment structures, etc.) and we are no longer so cost-attractive. This requires us to prove our worth in other ways, since policy makers won't be convinced by values-driven messages.
Thanks to Dr. Paul McIntyre for letting me know about this.
Thursday, December 14, 2006 by Drew Rosielle MD ·
Monday, December 11, 2006
Two from the latest American Journal of Medicine.
First is a look at ambulatory patients' knowledge of advanced directives. It comes from a survey of ~500 medicine outpatients in Buffalo, NY in 2004. A lot of data is presented that is probably of little interest to the average reader (including me). What was notable was 86% of the subjects said they didn't know what an 'advanced directive' was (although 86% of those subjects knew what a 'living will' was suggesting at least for this population 'advanced directive' is just not a familiar term, although the concept probably is). (This was also pre-Schiavo and one wonders if that made any difference.) The other notable finding was that over a third of patients did not want to discuss AD's with their provider, the vast majority of whom "didn't want to think about it." That says a lot, although it needs to be stressed that the survey included younger patients.
And from the supportive cancer front, there's a prospective, randomized, open-label trial comparing LMWH (tinzaparin) with coumadin for long-term anti-coagulation for cancer patients with venous thromboembolic (VTE) disease. This was a Canadian, multicenter study which looked at 200 patients with a DVT or PE--the primary outcome was the incidence of recurrent VTE disease. Most had solid tumors, and there was a relatively equal mix between metastatic and limited-stage disease (this was not a study of advanced cancer patients only). Patients received 3 months of LMWH or coumadin (coumadin patients initially received unfractionated heparin). After 3 months patients were taken off protocol (& it's unclear to me how many stayed on any anti-coagulation and if they did if they stayed on coumadin or LMWH or switched etc.)--patients were followed though for 12 months. They had data for 99% of patients randomized. Almost half the patients in each group had died by 12 months (no significant differences or even trends towards differences between the groups). Major bleeding and other complications were pretty equal between the groups. However--at both 6 and 12 months the LMWH group had less recurrent VTE (7% vs. 16% at 12 months, p=.044). This is further evidence that low molecular weight heparins might actually be more efficacious than coumadin for VTE in cancer patients. One can tell that the authors were disappointed that they didn't demonstrate a mortality benefit, although when 50% of your population dies during the study anyway you'd likely need a lot more than 200 patients in order to show a mortality benefit if it existed. That said, this was a missed opportunity for the researchers to look at health-related quality of life to see if it differed between the patients--and for me this is quite frustrating. How can you do such a solid, well-organized intervention study of a population in which 42% of the subjects have metastatic solid tumors and not look at quality of life as an outcome?
Monday, December 11, 2006 by Drew Rosielle MD ·
Saturday, December 9, 2006
As promised, I have upgraded Pallimed to the new Blogger/Blogspot software version. You will notice some layout changes--I tried to keep these as inoffensive as possible. I did widen the blog a little so it will display better on higher-resolution screens, although this meant I had to sacrifice the nicely rounded corners on most of the blog's text frames. If Pallimed no longer displays well on your computer let me know--I write Pallimed with a Mac, using Firefox, and I realize it likely displays differently with PCs & IE. I also had to destroy my previous blogger profile and merge another one I had with the blog. Blah blah blah.
The biggest change for readers is the addition of labels/tags: they should be clearly visible at the bottom of this post. These are tags related to the blog post topic--you can now browse Pallimed by topic by clicking on the label tags at the bottom of each post. (For instance, I labeled this post as 'meta' since it's about the blog itself.) There's also a section with all the labels in the sidebar on the right (since moved to the left). When I'm feeling really idle I may go back to previous posts and start labeling them but I'm not going to promise that. I did label some recent ones to give readers unfamiliar with tags an idea of how they work.
Saturday, December 9, 2006 by Drew Rosielle MD ·
Friday, December 8, 2006
BMJ has an opinion piece about tube feeding in advanced dementia which addresses the issue from a novel perspective. The author, a physician, essentially makes the following argument.... Weight loss in advanced dementia is normal and OK. The muscle wasting associated with progressive physical disability causes a concomitant slowing of the metabolic rate and many patients will lose a lot of weight but eventually settle out, taking in very little nutrition, but enough to supply their meager energy requirements. This is ok, and tube feeding then becomes a non-issue--it's just not indicated. The author provides little evidence to support this, and I can't say that the article will likely change the debate much, particularly as proponents of tube feeding can provide a lot of evidence that weight loss in dementia is associated with increased mortality--that is the only thing in this entire debate about which we can be sure.
Friday, December 8, 2006 by Drew Rosielle MD ·
Thursday, December 7, 2006
CAPC has announced their new website promoting palliative care "getpalliativecare.org." It is mostly informational material aimed at the public (patients and families) about palliative care, where you can get it, etc. It looks like it will be a valuable resource to refer people to. I may try to see if I can get it printed on my business cards with the next lot.
Somewhat controversially (ok, to be honest, I'm the one saying it's controversial), the website distinctly de-emphasizes death & dying. In fact 'death,' 'dying,' 'end of life,' etc. are absent from the main page--replaced (not inaccurately of course) with 'serious illness.' On the page ' What is palliative care?' death and dying aren't really mentioned except to distinguish palliative care from hospice, although I'd wager terminal care is a large component of what most of us in palliative care do. On the other hand the "For clinicians" page lists patient criteria that clinicians should use to trigger palliative care involvement: these criteria (mostly) describe patients likely to die soon. I find this distinction between the two pages interesting but understandable, at least from a promotional standpoint (making 'palliative care' more palatable to patients-- it's about how you live, after all), although the naive fool in me just wishes it didn't have to be this way.
Thursday, December 7, 2006 by Drew Rosielle MD ·
Wednesday, December 6, 2006
NPR's Fresh Air yesterday included an interview with Stephen Kiernan about his book Last Rights: Rescuing the End of Life from the Medical System . (This book appears to be getting a lot of press lately, as it was one of the NY Times articles I mentioned last week.) The interview is quite interesting, and worth its fifteen minutes. In fact, it's the sort of sane, overall accurate coverage that end of life care, palliative care, etc. so desperately needs. My favorite moment was when Terry Gross asked about DNR orders and Mr. Kiernan's immediate response was to talk about how DNR orders are not end of life care plans or advanced directives etc., but, well, just that--DNR orders--and what is desperately needed is real & realistic end of life care planning, etc.
You can listen to the interview online, for free, at the link above.
In keeping with recent tradition, I'll thank my wife, Sarah--who I just discovered is lurking on online knitting bulletin boards under the name ' benjamom'--for alerting me to this.
Wednesday, December 6, 2006 by Drew Rosielle MD ·
Monday, December 4, 2006
Two from the latest Journal of Clinical Oncology
First is an opinion piece about parents refusing standard cancer treatments for children with favorable-prognosis cancer. They describe a case in which a 7 year old with ALL who was undergoing curative chemotherapy (expected 85% chance of a long-term cure), and whose parents stopped the chemotherapy and put the boy under the care of a MD who was also a licensed 'holistic' practitioner. Child protection was notified and declined to intervene, as was the state medical board (regarding the 'holistic' MD) who also declined to intervene. The boy's leukemia relapsed.
The article is mostly a gloss of the pertinent medical-ethical-legal issues. Some interesting points were made: 6 cases like this that have been reported in the legal and ethical literature & of those six, when a licensed physician is responsible for the 'alternative' therapies, the courts have sided with the parents, refusing to judge the relative merits of different medical interventions recommended by different licensed medical practitioners. They also noted that the public reaction to the above case was very supportive of the parents' right to choose therapy for their children. What is interesting here is that apparently the calculus used by the courts is based on the mere fact of there being a licensed physician willing to give the 'alternative' therapies. Medical evidence--the fact that as a scientific and professional community we can say, with broad consensus, that intervention X (chemotherapy and supportive care) is very likely to lead to outcome Y (not dying from cancer when you're 7 years old), and that we can say with equal consensus that there exists no evidence that certain interventions (so called 'holistic ones') will lead to that outcome--apparently doesn't particularly enter into the court's decisions. It's as if there being some guy with an MD and a DEA saying "I'll do this" creates sufficient doubt to warrant parents making a decision that is objectively inferior. The problem of course is where does one draw the line, and clearly a 16 year old requesting 'holistic' treatment is different than a very vulnerable 7 year old's parents doing the requesting, and as medical uncertainty increases, medicine's imperative to treat against parents' wishes decreases, but this case, personally, gives me the willies.
Second is a "systematic review" of complementary & alternative therapies in cancer pain. Following a theme from a post from last week, one could predict the findings prior to even reading the abstract ("there is a paucity of data"). Just to give you an idea of the 'quality' factor that these reviewers were dealing with, I'll highlight one sentence from the Results section: "Two trials were listed as RCTs but did not present any data about comparison with a control group." Ouch. I'll repeat that for emphasis...Ouch. One's not sure how to even to begin to comprehend how such a trial could be published in an ostensibly peer-reviewed venue. The major message, besides the lack of evidence, is that what little there is is suggestive that some mind-body modalities hold some promise (hypnosis, relaxation, etc.). There are general exhortations that there needs to be more, better research into CAM at the end. That is certainly true, but one also has to ask the "Public Health" question. That is--given that there are limited research dollars into cancer symptom management--from a public health standpoint where is the best place to be putting those dollars? Standard medical research? CAM? Research and public programming focused on systems change--changing systems of delivery of care etc in order to improve the management of cancer systems? If I was a betting man I'd say that the 3rd would give you the biggest bang for your buck, but that is clearly my bias--that the epidemic of poorly treated cancer pain is not primarily due to a problem of lack of research into analgesic therapies. As a society we are not obliged to throw our money at research which is likely not to show any benefit.
Monday, December 4, 2006 by Drew Rosielle MD ·