Friday, March 31, 2006

Terri Schiavo - Anniversary of Death

Just a reminder as I am sure many of you in the Palliative Medicine community are aware that today marks the anniversary of the death of Terri Schiavo. Here are links to previous Pallimed posts on the issue (here, here, here, here and here).

Besides both sides of Terri's families making some public statements, and getting ready for book releases (here and here) telling their side of the story, there is not much new to say on the subject.

The important public health issue out of all of this should be to make sure you have a living will and health care power of attorney and that you have talked with multiple friends and family about your wishes should you become incapacitated. I have done mine, but just stumbled across the US Living Will Registry as a place to store it electronically. I will look into the site and report back on it later. Have not heard much about it in the press or medical literature.

Last year, I had an idea that instead of making laws about withholding and withdrawing, etc, was to have every major newspaper on March 31st publish a blank living will document/health care power of attorney document appropriate for their state with guidelines on how to fill it out and talk with families about it, plus contacts for resources. I just don't know how to start making that happen.

The important palliative medicine issue is that we strive to make sure these very complex issues do not get too simplified or misunderstood and that we make sure to have engaging talks with our families and patients about these very real and tough decisions that come from the benefits of our modern medical technology.


Disclaimer: Since this is a sensitive subject for some, I have to reiterate these are my personal views (not my current or former employers) and that the Schiavo case was a very sad case for many reasons and that my goal in medicine is to avoid such things from happening and give patient centered-care with support of family and friends.

Friday, March 31, 2006 by Christian Sinclair ·

yes we got spammed

Yes the ink cartridge post is spam...I don't know how it happened but I'm leaving it on the blog for now to see if the blogspot people know what's going on--it appears someone 'impersonated' me to post this.

Sorry.


April 12, 2006 Addendum:
I have deleted the original spam post.

by Drew Rosielle MD ·

Wednesday, March 29, 2006

Art Buchwald; academic prognosis

More digest entries...

1)
As some of you may know the columnist Art Buchwald has been in a hospice for over a month now as he has decided to forego dialysis.  He has still been writing columns from the hospice (this is a link to all his columns at the Washington Post--you may have to do a free sign-in if you want to read several columns).  Several have been about hospice, death & dying, and even surrogate decision making (he's also recently written about sperm donation, and taken a moment to roast President Bush).  These are non-medical, first-person accounts of dying, decision-making, and hospice which are very rare in the U.S.--especially for such a public figure--and quite interesting to read.  One sort of hopes he lives a long time and keeps on writing, and that others follow.  Thanks to Laurie Lyckholm MD (at VCU) for letting me know about these.

2)
There seems to be a flurry of prognosis type articles in the last few weeks, and here are two more (although these are interesting only from an academic [non-clinical] perspective).

The Journal of General Internal Medicine has an article on mortality risk based on a single disclosure of health status.  It is actually a meta-analysis of studies looking at patient's self-reported global health status, i.e. asking "In general, how would you rate your health?"   They analyzed the results of 22 studies and found that those who stated they had poor health had about a two-fold increased relative risk of death than those who had excellent health.  The studies followed people from ~4 to over 25 years.  

The Journal of the American Geriatrics Society has a piece about the prognostic value of the Vulnerable Elders Survey-13, which is a 13 item tool in which elderly patients answer simple questions about functional status, age, and global health status (aha!).  This was a validation study using a cohort of community dwelling older adults who were screened with the VES-13 upon entry into the study--they were followed for up to 14 months.  Mortality increased with vulnerability score, with the highest group having a ~30% mortality during follow-up.  Again, the clinical utility of this is unclear, and would seem to be best in screening people at highest risk of death or decline (and thus in need of more or different health care services), much like the BMT index, but how much any of this adds to usual clinical care. 

3) JAGS also has an interesting looking article by D Casarett about patients' preferences for life-sustaining care as a barrier to hospice enrollment.  I haven't read it yet but it looks good.

Wednesday, March 29, 2006 by Drew Rosielle MD ·

Monday, March 27, 2006

Cancer symptom assessment review; Death-bed phenomena

2 quickies:

1) The Journal of Clinical Oncology has published a review of symptom assessment instruments in cancer by, not surprisingly, our friends at the Cleveland Clinic. It's probably not of interest to the general palliative care audience, but would be for those involved in research, quality improvement, or symptom data collection for whatever reason. Among other things, I found particularly interesting the authors' discussion of the difficulties of finding articles for the review in Medline, CINAHL, and EMBASE. ~60% of their articles in fact were found by hand searching and not these databases, evidencing that these databases aren't designed for this kind of research.

2) The American Journal of Hospice & Palliative Care has a curious article that I can't resist blogging about because it it's a topic that's interested me since I began work in palliative care: death-bed phenomena (DBP). DBP here means visions and hallucinations (of dead loved ones, angels, heaven, Saints, etc.) of moribund patients. The authors make an interesting distinction between "regular" hallucinations and DBP by defining DBP as perceptions that have significant personal meaning to the patient, as opposed to non-meaningful ones (bugs on the walls, etc). The study is really a summary of the experiences of some members of a palliative care team who were interviewed about DBP. Not surprisingly these were perceived as common, as indicating imminent death, and generally being very existentially meaningful and important to dying patients and their families. A good read.

Monday, March 27, 2006 by Drew Rosielle MD ·

Sunday, March 26, 2006

Get Pallimed updates via email

We have started publishing Pallimed's site feed to FeedBlitz, which means you can now get updates of Pallimed via email. Just use the box on the right sidebar which says "Subscribe to email updates." You can also sign up for updates directly via the FeedBlitz site. This is a new thing for us--it may be buggy--please let us know of problems, etc!

The FeedBlitz FAQ is here; its privacy & "we won't spam you" policy are here. You'll note that we will have access to the Pallimed FeedBlitz subscriber list** which I guess means that Pallimed should have a privacy policy as well. So here it is: Pallimed is a home-brewed labor of love on the part of Christian and me, and we receive no commercial reward from Pallimed, and have no intentions of ever doing so. Any email addresses and personal information that is collected by FeedBlitz will remain private--we won't do anything with them, we won't email you, we won't distribute information, you can unsubscribe from FeedBlitz at any time, and we will go hunting with the Vice-president if we break this policy.

We are setting up this service because in the past people have expressed a desire to get update notices from Pallimed, and as past posts indicate the whole Syndication-RSS-Atom thing is a pretty confusing way to get updates at times.

**You can subscribe anonymously to our updates--read the FAQ--it involves signing up for FeedBlitz with your email and then on your profile making yourself anonymous. Only FeedBlitz (not us) will have access to your email address then.

(Thanks to Christian for finding this service.)

Sunday, March 26, 2006 by Drew Rosielle MD ·

Friday, March 24, 2006

Physicians' role in executions; Muslims & alcohol hand-rubs

A couple of non-palliative care related articles on ethics that I have found interesting this week--they'd make nice, light weekend reading.

1) The NEJM has a fascinating piece about physicians and their role in executions in the US (free full-text is available). The author has interviewed several docs who have done this and writes about the docs' perspective. There's also a terse and very readable history of the death penalty and physician's role in it in the US. Highly recommended.

2) Lancet has a brief overview of alcohol-based hand-rubs, and some Muslims' concerns about using these. It's part of an entire issue dedicated to medicine in the Islamic world.

Friday, March 24, 2006 by Drew Rosielle MD ·

Wednesday, March 22, 2006

The Seattle Heart Failure Model for predicting prognosis in CHF

Circulation has published an article about the derivation and validation of the Seattle Heart Failure Model (an online version of the model is available here--it's kind of fun to play around with). It is a survival model based on clinical and laboratory characteristics. It can uses relatively easily identifiable clinical (age, weight, NYHA class, etc) and measured data (hemoglobin, uric acid, ejection fraction, cholesterol, etc). Interestingly it also includes interventions (both drug and device) and you can see how the addition of these affects prognosis if you add them. It gives you mean survival in years, as well as expected 1, 2, and 3 year survival in percentages.

The Circulation article describes its development. It used data from 6 cohorts of patients (outpatients with mostly left-sided systolic heart failure), which was gathered in other controlled trials; they used multivariate analyses to derive the prediction model using one trial (n=1100), then validated it using the patient data from the 5 other trials (n=10,000). Of note they mention that the biggest univariate predictor of death was diuretic use (in milligrams of furosemide equivalents per kilogram of body mass). These are graphs from both the derivation and validation cohorts (predicted vs. actual mortality), showing generally very tight fits.

(Click to see full size.)

I'm not really qualified to judge the validity of this, but I'm curious to see how it is going to be used. Its feature letting you "see" the mortality benefit from adding in a device is curious, and open to misinterpretation it seems. Its use in the palliative world, obviously, would be to identify those patients at particularly high risk of death and thus "in need" of palliative-oriented services--but what this model adds over usual clinical assessment is unclear as of now. Also, this used data from controlled trials which generally have highly select patient groups in them--not necessarily healthy patients (many involved NYHA Class 3 & 4 patients)--but perhaps ones with fewer comorbidities etc (I have not looked at the in-/exclusion criteria for these trials of course). A prospective multicenter validation would be nice. Also, when looking at the graphs, one gets the impression that most of the subjects in these trials had estimated and actual survivals well over 1 year, which makes me wonder how accurate this will be for the sickest patients with the potentially shortest estimated survivals...

Wednesday, March 22, 2006 by Drew Rosielle MD ·

Hematologic malignancy prognosis; Sex differences in pain

A few things in brief...

Annals of Internal Medicine has an article about the development of a prognostic index for bone marrow transplant patients. It uses 8 variables--age, stem cell donor type, disease risk, conditioning regimen, FEV-1, DLCO, creatinine level, and ALT--and predicts who has a high likelihood (~80% in the highest risk group) of dying within 2 years. It has not been externally validated beyond the cohort in which it was developed. If one was inclined towards such things, this could be used to screen patients receiving BMT's for whom early palliative care referral for advanced care planning, etc. would be indicated.

Along these lines Drugs & Aging recently published a review of trends in the treatment of AML amongst the elderly in the US. Prgnosis remains dismal (>90% 2 year mortality for people over 65 years; median survival is less than 4 months)--but the use of hospice services doubled across the 1990's. (Rates of use of chemotherapy also increased but without evidence of improved survival across the cohort unfortunately.)

Back to Annals of Internal Medicine, there's also an interesting bit about sex differences in pain, involving receptors mu, kappa, and melanocortin. It's mostly basic science stuff, but casually written and an easy read (for those of us whose seizure threshold is lowered by reading basic science research).

by Drew Rosielle MD ·

AAHPM call for proposals & Int'l Conf in Montreal

AAHPM has announced open calls for proposals for the 2007 Annual Assembly.


The first call is open from March 15th-May 1st and is for 60 minute didactic sessions and the 4 hour block pre-cons.

---------------------------------------

The International Congress on Care of the Terminally Ill sponsored by McGill University has just put up a nice web site for the conference (also know as Balfour Mount's conference). I have never been to it but have heard many great things about it. It only takes place every two years and is usually more holistic in its approach without sacrificing a high level of clinical content.

You can check it out in French and English.

by Christian Sinclair ·

Tuesday, March 21, 2006

Trial of a coping skills intervention for family caregivers of cancer patients

Cancer has published an interesting trial of a coping skills intervention for family caregivers of hospice patients. It is a randomized trial involving ~350 family caregivers of cancer patients who were receiving hospice services. The subjects were randomized to usual care, non-specific support visits, and a structured coping-skills intervention. This is the authors' description of the structured intervention ("COPE"):

This coping intervention derives from the conceptual and research literature on problem solving training and therapy. The Family COPE model adapts these concepts to address the specific needs of families caring for persons with cancer at home. The model has four components: Creativity (viewing problems from different perspectives to develop new strategies for solving caregiving problems, e.g., "What could I do to distract Dad from his pain?"); Optimism (having a positive, but realistic, attitude toward the problem-solving process, e.g., "I believe I can help Dad with his pain."). This includes communicating realistic optimism to the patient by showing both understanding and hope and involves patients, as much as possible, in planning; Planning (setting reasonable caregiving goals and thinking out, in advance, the steps necessary to reach those goals, e.g., "How can I get Dad ready for our family holiday party?"); and Expert information (what nonprofessionals need to know about the nature of the problem, when to get professional help, and what family caregivers can do on their own to deal with the problem, e.g., "Where can I go to get help with Dad's pain?").

Basically, the subjects in the COPE arm of the trial had improved quality of life, as well as less of a sense of 'burden.'

A few things about this. First, this is a heartening trial to see--a well designed, randomized trial with reasonable control groups (the two controls--both a usual care group and a non-specific support group who received the same amount of time in support as the COPE group did) in a hospice population (well, at least a hospice caregiver population). The trouble with these trials for me is that they use a wide variety of measurement instruments (quality of life, etc.)--half of which I've never heard of--and although the results are legit--the COPE intervention produced measurable and significant results--I don't have any sense of the magnitude of the benefit. Was it big enough that this is some great thing which should be offered to everyone, or were the benefits relatively modest and not necessarily worth the cost outside of a trial, etc? Hopefully this will be answered with future trials. It definitely gives boost to a growing area of interest in supportive cancer care/palliative care--family caregiver well-being (see related posts here & here & here).

Tuesday, March 21, 2006 by Drew Rosielle MD ·

Pallimed's debut for Grand Rounds

Pallimed debuted today on Grand Rounds hosted by Elisa at Healthyconcerns.com. For those of you regular Pallimed readers not in the know or new to the blogging world (I refuse to say blog-o-sphere....darn it I said it.), Grand Rounds is a weekly 'best of' column hosted by different blogs each week. You can find an archive of past Grand rounds here.

by Christian Sinclair ·

Monday, March 20, 2006

Oregon Death with Dignity report released

Oregon released the eighth annual report on the Death with Dignity act that enables patients to have access to barbituates for physician-assisted suicide (PAS). While you may not agree with the ethics, morals, or legality of PAS, if you are in the field of palliative medicine or hospice it is very helpful to be aware of this data so that in our eternal job of public education about end-of-life issues, our discussions are not relegated to heated slings of mud about the 'rightness' or 'wrongness' of PAS.

One of the major concerns about PAS in Oregon is the slippery slope effect. Here is the graph from the report showing that there seems to be a plateau effect over the last few years.


There are still a number of patients who request PAS and get the prescription filled but either die from their disease or are still living and have not decided to take it; most presume this is an issue of control and not a true desired for hastened death. 'If I have the means for PAS, then I won't have to do it, because I have control over my life.'

Another concern about PAS is that it will be encouraged for those of little means or education. The data from Oregon demonstrate a higher level of baccalaureate degrees (37% vs 15%) when compared to all deaths in Oregon. So the data does not necessarily support this argument.

Some interesting notes about PAS is that it is not without errors or complications. Two patients vomited the medicines back up, and there was one patient who took the barbituates for PAS but then woke 67 hours later, only to die of his underlying illness 14 days later. There is an article from the Netherlands about other complications, the most frequent one being that PAS or euthanasia took longer than expected. Somehow I find this odd when listed as a complication of euthanasia or PAS.

But the most interesting data is the reason for requesting PAS which is often tied to issues of dignity, decreasing ability to do activities, and loss of autonomy. These are things that medicine does not have an easy solution for. No pills, no surgeries to fix these problems. It often involves a lot of talking and approaching this sensitive topic with trust, sincerity, and respect for the person and where they are in their life. Chochinov's Dignity Therapy is one approach to start increasing awareness of these concerns in our vulnerable end-of-life patients. Hospice and palliative medicine services and the interdisciplinary, whole-person approach may avoid having to resort to PAS or euthanasia, especially if started early in the course of a life-threatening disease.

While I have had a number of patients request PAS or euthanasia, I have never performed it, but used the opportunity to build trust and explore what is the nature of their suffering to ask for such a final measure. It is these moments in connecting with patients that I truly enjoy palliative medicine.

(My Standard Disclaimer: 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.)

Monday, March 20, 2006 by Christian Sinclair ·

Terminal patients in the ICU and organ donation

In my job as a palliative medicine doctor, I am frequently talking with patients and families about the potential of withdrawal of ventilators/pressors/dialysis in the ICU. Obviously this is not the only thing I talk about, but it often comes up in discussing dignity and futility and all the things that demonstrate our limits with modern medicine.

One of the things I have not seen implemented well (in person or in literature) is a way to make organ donation and palliative medicine work a little closer together. An article in the current Intensive Care Medicine describes a pilot project to develop a program for non-beating heart donors (NBHD) after withdrawal of life support. This Swiss study was prospective and identified 73 of 516 deaths that might be appropriate for NBHD of kidney, liver or lung. While they found that there was too much variability in how patients died in the ICU after withdrawal to implement their program, they did come up with some interesting data and discussions.

Part of the dilemma in implementing a NBHD organ procurement program was the variability of time after withdrawal of intubation or pressors. They note it would be hard to have a surgical team on standby for a variably prognostic cardiac death versus a brain death where the organs are procured in the OR after the aorta is clamped (from my ancient 1998 knowledge during my organ transplant rotation on surgery).

But this does give some helpful prognostic information for professionals dealing with near-death prognostication and how to communicate to family members.

------------------------------------------Survival time (h)
Traumatic brain injury (n = 21) ----------> 6.1 (2.4 -– 12.5)
Stroke (n = 25) --------------------------> 3.9 (1.3 -– 11.5)
Anoxic brain injury (n = 27) --------------> 3.6 (1.0 -– 9.8)
All patients (n = 73) ----------------------> 4.8 (1.4 - 11.5)


But it really gets interesting as they discuss the ethics of purposely hastening death with opioids and sedatives for the purpose of improved procurement times for NHBD. They cite a JAMA article about the European ETHICUS study that states this happened in 6.5% of ICU deaths. (I will comment on that older article after I get a chance to read it more closely.)

Although they clearly state that the ethics of utility/distributive justice may demonstrate this approach to be ok, they note it does violate beneficence and the principle of double-effect. All of this gets me to my point in reading this article which was....should there be more integration between palliative medicine and organ transplantation?

On one hand palliative medicine professionals are good communicators as are organ transplant procurement professionals. We could minimize the trauma of discussing these issues with family members if we worked together more closely...BUT could we also portray that we are working 'in cahoots' to grab as many organs as we can, thus tainting the noble goals of palliative medicine with the mis-perception of becoming a vulture? I am not sure where to sit on this fence, but it is an idea that I have not come across much in the palliative medicine literature.

It reminds me of how a colleague of mine sees the euthanasia/physician-assisted suicide (PAS) issue and its relevance to hospice. If hospice/palliative medicine professionals (THE experts at suffering at the end of life) are also the same people who assist with PAS or euthanasia, it would risk people not coming to us for help because they would fear we would push euthanasia or PAS voluntarily or involuntarily, and therefore we would do less healing and comforting.

(My Standard Disclaimer: 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.)

(PS: I have used this disclaimer ever since I gave Resident Grand Rounds on the controversy of euthanasia and PAS, because so many people got the wrong idea because I wanted to discuss the ethical dilemmas inherent within.)

Free article of the text available by registering for Springer Link (pretty quick and simple)

by Christian Sinclair ·

Wednesday, March 15, 2006

Delirium review; depression maintenance therapy; palliative sedation controversies

1)
NEJM has a review of delirium in elderly patients. It's pretty basic. The author claims that 30-40% of cases can be prevented in the hospital, via multidimensional interventions, but interestingly fails to mention a recent randomized, controlled trial of haloperidol which substantially reduced delirium length and morbidity amongst hospitalized hip fracture patients. In addition the author suggests that pharmacologic treatment of delirium should be reserved for only those patients whose delirium threatens their safety or interferes with medical care. This seems a bit extreme and unsupported by the literature--the aforementioned haloperidol trial showed a decrease in hospital length of stay by 5 days which is nothing to sneeze at. Granted this was a study of giving haloperidol prior to (as well as then during) delirium--but it's suggestive--and if anything argues that pharmacologic therapy should be started in all high risk patients prophylactically--not reserved for the most extreme cases! More research is needed, which is the truest cliche in all of medicine...

2)
There's also (in NEJM) a randomized-controlled trial looking at maintenance therapy for depression in the elderly. It randomized elderly patients who had responded to paroxetine and psychotherapy to combinations of placebo, ongoing paroxetine, and maintenance psychotherapy. To be brief, ongoing drug treatment was clearly best--the risk of recurrence was 2.4 times higher off paroxetine than on with a number needed to treat of 4 to prevent a single recurrence (4 is an excellent NNT). Psychotherapy didn't seem to make much difference one way or the other.

3)
JAMA has published letters responding to the recent palliative sedation article which I posted about previously. One raises the same concerns that I did in my post about the original article's claim that in some circumstances palliative sedation was acceptable even for those with life expectancies of several months (they cited the principle of proportionality among other things to support this). Here is the authors' response to that concern:

Fulfilling the ethical requirement of proportionality requires a balancing of quantity and quality of life. This weighing will depend not only on the severity and intractability of symptoms but also on the particular patient's values and preferences. Individuals interpret the idea of the sanctity or intrinsic value of life in different ways. Dworkin stated that "People who want an early peaceful death for themselves or their relatives are not rejecting or denigrating the sanctity of life; on the contrary, they believe that a quicker death shows more respect for life than a protracted one." In our view, it is not unreasonable for a terminally ill patient who is informed of the options and their consequences to choose relief of suffering over the prospect of additional months of survival burdened by severe pain or other symptoms.

It seems they are saying that proportionality is in the eyes of the beholder. And wanting a quicker death being evidence of "more respect for life" seems like rhetorical chicanery to me, and death-denying. "Death-denying" in the sense that the process of death is 'natural' (I hate that word...how about 'a normal part of life') and cutting that short because you couldn't be bothered doesn't smell like life-affirmation to me. These circumstances are probably extraordinarily rare, at least in the US, and perhaps part of my problem is I'm having trouble imagining a scenario in which a person with a life expectancy of months has no options left to relieve physical suffering other than someone putting them into a pharmacologic coma until they die. (Granted, my lack of imagination should not be grounds for anything). This is why I suspect this discussion is about palliative sedation for existential suffering, which is something I have trouble with ethically, but that's a post for another day, or for the comments section.

(I am sick with pharygitis and sinus headaches and I find it interesting that I made two gratuitous nasal references in the above post.)

Wednesday, March 15, 2006 by Drew Rosielle MD ·

Monday, March 13, 2006

Accuracy of surrogate decision making; Physicians' willingness to limit life-sustaining care

Two articles from the latest Archives of Internal Medicine:

1)
First is a systematic review of the accuracy of surrogate decision makers. The authors looked at 16 trials of patients and their surrogate decision makers; all trials looked at patients' and surrogates' responses to hypothetical situations. Agreement between them regarding medical decisions in a variety of situations was 68% overall, which was generally consistent across several studied scenarios (ranging ~58%-70% agreement). There was no improvement in this when comparing designated decision makers vs. 'default' ones (that is--who would be the designated decision maker by state law where applicable). The 2 'intervention' trials--all of which had some patients talk with proxies in an uncontrolled fashion prior to being surveyed--showed essentially no difference from the intervention (one showed in fact a tiny decrement in agreement with discussion). They didn't really look at this systematically but most trials found surrogates wanted more interventions than patients, although many showed no difference and a few showed the opposite.

So what to make of this? First off, none of this is new and the trials were quite heterogeneous, although it is interesting how this 2/3 agreement finding is consistent across the trials. I'm not sure whether I think 2/3 is great (that it's so high) or terrible (that it's so low). Clearly it's not going to be 100% but one I guess would hope for ~90. The authors use language in the conclusion stating that prior discussions don't improve surrogate decision making. While that's true in that it has not been shown, they are basing this off 2 articles in which the discussions were uncontrolled, suggesting that there's a lot more room for research on this matter. All of this, to me, gets to the problems of advanced directives and the attempt by some to use them as ways of specifically directing medical care. It is hard enough sitting at the beside or in a family conference discussing complicated medical decision making with patients/families--helping them understand the issues, the decisions to be made and their consequences etc.--that I can't imagine trying to express that in a written document without any knowledge of what decisions one would ever be faced with. Do most people really 'know' if they'd want to be intubated or not? Or if they'd agree to going to a long-term care facility (my state's form has a box you can check saying your surrogate can't admit you to a long-term care facility)? A few do, and things certainly get clearer the closer one is to death, but most don't, and advanced directives should be made when one is relatively well. AD's to me are best as statements of values (what is important to patients in the setting of a life threatening illness, what is of value in their life, and perhaps what they don't find valuable, such as a beating heart without a functioning brain) and permissions (explicitly giving permission for x, y, and z which is usually some variation of 'it's ok to stop burdensome or life-prolonging treatments in the setting of neurologic devastation, or a progressive life-threatening disease that's not likely to get better, etc.'). The permissions bit is important particularly to families feeling burdened with what seems to them as life & death decisions being plunked at their feet. More explicit than this seems inappropriate for most advanced directives, although there are exceptions. All of this is to say that it is unrealistic to expect that patients talking with families is going to be anything more than a discussion of values and permissions. Indeed it can't be more than that--it can't be "If X & Y happen to me and the doctor say P & Q I would want you to do Z." Medical decisions are messy, and part of what I'm wondering is if proxy decision making can't get cleaner than 2/3 accurate for the above reasons. I'd welcome a trial that proved me wrong, though!

2)
More along the lines of hypothetical decision making.
The second article is about physician willingness to withhold or withdraw life-sustaining treatments. It is from a survey of 400 internists in the US (this represented a 41% response rate for the survey; most were in private practice; a mix of general and subspecialists were surveyed). This was one of those create several scenarios, vary the details deliberately, and see how people respond differently type of studies. The details that were mixed up were decision making capacity of the patient, whether they were terminally ill or quadriplegic, whether the scenario involved withholding or withdrawing a treatment, and the treatment in question (dialysis, ventilator, artificial nutrition/hydration, antibiotics); all scenarios involved explicit requests by patients or proxies to stop or withhold a treatment, and it was made clear the patients weren't depressed etc. The results were not surprising, but somewhat discouraging. The surveyed physicians were less willing to assent to the patients'/proxies' requests if it involved withdrawing vs. withholding a treatment, if it involved antibiotics or artificial nutrition/hydration vs. the vent or dialysis, and if the patients were alert vs. demented or terminally ill. Prepare to be assaulted by your internist if you're quadriplegic and need dialysis but don't want it! That's a little flip, and I've written for too long tonight already, but I'll close by emphasizing that this study was not of what the docs thought was best, or what they'd recommend, but what they'd do if a patient said "No."

Monday, March 13, 2006 by Drew Rosielle MD ·

Saturday, March 11, 2006

Changing Hospice Reimbursement? Just exploring options.

NHPCO released a report from a MEDPAC (Medicare Payment Advisory Commission) on 3/10/06 looking at a large, for profit hospice and where the highest cost days come in.

They summarized that the first and last days of care under hospice (admission and day of death) typically use a higher level of resources, and they suggested a possible higher level of reimbursement for those days. This is an interesting proposal that would reflect better understanding of how hospices function.

FY 2006 Medicare spending on hospice is 9.8B (compared to 6.7Bin FY 2003) and with the baby boomers they are expecting an increase in hospice utilization, so this could have profound impacts for the future. (FYI total Medicare expenditures, excl admin is 325B for 2005)

-----------
Quick follow-up comment:
One dilemma with this study and how it affects reimbursement recommendations to Medicare is that the RAND corporation only looked at a single multi-site for-profit hospice, which a couple of studies (here and here)have suggested that having a for-profit status means less skilled visits and usually higher profit margins. So what?

Well if Medicare reimbursement changes based on this info, it will likely decrease hospice per diem funding therefore crunching non-profit based hospices which typically have smaller profit margins.

Disclaimer: My employer is a non-profit hospice. And I do not believe that all for profit hospices are bad. Some of my best friends work at for profits!

Saturday, March 11, 2006 by Christian Sinclair ·

Decision making; supportive care vs. nano-technology; the DEA FAQ; force-feeding prisoners; AAHPM PIT-SIG

I don't know if it's because I'm too busy, or because so much stuff is coming out, or because Christian is semi-out-of-commission with his fatherly duties, but I'm having a hard time keeping up with everything pouring out right now. Thus you are being treated to more digest like summaries of publications. I will get back to cranky reviews at some point hopefully soon.

So, in brief...
Journal of Clinical Oncology has an article on patients' decision making processes regarding chemotherapy for metastatic breast cancer. Among other things it looks at patients' perceptions of being active, passive, or collaborative decision makers, with some interesting findings (about half the cohort described themselves as passive decision makers--doing whatever the doctor recommends). However this is a relatively small single institution study & I'm not sure if much can be made of their findings. Studies like these are interesting snap shots into some of the contingencies of difficult medical decision making, but I'm generally not sure what can be done with their findings other than than communication and decision making support should be honest, empathetic, individualized, etc.

The March 10th JCO is all about neuro-oncology and has a couple of articles to note, especially us non-oncologists who help care for these patients at the end of life--good background information, etc. One is a review of current treatment of high-grade astrocytomas (which, as far as I can tell, means glioblastomas). It is a nice overview of the field. Continuing my score-card of noting how much of a nod palliative/supportive care gets in oncology review articles of highly-lethal cancers, this piece gives pall/supp care a small paragraph (approximately the same amount of column space as nano-particle technology). Perhaps this should become my new standard of 'equal coverage'--supportive care vs nanotechnology. There's also a nice, general review of whole brain radiotherapy for brain mets.

Also the law...
The current Pain Medicine has a special section on the DEA and pain medicine, focusing mostly on the infamous DEA FAQ (Table of Contents here--the articles are 2/3 of the way down under "Forensic Pain Medicine Section"). The section has multiple commentaries by pain docs (including Steve Passik) about this; a lot of them focusing on the controversies and confusions surrounding "Do not fill" prescriptions (for example--writing a prescription dated March 10, 2006 but noting on it "Do not fill until April 10, 2006"). Of particular interest in a brief legal history of the DEA surrounding DNFs by a lawyer. The general consensus seems to be that the DEA is not genuinely interested in an honest dialogue with docs or patients about this, and that the DEA is perpetuating a climate where docs are hesitant to treat pain with controlled substances. Perhaps things will get better in 2009 (ahem)....

While we're there there's also a case report about botox for post-herpetic neuralgia.

NEJM continues the DEA trend with a legal exegesis of the Supreme's Court's physician assisted suicide/Controlled Substances Act decision by GJ Annas (free full text is available).

As well as ethics...
Lancet has published a letter about the practice of force-feeding inmates at Guantanamo Bay (and yes, I know I vowed never to directly link to the Lancet website again because of their policy of forced sign-ins, but this is not listed in PubMed yet and I'm not organized well enough to keep track of this until it is).

Oh yes and the PIT-SIG...
By the way if you're a palliative care professional in training (medical students, residents, fellows, as well as allied professionals) the AAHPM's Professionals In Training Special Interest Group has a blog (pitsig.blogspot.com) about the group's activities. The PIT-SIG also has an email listserv, and we are generally very interested in hearing from PITs about what's going on, how the PIT-SIG can help people, whatever. Drop Christian or me a note if you're interested.

by Drew Rosielle MD ·

Thursday, March 9, 2006

Journal of Supportive Oncology

If you have not stumbled across this very good journal, I would encourage you to check out the site. The Journal is available for free subscription for:

US-based physicians, nurses, nurse practitioners, and physician assistants specializing in medical or radiation oncology, hematology, pain medicine, or palliative care.
It covers the symptom, and quality of life aspects of oncology and very helpful for any palliative medicine practitioner. All back articles are available online as well.

Thursday, March 9, 2006 by Christian Sinclair ·

NHPCO - It's About How You Live Ribbon

For those of you interested in wearing ribbons to help further a cause, the NHPCO has made white ribbons stating "It's About How You Live" that are white to help push advance care planning, always a good thing. It is all part of a bigger campaign using the acronym LIVE:

  • Learn about options for end-of-life care
  • Implement plans to ensure your wishes are honored
  • Voice decisions to family, friends and health care providers
  • Engage others in conversations about the importance of advance care planning
Unfortunately, they are sold out until March 17th, but you can still place an order.

And just to prove I am not just all talk, I did bring as a gift for my family reunion last year, I brought every adult a copy of the Five Wishes documents. It was a very interesting reception I received when I passed them out, needless to say, but with a little conversation it got a little better.

by Christian Sinclair ·

Tuesday, March 7, 2006

Canadians on dignity

Two recent articles about psychosocial and spiritual aspects of dying, both by Canadians.

1)
HM Chochinov has a tour de force of a review article (free full-text appears to be available) on psychosocial & spiritual aspects of death and dying in the journal CA. It is a thorough, eloquent, narrative review on the topic, covering spirituality and existential suffering and meaning at the end of life, hopelessness, psychiatric problems, dignity, etc. It has a strong practical focus, referring to Chochinov's own dignity therapy work among other things. It came for me at the end of a long, exhausting day today, when I was finally able to sit down with a patient whose care had been causing a lot of conflict and angst amongst his primary medical team. I sat down and found a terrified, frustrated man, pissed off about dying young who had been sensing that his docs had no clue what to do with him other than watch him die (this was mostly accurate). He talked to me about what he was afraid of and angry about. He told me about his job and the devastation of losing it because of his illness. We parted, me commiserating with him, wishing I had either good news or answers to his questions (I had neither). But damn I walked out of there feeling the best I had all day. All of this is to say I wonder to what extent 'dignity therapy' (apologies here to Dr. Chochinov) is a two-way street, and gives us 'care providers' the sustenance we need to witness so much suffering.

Anyway, a good article to stick in the teaching file.

2)
The Canadian Medical Association Journal has published a study on what patients and families think is important regarding their care at the end of life. Nothing surprising here--trust in docs, symptoms addressed, avoiding burdensome care, etc.

Tuesday, March 7, 2006 by Drew Rosielle MD ·

Friday, March 3, 2006

Patients' knowledge of cancer treatment intent; caregiver depression; DNR discussions; home death

Things are really stacking up so here's several brief articles of note...

The European Journal of Cancer Care has a paper about cancer patients' understanding of the intent of their cancer treatment (that is--whether it's intended to cure them or not). It's a single institution study of people with advanced (that is--incurable) cancer in Australia and results are consistent with previous studies: half the patients didn't know that their chemo or radiation was 'non-curative.' They either didn't know one way or the other or thought it was curative. Twenty percent of the patients did not realize they had life-threatening malignancies. Married patients and sicker patients understood treatment intent better. This is an interesting and well-established phenomenon which is probably not simply a consequence of 'poor communication' on the part of oncologists (although it would have been interesting if the authors had looked to see if particular oncologists were 'risk factors' for patient understanding or misunderstanding). Patients hear what they want to hear to an extent, and discussions of prognosis and 'the big picture' often occur slowly, dance-like, with unspoken agreements about what can and cannot be said between patients and their oncologists, and often this is completely appropriate. How then to measure 'appropriate' or 'inadequate' communication?

American Journal of Geriatric Psychiatry has a study about length of hospice enrollment and subsequent depression in family caregivers. 175 caregivers were studied, prospectively (horray!), and shorter length of hospice stay did not seem to be associated with depression in the bereavement period.

Two articles in different issues of recent BMJ's:
1. A single-institution study about asking patients about resuscitation wishes suggests that often patients being admitted to hospital medical services cannot participate in these conversations because they're too sick or busy getting tests. It also suggests rates of DNR discussions are so low because patients don't want to talk about it. They derive this latter conclusion though based on the fact that most patients didn't want to participate in their study about DNR conversations which is a different matter. The whole thing rather bothered me and somewhat perpetuated the idea that DNR discussions are some separate entity which can/should be tacked onto a history and physical upon hospital admission instead of being a part of a larger discussion of goals of care.

2. A systematic review on factors predicting whether cancer patients die at home. Nothing surprising--low functional status, patient preference, family support were strong correlates of a home death--but a nice review of the topic.

Friday, March 3, 2006 by Drew Rosielle MD ·

Wednesday, March 1, 2006

4 year mortality prognostic index

Some of you have probably heard about this in the news.

JAMA has published an important article about the development of a 4 year mortality prognostic index for adults over 50 years old.  It is based on prospectively gathered self-reported data of Americans over 50 years old.  People in the study answered demographic questions, as well as ones about comorbidities and functional status.  The researchers then followed these people (about 19,000 total), kept track of who died, then analyzed the original data set to see what predicted who would die in the 4 years of the study.  They developed a 12 item scale, with points for each item, such that the more points one has the higher one's 4 year mortality risk is.  The 12 items are in the abstract--I'm not going to repeat them all here--they are age, male sex, and then major medical morbidities and functional limitations.  Those in the highest point category had the highest risk of death (64%) in the 4 years.

A few points about this.  The index is nicely made up of easily identifiable qualities (demographics, diseases, easy to answer functional assessment questions).  The overall study is another broad endorsement of the importance of functional status in prognostication.  In the bivariate analysis the presence of functional limitations (eg. with using telephone, preparing meals, bathing, walking several block) had odds ratios of death as high or higher than most of the medical comorbidities (including smoking, diabetes, coronary heart disease, and cancer).  Although the sample size was large, involved the entire US,  and was relatively ethnically diverse, this is a single study and further validation is needed.  However, this index gives us some of information needed to 'build care arrangements around the trajectory of dying .'  By 'us' I mean people concerned with changing the way older, medically frail people are cared for, whether they are "dying" or not.  Prepare for this thing to be misused of course and for confusion to reign.  But it may help some physicians (& patients and families?) to understand how fragile some patients are, and plan accordingly.

I'm too young for it but have already plugged my parents in....

Wednesday, March 1, 2006 by Drew Rosielle MD ·