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Simulating pain crisis 

Sunday, August 31, 2008 by Thomas Quinn, APRN ·


Hospital Mortality Statistics and Palliative Care Teams


Several news agencies and likely your local TV news (but curiously not the NY Times, Washington Post, or Wall Street Journal) had articles in the past week highlighting the online publication of a nationwide hospital mortality database from Medicare data. The information is drawn from inpatient mortality rates from heart failure, myocardial infarctions (heart attacks) and pneumonia cases. Drew commented last year on a JAMA article last year about the usefulness of mortality rates as quality indicators.1

Note: inpatient mortality is qualified as dying within 30d of hospital admission regardless of location of care at time of death.

Let's consider the ways palliative care can affect the inpatient mortality rate for any of these three conditions:

First, does a hospital have a palliative care team?
Your hospital may fear adding a palliative care team because it may errantly believe palliative care will increase their inpatient mortality rate. But one must consider that an effective palliative care team can facilitate safe and appropriate discharge plans, that can reduce unneeded readmission due to system errors, and by connecting patients with helpful outpatient services such as hospice.

Second, does a hospital have an effective, multi-disciplinary team that has wide penetration across diagnoses and clinical services?
A palliative care team that only sees patients in the ICU or oncology floor may not have a hospital wide impact on these three diseases. So therefore any effect on the inpatient mortality rate may be minimized

Third, does your hospital administration know that any patient who is receiving goals of comfort care is excluded from this mortality rate?
Here is the language from the Joint Commission Appendix on Hospital Quality Measures:

Beginning with patients discharged in July 2006, patients receiving only comfort care (support for the dying patient) were excluded from all of the heart attack and heart failure measures. This exclusion had previously been applied only in the pneumonia measure population. With the addition of this exclusion in the heart attack and heart failure measure population, it is likely that some actual measure rates may change from previous reporting periods.

Physician/nurse practitioner/physician assistant document that the patient was receiving comfort measures only. This is commonly referred to as “palliative care” in the medical community and “comfort care” by the general public. Palliative care includes attention to the psychological and spiritual needs of the patient and support for the dying patient and the patient's family. Usual interventions are not received because a medical decision was made to limit care to comfort measures only. Comfort Measures only are not equivalent to the following: Do Not Resuscitate (DNR), living will, no code, no heroic measure.

I looked at some local hospitals for heart attack 30-day mortality. These hospitals are in the 200-300 bed range. The absolute number of heart attack mortalities in a year were in the 60-80's. Imagine the coder utilizing the palliative care modifier (v66.7 from ICD-9-CM) on some of these patients who could be seen by palliative care. Even if you saw 1 more cardiac patient a month, you could potentially decrease these absolute mortality numbers by 10-20%.

So there you have it; another way to market the benefits of palliative care to your hospital administration. Does anyone know if CAPC highlights this at all? Has anyone gone to the hospital coders or administrators to discuss this?

1. Holloway, RG; Quill TE. Mortality as a Measure of Quality: Implications for Palliative and End-of-Life Care. JAMA. 2007;298:802-804. 10.1001/jama.298.7.802 DOI

Monday, August 25, 2008 by Christian Sinclair ·

Preparing for the Palliative Medicine Boards


In the July issue of the Journal of Palliative Medicine, there was a brief news note on how to prepare for the upcoming Palliative Medicine Boards. There was a lot of good advice in there about reviewing the outlined content for the exam, becoming familiar with review courses* and review materials, and the upcoming HPM Pass practice exam**.

There was even mention of some great online resources like EPEC-O, Fast Facts, the Palliative Care Journal Club and Pallimed. Except that Pallimed was not listed as a good tool for reviewing for the boards. Well, I want to tell you I think Pallimed is a great free tool to review for the boards. Obviously, I am a bit biased. And of course, I mean no disrespect to the others, since I reference them often!

But honestly if you are looking at using Pallimed as a Board Review resource I would not advise solely depending on Pallimed unless you have a good foundation of palliative medicine basics. With 3+ years of reviews of the important literature for palliative care right here at your fingertips I don't think it will hurt your score at all.

Let us know in the comments if you are using Pallimed to review for the boards, or what other resources you find most helpful. I seem to be getting a lot more emails lately about how to review for the boards, so maybe the community might help answer this better.

If it could be shown, I would bet all Pallimed readers would score higher on the boards then non-Pallimed readers, because you are all smart enough to be here. You are also very good-looking.

For full disclosure:
*Disclaimer: I am speaking at the Current Concepts course (Aug 08) and receiving speaking fees. Feel free to come say hello on Thursday!
**Disclaimer: I am a reviewer for the HPM Pass questions but am not receiving fees.

Lupu DE, Davis LG, Weir S. Preparing for the Hospice and Palliative Medicine Certification Examination. Journal of Palliative Medicine. July 2008, 11(6): 814-815. DOI: 10.1089/jpm.2008.9887
 1. NYT on Choosing Chemo
Jane Brody highlights how tough it is to make decisions about a chemotherapy plan in the New York Times. The article makes reference to the JAMA article about chemotherapy at the end of life we had blogged about in June. (HT: Hospice & Caregiving Blog from HFA) 2. Best Blog Post Title of the Year Nominee

Methadone for cancer (no) and cancer pain (yes)

An anonymous pharmacologist who blogs for ScienceBlogs reviews a report that methadone may actually kill leukemia cells by inducing apoptosis. He does bring up an intriguing point that cancer cells may actually have opioid receptors, which in my opinion could lead to new theories about cancer pain and possibly even treatment of cancer in general. Another report says that it took 30micromols of methadone per liter to kill the leukemia cells which would be toxic to humans. I have no clue what the equivalent oral dosage would be to get to 30micromols per liter. Any pharmacists in the house willing to help us out on that one? 3. Board Games and Palliative Care?
I like board games and so I visit boardgamegeek.com occasionally. (Yes that is the actual name of the site. As I have mentioned before, it is interesting how you find parallels to your work everywhere. A board gamer named Swashbucklin' Josh wrote a poem about his battle with Crohn's disease and how it stole his hope. Here is a small excerpt from the prose about his dialogue with his disease that could be any chronic and possibly fatal disease:

I said, "You must never come back."
He said, "I have left my mark upon you. I will return some day to claim what is mine."
I said, "But you have left me with nothing."
He said, "Until I come back, I leave my curse upon you. You will no longer hope for the future, for every day you will fear my return. I will be in your thoughts and in your dreams. I am already so much a part of you that you will not feel alive without me. In my absence, I will still be your master."

As the days went by, I felt strangely empty.
As the weeks went by, I began to seek him out so that I would once again feel alive.
As the months went by, I entered the pit of depression, and anger ruled me.
As the year past, I felt I was already dead and wanted to end it all.

If you like the arts & humanities side of our field, don't forget to check out Pallimed: Arts & Humanities. 
Saturday, August 23, 2008

Hospice in Prison vs. Hospice for Released Prisoners Multiple news organizations have recently highlighted the release of aging and terminally ill prisoners back into the community. Of course if you have very sick and possibly dying people coming into your community one of the services they may need is hospice. While in the prison system, the health care is paid for by the government, but once they leave the prison, they have to find their own coverage most likely through Medicare (if eligible), but of course there is a very good chance they may not ever get any coverage. The main focus of the news articles is the ballooning cost of health care for prisoners.

Many hospice agencies are likely to get at least a few referrals from recently released prisoners, which brings up many logistical issues about safety, potential charitable coverage for their care, addiction or diversion concerns, and possible complex family dynamics with the reintroduction of the person back into the family. These issues can come up in any hospice admission of course, but this unique situation may take some detailed care planning on the part of the hospice team.

Interestingly, few of the articles highlighted the role of prison hospice, which was featured in a excellent JAMA article last year. The focus on medical release for terminally ill patients was relegated to two paragraphs at the end of the article. The article cited a stat on average 8 of 18 annual requests are granted for release secondary to a terminal illness.

For our field, it can pose a major dilemma. Do we advocate for the well-being of our patient to possibly return home despite being a criminal who has not completed their given sentence? How do we compare our duty to the patient versus the societal justice and completion of the punishment accorded the prisoner? Should it matter what the offense is for?

Linder, J.F., Meyers, F.J. (2007). Palliative Care for Prison Inmates: "Don't Let Me Die in Prison". JAMA: The Journal of the American Medical Association, 298(8), 894-901. DOI: 10.1001/jama.298.8.894 (free access with JAMA registration)

Saturday, August 23, 2008 by Christian Sinclair ·

What Does It Mean to Have "No Evidence"


Drew is on vacation so I get to post on this open access article just published in the BioMed Central Palliative Care Online Journal. The article examines the uses for the Cochrane Reviews, a favorite of Drew and Tom. Since they have long lamented the general lack of clinical usefulness of the Cochrane Systematic Reviews in Palliative Care, I am thinking they should at least get an acknowledgment in the paper.

The authors looked at the 25 palliative care oriented Cochrane Systematic Reviews and found that they all looked at heterogeneous study designs, heterogeneous populations, heterogeneous outcomes, et cetera...et cetera. Therefore any clinical recommendations were weak or neutral. So what we are left with is the classic tired coda for any research paper or presentation. Say it along with me...

"More Research is Needed."
Overcoming Bias looks at how doctors may interpret what to do based on 'no evidence.' And as I once heard Richard Horton, Editor-in-Chief of the Lancet say, "It's not true unless it is published in an article." So now Drew and Tom have some official validation! Reference:Wee, B., Hadley, G., Derry, S. (2008). How useful are systematic reviews for informing palliative care practice? Survey of 25 Cochrane systematic reviews. BMC Palliative Care, 7(1), 13. DOI: 10.1186/1472-684X-7-13



Media Coverage of Terri Schiavo Neurology published a review of newspaper media coverage in the case of Terri Schiavo (subscription required), who had persistent vegetative state and died amid much public controversy over surrogate decision making in 2005. Dr. Eric Racine and his colleagues found 1,141 articles from the Washington Post, New York Times, and two papers from the Tampa-St. Petersburg area spanning 16 years (1990-2005). The focus of the study was to analyze the themes of the headlines, and the accuracy of medical terms and descriptions of Terri Schiavo's condition.

The study demonstrates a large mischaracterization of her neurologic condition that was not necessarily due to the refutation of the Schindler family and politicians. She was officially diagnosed as being in a persistent vegetative state, but journalists also used similar but inaccurate terms, such as 'brain destroyed', 'permanent vegetative state' and even 'brain death.' When looking at these alternate descriptions, it may not seem to be very different, but the difference between 'persistent' and 'permanent' is a pretty important distinction. Persistent describes the past and current situation and is part of a diagnosis. Permanent is really more future oriented and is best classified as prognostic information.

When describing the withdrawal of life support (artificial hydration and nutrition) is probably of most significance to the palliative medicine community. Some of the terms used include:

Less then 2% for each of the following

The palliative medicine bioethics and neurology communities really missed a large opportunity to do some education about withdrawal of life support measures. Obvious barriers to this opportunity were large including national and local political pressures and the possibility that vocally taking a side could alienate a large portion of the population. The authors noted very few articles actually focused on expert opinions or research about persistent vegetative state or the withdrawal of artificial hydration or nutrition. This may be something to push to local and national media when we encounter similar controversies.

Fostering good relationships with the press is essential for the medical community to help avoid erroneous descriptions of complex medical situations. Communicating accurate medical information to the public and helping the public understand complex medical decision making situations is vital to the continued trust in the medical profession. Maybe it would be good for our professional meetings to have a talk about 'Medicine and the Media' or possibly even some mock interview sessions to make sure we are confident and adequately prepared in the future.

If you have any tips on working with the media or would like to tell the AAHPM, HPNA, or NHPCO to have a 'Medicine and the Media' talk or workgroup feel free to email them or comment below. Racine, E., Amaram, R., Seidler, M., Karczewska, M., Illes, J. (2008). Media coverage of the persistent vegetative state and end-of-life decision-making. Neurology DOI: 10.1212/01.wnl.0000320507.64683.ee

Thursday, August 21, 2008 by Christian Sinclair · 1) Pain Control Prognosis
The recent July/August 2008 (not online yet) issue of Pain Medicine News had an interesting article focused on the prognostication of pain control. It is nice to see prognosis referring to other medical outcomes besides life and death. Unfortunately, only half the Q&A format focuses on that issue, while the end of the article highlights developments in the field of pain medicine.

A new term (to me) used in the article was 'rational polypharmacy.' I chuckled when I read that. I just hear in my head, 'Yeah, I know they are on a lot of different medicines. They need to be on each of them, so the interactions or cumulative side effects don't really matter.'

2)Headline 2050: Hospice No Longer Needed!
Looks like there is a non-profit organization looking to decrease the number of patients hospices may serve. Here is a snippet from the Methuselah Foundation's mission: The Methuselah Foundation is a non-profit 501c(3) organization committed to the acceleration of progress toward a cure for age-related disease, disability, suffering, and death. Apparently death from non-age-related diseases (i.e. cancer, congestive heart failure, etc) are not part of their focus. But I guess since they are trying to find a cure for suffering from age related diseases they may actually have a palliative focus, so we got that goin' for us, which is nice.

3)Behind Door #1
Dogs maul a cancer patient at home. Hey all you home hospice staff, please be careful hospice staff when entering a home. The potential subtle and overt threats you face by visiting people in their homes every day is often unappreciated. You have now been appreciated!

4)One Magic 8 Ball Please
I stumbled across this blog post from 2005 for 'prediction registries' to see if in any controversy who was right. There are billions of small and large predictions every day. Just think if the medical field started recording predictions and testing to see who is most accurate.

5)Gotta Love the Gershwin Brothers
For those astute readers who notice that Drew and I think differently about the letter 'L'...feel free to sing along:
Drew says Pall-pourri, and I say Pal-pourri;
Drew says Palliative Medicine Doctor, and I say Palliativist
To-may-to, To-mah-to
Po-tay-to, Po-tah-to
Let's take the extra 'L' off!

Feel free to debate in the comments which is more appropriate.




JCO issue on supportive and palliative cancer care Journal of Clinical Oncology recently devoted an entire issue to supportive and palliative cancer care (table of contents for the entire issue here). It is mostly a series of review articles about measuring and improving the quality of supportive/palliative & end of life care for cancer patients.

I wanted to highlight one paper in particular, about the use of aggressiveness of care at the end of life as a quality measure. This is an issue we've discussed before on the blog (most recently here). The current paper is written by some of the researchers who helped develop/define the concept in a research sense (i.e. how to measure 'aggressiveness' of care at the end of life - proportion of patients who initiate a new chemotherapy regimen within the last month of life, proportion of patients whose hospice lengths of stay are less than 3 days, those sorts of things) and the paper is a summary of their work and an overview of the field as a whole.

I was most interested in their discussion of the validity of these measures: are they actually reasonable quality measures? This is what they had to say:

To explore the validity of the measures, we sought to relate each of our measures to the outcome of family members’ satisfaction with quality of care near the end of life. We have examined data from a prospective cohort study looking at patient and family needs among women with hormone-refractory metastatic breast cancer treated at two Canadian regional cancer centers, and limited analysis to the patients who died during follow-up. Family members were asked to complete the FAMCARE instrument within 2 weeks of patient death. FAMCARE is a 20-question survey that asks about satisfaction with symptom control, psychosocial care, information provision, and availability of providers. Among 51 consecutive women who died and had a caregiver complete the FAMCARE instrument, there were trends toward less satisfaction with care when chemotherapy was continued within 14 days of death, death occurred in an acute care setting, or there was no or only a short ( 3 day) hospice involvement. These did not reach statistical significance, however, perhaps because of the small sample size. Interestingly, variability in scores appeared to be mostly driven by the "information giving" and "physical care" subscales of the FAMCARE instrument, suggesting that inadequate communication and symptom management may be associated with aggressive anticancer treatment. A larger validation study is underway in the National Cancer Institute–funded Cancer Care Outcomes Research and Surveillance (CanCORS) consortium comparing these measures with patient and family assessments of the overall quality of care patients with lung or colorectal cancer receive before death.

Well, I guess we'll look forward to the CanCORS results then. It of course seems intuitive that increased aggressiveness of care at the end of life for cancer patients is an indicator of 'poor' quality of care, but there are patients/families who would disagree with that, as well as some patients for whom treatment decisions to be 'aggressive' made sense/were appropriate at the time they were made despite the eventual 'poor outcome' and so defining the proportion of patients for whom aggressive care in the last month of life is inappropriate is going to be tough (10% emergency room visits in the last month good, 20% bad?).

Along these lines, death in an acute care setting is often proposed as a quality measure (increased hospital death implying worse care). One of the problems here is that rates of hospice use vary dramatically and at least partially by geography and hospice availability and I'm assuming that access to inpatient hospice facilities/hospice units is distributed unevenly as well. Given that, there are likely a certain number of dying patients for whom dying in the hospital is absolutely the best place to be (to get symptoms managed etc.). Higher rates of hospital deaths then may reflect more of a lack of access to hospice units (so it's a quality failure regarding equity in access to hospice care but not, for instance, a failure on the part of the patient's doctors/caregivers). In a general sense I'm sure higher rates of hospital deaths aren't a good thing, but the problem with quality measures is that once you create them people (e.g. Medicare, other payors, the JC, etc.) start using them (pay for performance etc.) with unintended consequences.

Anyway, it appears I began to ramble, and none of this is to suggest that this shouldn't be carefully investigated, and it's exciting to look at how people have operationalized this concept, and perhaps the CanCORS study will continue to clarify things.

Monday, August 18, 2008 by Drew Rosielle MD ·



Journal of Clinical Oncology has a lovely 'art of oncology' case discussion about arranging for a (slowly dying) young boy who was receiving hospice care to attend preschool - all the issues & challenges involved as well as the joy it brought.

BMJ has a brief editorial by Nicholas Christakis decrying how poorly we do as a society in taking care of the dying, and how lack of prognostication can make things worse.

Regional Anesthesia and Pain Medicine has a randomized, placebo-patch-controlled trial of the lidocaine patch for acute herpes zoster pain (not post-herpetic neuralgia for which it has previously been studied). It was a small study, and involved only 2 days of treatment with bid dosing of the lidocaine patch or placebo placed on non-blistered skin. Like with PHN, the patch showed a modest benefit in pain reduction over placebo.



Quality vs. quantity of life in CHF The Journal of Heart and Lung Transplantation has a fascinating article looking at treatment preferences in CHF patients. It involved a convenience sample of ~90 patients with CHF (either class II or IV) at a single Canadian center, who were given hypothetical scenarios about treatment options (essentially best medical management, longer life, lingering death; vs. oral inotropes, 4 months of improved symptoms, sudden death; vs. LVAD, improved symptoms and survival, lots of care burdens, lingering death). The basis of this seems to be several trials of oral inotropes which were stopped earlier because of increased mortality in the patients receiving oral inotropes. Despite the increased mortality, patients receiving the inotropes apparently had improved health related quality of life over those receiving best medical care, so the researchers here asked themselves, "Well, is that a reason to stop these trials - maybe some patients would prefer improved symptoms even if it meant decreased survival?" Thus, the current study.

The major findings can be summarized as 1) many patients were happy to take shortened survival if it meant improved symptoms and a non-lingering death and 2) treatment preferences didn't seem to correlate with current CHF severity, symptom severity, or health-related quality of life. While it goes without saying that the scenarios presented to patients were somewhat artificial, the important point here is that there were a substantial number of patients for whom longevity was not the preeminent concern.

This is of course not a surprise, but this paper is written directly at a cardiac research and clinical community and argues research in this population which assume survival benefit as the preeminent treatment outcome is short-sighted, and encourages further scrutiny of oral inotropes as palliative therapy for those patients with quality of life-predominant treatment goals. (Are there any agents currently available? None of the ones they mentioned are commercially available as far as I know. I remember encountering oral inotropes as a resident in research trials but don't know of anything available off the top of my head....)

The other intriguing thing here of course is that preferences didn't seem to be related to current health status or symptoms (the authors had hypothesized that those with the current worse symptoms would be more inclined to receive life-shortening but symptom alleviating treatments). The study wasn't specifically powered to find such a relationship as far as I can tell, however if it exists it is probably not a very powerful interaction. Values may be the more powerful predictor of treatment preferences here.

Friday, August 15, 2008 by Drew Rosielle MD ·

Caring and tube-feeding


The Journal of the American Medical Directors Association has a paper discussing tube feeding in advanced dementia, and why the practice still continues despite lack of evidence that it is medically helpful. The discussion is really about the nature of caring, what it means for families to care for a beloved family member with dementia, and how tube feeding interacts with that. This is one of the best discussions of the emotional landscape of the issue that I've read, and the crux of their argument is as follows:

But perhaps one overlooked reason that many loving families and caring physicians continue to opt for artificial nutrition is that the case for feeding tubes is a moral one and not a scientific one. Clinical experience suggests that family members who express concern about “starving” their relatives to death may not be asking for more data. They may not be interested in the relative merits of randomized versus observational studies. They are unlikely to be persuaded by claims that feeding tubes not only fail to prolong life but also are ineffective in preventing aspiration pneumonia or pressure ulcers. These medical outcomes, which can be scientifically measured, are of interest to physicians; it is not at all clear that they are important to families. From this perspective, families will derive little reassurance from a new, better designed study or a multipronged intervention that simultaneously addresses each of the factors that has a small but statistically significant effect on PEG usage. What may be at issue for families is how best to demonstrate caring, and caring is not readily amenable to empirical study.

Another great line: "Moreover, if a carefully conducted study definitively demonstrated that hugging has no effect on the immune system, no daughter would stop hugging her demented mother."

This reality, of course, does not provide a 'way out,' and the authors suggest the only ways out would be well-designed studies showing harm from tube feeding patients with severe dementia and dysphagia and/or poor oral intake, or another way of showing caring with nutrition (they mention Ensure lollipops - I wasn't sure if this was some sort of joke but I'm assuming it wasn't - does anyone know of work being done on such a thing?). Diligent hand-feeding is of course perfectly within the framework of 'caring with nutrition' here, and the authors discuss that as well as some of the barriers to that being used/proposed more.


BMJ series on qualitative research


BMJ has a series of articles about reading, understanding, and appraising qualitative research - a good set for the teaching file. BMJ has a complex online <-> print publishing system which I don't exactly understand and I can't exactly tell which issue these are from (the were all grouped together in a recent table of contents announcement from BMJ) - so here are the individual articles:

Articles 1, 2, and 6 will likely be of most interest to readers of the blog and their trainees. Grounded theory comes up a lot in palliative care research, and I was hoping #2 would be illuminating, but is unfortunately a relatively brief introduction to it. Does anyone have a good overview of grounded theory research and how to interpret it (one that's written for clinicians, and not researchers, social scientists, etc.)?



Alterations of content of family meetings by medical interpreters Chest has a fascinating paper looking at how content can get changed by interpreters during family conferences. The data comes from an analysis of transcripts of ICU family conferences in which the family didn't speak English and a certified medical interpreter was used (the study took place in two Washington state hospitals and the interpreters were certified via a Washington state certification process). (All this comes from a larger study which involved tape recording ICU family conferences in which end of life issues/decisions were likely to be addressed - this is a subanalysis of 10 conferences in which an interpreter was used.) Essentially they hired certified medical interpreters (who weren't involved in the study and who didn't know the interpreters involved in the study conferences) to transcribe and translate into English the non-English portion of the tape recorded conferences. What the family 'actually' said was then compared with what the interpreters translated in the conference and vice versa for what the clinicians said. There was some quality control to check the accuracy of the hired interpreters.

They then schematized 'alterations' in content into omissions, additions, and substitutions, or editorializations, and further categorized these into positive or negative alterations in several categories (e.g. medical information - interpreter decreases certainty of prognosis vs. increases certainty of prognosis, interpreter makes an implicit prognosis more explicit or makes an explicit prognosis more implicit; emotional content - interpeter omits emotional language, makes harsh sounding clinician statements softer, etc.).

Major findings are as follows: alterations were common, in over 50% of translated statements. Most were editorializations (which they defined as an interpreted passage which combined at least two of either an omission, addition, or substitution) or omissions. 77% of these were judged to be 'potentially significant' alterations (which could affect the goals of the conference such as sharing accurate medical information, building rapport, eliciting patient values, establishing treatment goals, etc.) and almost all of these were judged to be negative - interfering with those goals. They note that an average of 16 alterations which could affect treatment decisions occurred each conference.

Yikes. Before you flip out, which is what I did when I read the abstract, it's helpful to see examples they gave of these - some are drastic and some are more subtle and (especially given the small sample size and relatively preliminary and potentially subjective nature of the interpretation of these alterations) one shouldn't make too much stock in those numbers. Saying that doesn't take away of course from the overall finding of the study: real-life interpretation is fraught with hazards, even with professional interpreters, and when there seems to be protracted conflict, lack of understanding, or that little voice in your head saying 'boy I don't think they're getting it' or 'something's wrong here' - consider problems in interpretation.

Anyway: the examples they gave ranged from just flat out 'wrong' interpretation to changes in emphasis which remove opportunities to build rapport, establish treatment goals, etc. .

Doctor: I don’t know. Um, this is a very rapidly progressing cancer. Interpreter (translating): He doesn’t know because it starts gradually.

Doctor: Have you spoken to your husband about these kinds of questions before he got sick, what his wishes might be in this sort of situation? Interpreter (translating): Did you talk to your husband before he got so sick about possible situations, what was awaiting him?

The authors recommend:

First, preconference meetings with interpreters might provide an opportunity to address some of the causes of alterations. These meetings might include a discussion of which interpretation approach would be most appropriate (eg, strict linguistic translations or a "cultural broker" approach), and might provide an opportunity to clarify the topics to be discussed and the terminology that will be used. Second, by speaking slowly and using short sentences, clinicians can prevent a situation in which the interpreter has to remember large blocks of information, thereby reducing the chance the interpreter will make alterations and particularly omissions. Finally, physicians should repeat important concepts and ask the family members if they have questions about those concepts to make sure key data are accurately conveyed to the family.

Monday, August 11, 2008 by Drew Rosielle MD ·

Prognosis in lung transplant patients with chronic rejection


The American Journal of Critical Care has a study about the natural history of chronic rejection after lung transplantation, which they state is the primary cause of death in lung transplant patients after the 1st year post-transplant. This study is a single-institution case series which presents the natural history of the 60 patients (out of 300 total transplants) who developed chronic rejection over an 8 year period. 26 patients died during the time of data collection. Median survival or time to re-transplant was 31 months after the onset of chronic rejection. Yes that's not a particularly helpful figure, but given the reality that some of these patients can be 'saved' with re-transplantation, and thus the natural history of chronic rejection depends heavily on the availability and success of re-transplantion, that's the best info we have....

They had only sparse data on the circumstances of death for the patients who died: it appears most of them died in the ICU, and they note that end-of-life discussions were initiated by family members most of the time (at least for those patients on whom they had data). Overall a picture is painted of a very sick population who spend a tremendous amount of time in the hospital, and receive very intensive care right up to the point of death.


Review of heroin dependence


JAMA has a Clinician's Corner review on heroin dependence. It's a chatty, narrative review which covers the history of heroin abuse in the US, its epidemiology, the history of and research supporting methadone therapy, buprenorphine and naltrexone treatment, as well as a Q&A at the end which addresses some of the language used:

When I was on the American Psychiatric Association DSM III-R...committee, the problem that we had when we were designing a diagnostic classification scheme was that we were trying to come up with a scheme that applied to all drugs of abuse. So that meant nicotine, alcohol, cocaine, heroin, and so forth. People who work primarily with alcoholics don't like to use the word "addiction" regarding alcohol. But it absolutely fits. All of the drugs of abuse activate the reward system, but through different mechanisms. The reward activation produces learning, which results in long-term behavioral effects that increase the probability of relapse. The major problem with terminology is the tendency to stigmatize. However, as more public figures have admitted to addiction problems, we see that it can happen to anyone. I think it is better if addiction is dealt with as an illness instead of as something that implies bad character. Addiction is just another medical problem. I think the stigma is a holdover from the time when addiction was thought of as weakness of will or bad character or criminal activity. Addiction is a chronic disease of the brain with strong heredity components, and it ought to be approached as a medical illness.



Palliative Care as the Focus of a Medicare Revolution?

Thursday, August 7, 2008 by Christian Sinclair ·

Pallimed on Facebook: A Non-Stop Party!


For those of you familiar with Facebook, a new group has been created for readers of any of the Pallimed blogs. Drew, Amy and I are on there in addition to a small group of other readers who surprisingly found us without us promoting it. So if you are already on Facebook feel free to look up 'Pallimed' in the Groups section. Please don't join Facebook just for this group as there will not be new content exclusive to Facebook, but it will serve as a general place for discussion about Pallimed issues if you are interested. It may also serve as a palliative care network that blogs don't necessarily support. So if you want to find other palliative care-oriented people head on over.

Of course you can still leave us a comment on any post or email if you want.


Medical Futilty: Excellent Ethics & Law Blog


While perusing some of the links back to Pallimed from other sites, I stumbled across an excellent blog by a law professor, Thaddeus Pope. The blog, Medical Futility, has frequent posts relevant to the palliative care community as the mission is to cover judicial, legislative, policy, and academic developments concerning medical futility.

Here is a taste of some of the posts:

DNAR as Default Status: Desirable in Principle, Difficult in Practice

USA Becoming Less Death-Defying?

The Slow Code

He even posts the classic dark humor clip from Monty Python about the coroner during the plague from MP & THG.

The posts are typically short and contain a lot of clipped material. It is hard to get much of his take on issues, but he poses many questions to the readers. There have not been a ton of comments yet, but get over and check out some of his posts and you may find that you have something to say.



Aggressiveness of end of life care in lung cancer Cancer has e-pub'd a study looking at the aggressiveness of care in patients dying of non-small cell lung cancer. The data come from a prospective study looking at early specialist palliative care involvement for patients newly diagnosed with advanced (stage IIIb or IV) NSCLC - essentially a 'concurrent care' model in which patients received specialist palliative care alongside routine cancer care/therapy (see here). This study looks at data for 46 patients (mean age 66 years; 100% white) accrued at one of the sites (Massachusettes General Hospital) and examines factors associated with aggressiveness of care (use of anti-neoplastic therapy, emergency department visits, hospitalizations, hospice use, place of death, etc.). The primary framework was looking at elements of care in the last 30 days of life for the 40/46 patients who died during the study - it's kind of like a mortality follow-back design although the patients were enrolled and followed prospectively.

The findings generally support the impression of aggressive care in the final days of life: 40% received antineoplastic treatment within 30 days of dying (nearly a quarter within 14 days of dying), and ~50% visited the ED and/or had a hospital admission. 62% died in a hospice setting, although with a mean of only 16 days. One-third of patients spent less than a week in hospice before death; one-third however spent more than a month. Interestingly, in bivariate analysis of predictors of 'aggressive' care elevated baseline anxiety or depression symptoms predicted increased likelihood of anticancer treatment within 14 days of death. They don't mention whether they evaluated for a 'treatment effect' of individual oncologists (i.e. distinct variations in care based on who the oncologist was - such an effect has been observed for aggressiveness of care for dying patients in ICUs - given the intimacy of this study this may not have been an easy thing to do politically, or may just have been outside the scope of this analysis).

The discussion at the end of the paper highlights the many, many unanswered questions this study raises, as well as generally cautions against throwing up of arms in the air about this. The big question (at least from a patient-centered perspective) of course is does this seemingly high rate of aggressive care reflect 'bad care' or 'less than ideal care'? On its face it seems that it does, but I'm not convinced that that's necessarily true; if all these patients at the beginning of their last month of life had been told that it was 'highly likely' that they would die in the next 1-2 months (regardless of what care they received), were given all the available options and services (hospice, other types of home care, ongoing anticancer treatment, supportive-only treatment, etc. etc.) - would these outcomes have been any different? We really don't know, and even if they outcomes would be different it's not like the levels of hospitalization/ED visits would go to zero (sometimes the best place for people, even very sick dying people, is the hospital). In addition, chemotherapy (oral or IV) does benefit quality of life in NSCLC (for some patients) - something which the authors address in the paper's discussion - and unless one is really darn sure someone has less than 30 days to live a decision to continue that treatment is not necessarily a bad one, although it eliminates a patient's access to otherwise indicated hospice services.

Reflecting on my own experience, I think there are major barriers to good end of life care on both ends (doctors aren't having realistic conversations and advising about appropriate care plans in light of a poor prognosis until way too late; the way US hospice services are set up creates barriers to access except for patients in the final days/few weeks of life due to restrictions [real or imagined] on anticancer treatments, emergency room visits, etc.). Temel, J.S., McCannon, J., Greer, J.A., Jackson, V.A., Ostler, P., Pirl, W.F., Lynch, T.J., Billings, J.A. (2008). Aggressiveness of care in a prospective cohort of patients with advanced NSCLC. Cancer DOI: 10.1002/cncr.23620

Monday, August 4, 2008 by Drew Rosielle MD ·

'Averages are dangerous statistics' Continuing a theme from the above Cancer article, BMJ has a study looking at oncologists' disclosure of the survival benefit of 'palliative'** chemotherapy. This is a small (37 patients, 9 oncologists), single-center (Bristol, UK), qualitative study which involved audio recordings of patients' initial meetings with an oncologist to discuss treatment options after a diagnosis of either advanced non-small cell lung cancer, pancreatic cancer, or colorectal cancer. These conversations were also personally attended by a research assistant who sat (silently) in the room: this person had already met the patient and received permission to be there, etc. The conversations were analyzed via a grounded theory approach.

The researchers describe that the incurable nature of the cancer was nearly always explained, however solid information about survival benefit of treatment was not. They summarize their findings here:

This ranged from giving numerical data, such as "about four weeks"; through an idea of timescales, such as "a few months extra"; to vague references, including "buy you some time"; to not being mentioned at all. During the recorded consultations, only six of the 37 patients were given numerical data about the survival benefit of treatment. These included three of the 23 patients who accepted palliative chemotherapy. In most consultations (26/37) the discussion of survival benefit was either vague or non-existent.

This is in contrast to the patients receiving detailed information about side effects and risks of treatment. The remainder of the paper is a fascinating look into these real conversations - with direct transcripts of excerpts of many of them along with a great discussion about aspects of these conversations: patient/family members blocking of prognostic information, how oncologists responded to direct questioning about survival benefit, the distinction between discussing overall prognosis and just survival benefit from chemo, etc. It's a good one for the teaching file - to look at real-life language and how it's used in these situations. I thought this exchange was notable:

Patient’s wife: You’re going to fight it. You said you would.
Patient 315: Yeah but it doesn’t mean to say it’s only going to be nine months I mean it might be 12, it might be 15, it might be.
Oncologist 103: Averages are dangerous statistics.
Patient 315: Yeah, you never know. I said to you before I’d sooner have a short amount of time with a bit of bonus to it, a bit of benefit. If I had to go into hospital for five weeks every day and, and not benefit from it and even catch something worse and end up back in hospital for the rest of me life basically, then I’d have to top myself.

Chemotherapy was offered and refused; the patient died three months later.

There's a supporting editorial here.

**We've griped on the blog before about how it's confusing to use the term 'palliative' to refer to non-curative but yet disease-modifying (life-prolonging) chemotherapy, but this is the language used in the paper. Along these lines, the same BMJ has a case-report detailing confusion about what level of care was appropriate for a patient - confusion seemingly based in the fact that the patient was labeled as a 'palliative care patient.' In this case the palliative care team advocated for more aggressive life-prolonging/restorative care than was initially considered 'appropriate.' This is a situation I find myself in from time to time - and it was nice to see this discussed in a prominent journal. My clinical team tries to keep on our radar other clinicians' reactions to our involvement as at times people can incorrectly assume we're there because a patient is imminently dying, or that their care goals are 'palliative-only.'



Predicting in-hospital mortality from CHF Journal of the American College of Cardiology has a look at predictors of in-hospital mortality for patients hospitalized with heart failure. The study uses data from the OPTIMIZE-HF registry which was a large, US-based quality improvement study/program (i.e. getting patients hospitalized with CHF on more evidence-based therapies, discharged on beta-blockers, etc. - see here) involving 259 hospitals (both academic and community) and 48,000 patients (mean age 73 years, both patients with systolic dysfunction and preserved systolic function were included). The database included ~50 variables: demographics, comorbidities, laboratory (hemoglobin, serum Na, etc.), drug categories (on diuretics, digoxin, etc.), and things like weight, vital signs, etc. In-hospital mortality was 3.8% (about 1800 patients) for the entire cohort.

Using the database, they derived a multivariate prediction model of in-hospital mortality which contained 18 variables. The strongest univarite predictors were serum creatinine (in-hospital mortality increased by 18% for every 0.3mg/dl increase in creatinine), age, and blood pressure (higher being more protective).

They then derived a relatively simple point-system based on the factors which most powerfully predicted mortality (the above 3 plus heart rate, serum sodium, presence or absence of systolic dysfunction, and whether or not CHF was the primary reason for hospitalization) and created a mortality risk nomogram based on that point system (available here - click on the prediction nomogram pdf). (Of note, the model only included patients with complete data so this was based on ~40,000 patients/~1300 deaths.) The model was validated with a within-cohort sample, as well as with data from other large CHF registries, with pretty good results (C-statistics greater than 0.7). As an example, an 85 year old with a pulse of 110, systolic BP of 90, serum Na of 120, serum creatinine of 2.5, and systolic dysfunction would have a ~40% chance of in-hospital mortality based on this model.

To rephrase that, of 100 patients presenting with those characteristics, about 40% would die each hospitalization. I rephrased that to highlight the obvious limits of such models - they can tell us really accurately what will happen to a population of patients but are really limited in telling us what will happen to the patient in front of us. One further caveat about these models is that since it comes from a large QI study there is reason to think that this may overestimate prognosis - patients are likely to do worse outside of such an environment (this is one of the reasons it is helpful to have it validated in outside cohorts, which was done, all of which however were large study registries....). Despite that, they can be used as clinical 'data points' (one of many) in helping us to counsel patients/families as to what to expect. More than this though these are best used as screening tools to identify patients/families with 'acute' palliative care needs (psychosocial/family assessment, prognostic and goals of care conversations, advance care planning, symptom assessment, etc.).

HT to Bob Arnold. ABRAHAM, W., FONAROW, G., ALBERT, N., STOUGH, W., GHEORGHIADE, M., GREENBERG, B., OCONNOR, C., SUN, J., YANCY, C., YOUNG, J. (2008). Predictors of In-Hospital Mortality in Patients Hospitalized for Heart FailureInsights From the Organized Program to Initiate Lifesaving Treatment in Hospitalized Patients With Heart Failure (OPTIMIZE-HF). Journal of the American College of Cardiology, 52(5), 347-356. DOI: 10.1016/j.jacc.2008.04.028

Friday, August 1, 2008 by Drew Rosielle MD ·

Review of psychological adjustment to chronic illness


Lancet has a narrative review about the psychological adjustment to chronic disease. It covers everything from inflammatory cytokines (they're everywhere), functional status, positive/helpful coping, potential long-term psychological benefits of adjusting to a chronic illness, and more. It's mostly useful as an overview of the topic, with a huge reference list, and would be a good starting point for people looking to do more in-depth review of the topic (teaching file!). I found this discussion interesting:

Prospective studies examining which types of emotion regulation affect adjustment show that, at least in the North American and western European cultures, the regular use of avoidant non-expressive styles of emotion regulation is disadvantageous for psychological adjustment and survival. In less emotionally expressive Asian cultures, non-expressive emotion regulation styles have proven advantageous, suggesting that the congruence between one's general style to handle emotions and the style advocated in one's cultural system determines whether the emotion regulation style is adaptive or maladaptive. Acknowledgment and intense experience of emotions are suggested to be beneficial for adjustment as long as those emotions are expressed and processed; the mere uncontrolled expression of emotions without processing can be maladaptive....


Doctor-patient relationship in NYT


The NY Times had a piece this week briefly looking at the troubled doctor-patient relationship, and how it appears to be deteriorating. Insurance, the internet, lack of time are all implicated. As is this:

Dr. David H. Newman, an emergency room physician at St. Luke's-Roosevelt Hospital Center in Manhattan, says there is a disconnect between the way doctors and patients view medicine. Doctors are trained to diagnose disease and treat it, he said, while “patients are interested in being tended to and being listened to and being well.”

HT to Dr. Paul McIntyre.

