Thursday, October 30, 2008

Changes in treatment preferences over time

Archives of Internal Medicine has a study looking at the stability of treatment preferences for end-of-life care over time.  The data comes from the Johns Hopkins Precursors Study - a decades long longitudinal look of thousands of physicians (originally designed to to look into cardiovascular disease).  This analysis looks at how answers to questions about life-prolonging treatments change over time (this is all based on answers to a single scenario asking about respondents' wishes if they had irreversible brain damage and couldn't communicate or recognize people).  
The study compares answers 3 years apart (involving ~700 physicians each time; mean age at baseline 69 years; and reflecting that this was a study initiated in the 1950s in medical schools the subjects were 92% white men).   They divided responses into 'most aggressive' preferences, 'intermediate' preferences (essentially would take IV fluids and antibiotics but nothing else), and 'least aggressive' (essentially would want no life-prolonging medical therapies).  What they found is that treatment preferences were relatively stable over time, however:  those originally who were in the most aggressive category were most likely to change (only 41% remained there after 3 years); and the least aggresive subjects were most likely to stay the same (80% did; 6% changed to most aggressive).  

Age and comorbidity didn't seem to influence things much however physicians without advance directives at baseline were much more likely to move into the most aggressive category than into the least aggressive category.  

I am not sure how generalizable these preferences are given that these were older white physicians and is based on a single scenario (a relatively uncommon one at that but one that tends to provoke strong responses) however it's illustrative of how a substantial minority of patients (whatever the exact numbers) change their preferences over time.  I guess it's 'reassuring' that most people change their preferences to less aggressive measures, however as I read this I became very interested in that 20% of the 'least aggressives' who over the course of 3 years changed into the intermediate or most aggressive categories.  

What happened there, what was driving that, etc. is something I'd love to know but is certainly unanswerable with this type of study....

Also from Archives:  the previous issue has a study looking at the effect of a dementia diagnosis on cancer survival.  It's an analysis of data from the SEER database, looks at tens of thousands of older patients, and has a few notable findings.  First 5-10% of patients newly diagnosed with prostate, breast, or colon cancer have preexisting dementia.  Patients with dementia were diagnosed at a later stage in general and had significantly worse mortality (both overall, non-cancer and cancer-related mortality).  These differences persisted after controlling for things like age and other comorbidities.  Gross 6 month mortality rates were as follows (with and without dementia):  25% vs 5% for breast, 45% vs 20% for colon, and 29% vs 4% for prostate.  It looks like some, but not all, of the 'excess' mortality was from non-cancer diseases.  One assumes that the population of patients with comorbid dementia and cancer will grow rapidly in the coming decades and, as treatment toxicities diminish (with 'targeted therapy' which, although at times less toxic than cytotoxic chemotherapy, had not been a magic bullet for cancer treatment), there will be ongoing challenges for us in the profession in helping these patients/families make decisions about cancer treatment and balancing time gained with toxicity and treatment burdens.

Thursday, October 30, 2008 by Drew Rosielle MD ·

Focused ultrasound for bone mets

Radiology has a small case series about using MRI-guided focused ultrasound to treat painful bone metastases.  It works exactly how it sounds.  It requires conscious sedation and was done on an outpatient/same-day basis.  This study is a small case series (n=11) of patients with persistently painful bone mets who had failed routine treatments, including external beam radiotherapy.  Average pain decreased from ~6/10 at baseline to ~4/10 at day 2 and 2/10 two weeks out.  Of course this is an uncontrolled case series and patients were presumably being treated with other modalities.  


The authors note that the mechanism of analgesia with this is unclear but people speculate it's due to destruction of periosteal innervation.  That said, they heated the tumors up to 65 degrees celsius and noted many patients had obvious necrosis on MRI afterwards so presumably there is an analgesic effect from tumor control as well.  The potential advantages of this over other ablative procedures (e.g. cryoablation, radiofrequency ablation) is that it's non-invasive.  One hopes larger/controlled trials are in the works.  While I have access to cryo and RFA for my patients, this is not yet available at my institution:  anyone have any experience with this?

by Drew Rosielle MD ·

Monday, October 27, 2008

'Stuttered' treatment withdrawal in the ICU

American Journal of Respiratory and Critical Care Medicine has a paper looking at the duration of life-support withdrawal and family satisfaction.  The data come from a multicenter trial in Washington State which looked at various aspects of end-of-life care in the ICU.  This analysis looks at ~584 family member surveys of patients who died after some withdrawal of life-sustaining therapies (WLST):  patients died in an ICU or within 24 hours of transfer out.  (There were 2000 ICU deaths in the study period, and only 820 family surveys com
pleted, and then a couple hundred exclusions based on incomplete data and deaths occuring without WLST.)  LSTs here were defined as laboratory testing (?), mechanical ventilation, renal replacement therapy, tube feeds, vasopressors, and IV hydration.  (Why lab testing and not antibiotics I'm not sure.)  

Mean patient age was 72 years, 90% white, mean hospital length of stay was 6 days, 82% were ventilated at some point, and ~50% received vasopressors.  The paper has tons of data in it, both simply descriptive about what happened to who when, as well as some analysis looking at patient characteristics which predicted all-at-once or 'stuttered' WLST and family satisfaction.

The key findings were that for about half the patients LSTs were withdrawn sequentially over time (greater than a day) - the other half had all LSTs stopped the same day.  Across the cohort, ventilation tended to be withdrawn last (a little over 1 day prior to death), with other therapies withdrawn sooner.  Renal replacement therapy was stopped more than two days, on average, before death (although only 10% of the subjects ever received RRT).  The longer a patient was in the ICU, as well as the more LSTs they were receiving, the more stuttered the WLST was (youth, non-cancer diagnoses particuarly trauma, and more family members involved in decision making also predicted a more stuttered WLST process).  

Family satisfaction was interesting.  The shorter a patient's overall ICU stay was (less then 3 days), stuttered WLST was associated with worse family satisfaction.  For longer ICU stays, stuttered WLST was associated with better family satisfaction.  Intubation in the last week of life was not associated with family satisfaction (either way), however, for intubated patients, being extubated before death was strongly associated with family satisfaction.  The use of non-invasive postitive pressure ventilation (ie 'bipap') was negatively (although not statistically significantly) associated with satisfaction.  

There are many caveats with interpreting all this, not least being selection bias given the low response rate to the family survey.  That said, these seem to be supporting data that stuttered WLST - something I imagine that those of you who see patients in the ICU see done all the time - is common and not necessarily a bad thing for many families.  The authors state their original hypothesis was that stuttered WLST would be associated with worse family satisfaction and generate some hypotheses as to why they were wrong.  The one most consistent with my own observations is that the process of limiting and withdrawing potentially LST in ICU patients expected to die is often a days' (or weeks') long process, which evolves with the patients' changing clinical course and response to therapy, and while the vast majority of times families agree with withdrawal of some/many/all LST before a patient dies, many require/benefit from time (at least days) to accomodate a patient's changing condition/terrible prognosis and to make decisions accordingly even if the physicians lead-off with straight-forward recommendations for WLST.  The observation that increasing number of family decision makers 'prolongs' things seems to support this reality....  

ResearchBlogging.org
E. Gerstel, R. A. Engelberg, T. Koepsell, J. R. Curtis (2008). Duration of Withdrawal of Life Support in the Intensive Care Unit and Association with Family Satisfaction American Journal of Respiratory and Critical Care Medicine, 178 (8), 798-804 DOI: 10.1164/rccm.200711-1617OC

Monday, October 27, 2008 by Drew Rosielle MD ·

Review of hope & prognosis

Psycho-Oncology recently had a review article looking at sustaining hope when discussing prognosis with terminally ill patients (it came out in July although I just came across it now).   This is a great one for the teaching file - particularly for fellows - and summarizes the patient populations, methods, and major outcomes of all the studies which met the inclusion criteria (essentially any study of patients, caregivers, or health professionals, which involved poor prognosis populations - less than 2 years for the purpose of this review - which looks at the interaction between hope and communication surrounding prognosis/the future).  The studies were predominantly in English-speaking countries.  


If you're looking for dramatic revelations about this there are none here, although the paper's girth underlies the breadth of research in this topic which consistently has shown:  a majority of patients want accurate and realistic prognoses, most identify it as an important topic to discuss, and most terminally ill patients conceive of hope in more ways than just hope for a cure.  Of course that leaves us with an important minority of patients (a few percent to one-third depending on the study) who don't endorse any of that.  

by Drew Rosielle MD ·

Prognosis in early-onset ALS

Neurology has a paper which gives some very general prognostic guidance regarding survival in early-onset ALS.   The study (based on a single Italian institution's 20 year experience) compares the natural history of 57 patients diagnosed with ALS before the age of 40 with 450 older patients. 


Overall median survival was 48 months:  44 in older patients and 71 months in younger patients.  Younger patients with upper-motor neuron predominant symptoms did better than those with lower-motor neuron predominant symptoms (56 vs 74 months).  No patients with LMN-predominant symptoms lived longer than 10 years.

by Drew Rosielle MD ·

HPM Business: Boards, The Board, CMS

A busy couple weeks from a professional standpoint here in the US:


1)  
The first, 'official,' American Board of Medical Specialties sponsored Hospice and Palliative Medicine board exam is this Wednesday.  I collectively wish all of you taking it good luck - wish us the same.  For those of you freaking out about the pediatric content I'll let you know I read the HPM Fast Peds module and have this to say:  'baclofen' and any answer in which supports the principle 'sick kids are kids first and patients second' is correct.  

2)
I hope I will be forgiven for noting that my friend, colleague, fellow blogger & prognosis-completist,  and Pallimed design-guru and webmaster, Dr. Christian Sinclair, is running to be a director-at-large for the AAHPM Board.   AAHPM members should have received the ballot by now (link to candidate profiles here).  Christian - if you'd like to make any comments about why you're running please feel free to.  Readers - feel free to ask any questions too.

3)
The Centers for Medicaid and Medicare Services has officially recognized HPM as a medical subspecialty.  This should make it easier for HPM docs to receive reimbursement for our services.  We'll see.  Regardless - another happy milestone on for the profession.  AAHPM press release here.  

by Drew Rosielle MD ·

Thursday, October 23, 2008

Mag Citrate #4: PAS, HCC, Thoractomies, More

It continues.  Actually this is, I hope, the end of the Mag Citrates for now.

1)

BMJ has a paper looking at depression and anxiety symptoms  in patients requesting physicians' aid in dying (ie - physician assisted suicide)  in Oregon.  The study involved diagnostic interviews with 40 Oregonians who were at least seriously considering obtaining a lethal prescription via the Oregon Death With Dignity Act process.  It's a small number of patients in one sense, however given the number of actual DWDA deaths in Oregon it's an OK N.  That said, the recruitment for the study involved referrals from a DWDA patient advocacy organization as well as referrals from practitioners who met patients expressing interest in a lethal prescription, so it's really impossible to know how representative these 40 subjects were of those actually considering lethal prescriptions in Oregon.  They compared patients who actually went through with obtaining a lethal prescription with those who didn't and found, interestingly, that those who obtained that prescription differed little from those who didn't except that they reportedless desire to die and less hopelessness.  Given the likely selection bias here I wouldn't make too much that this.  

They also found that only 3/15 patients who actually obtained a lethal prescription met criteria for depression.  I say 'only' there but the authors point out that the DWDA states that physicians 'must ensure' that patients are seen by a psychiatrist if they are concerned they have a mental illness including depression that may impair their decision making. It looks as if only one of those patients received psychiatric help and the authors conclude that the safe-guards in the DWDA protecting those with mental illnesses aren't necessarily followed.  

Accompanying editorial about the feasibility of screening for depression in all patients investigating assisted death is here.  

2)
Cancer has a paper presenting a prognostic scoring system for hepatocellular carcinoma not amenable to locoregional therapy (e.g. including resection, transplant, or chemoembolization).  The score predicts likelihood of death within 3 months.  The data come from a single institution's (Hong Kong) prospective database of all HCC referrals (about 1400 patients - they used 1100 for the derivation set and 300 for the validation set) - these subjects had a median survival of 2.3 months overall.  The prognostic index they developed uses relatively easily obtainable data (mostly routine lab tests including AFP, LFTs; data most patients would have based on routine imaging - tumor size, presence of ascites), but is only moderately predictive, and I'm not sure if this is going to add much to presently available tools and clinical acumen.  The authors, reasonably, propose using it as a way to identify better-prognosis patients for clilnical trials.

3)  
Clinical Journal of Pain has some general epidemiologic data about chronic post-thoracotomy pain (something not uncommon in many lung cancer patients).  The data come from a trial of ~120 patients who received epidural analgesia at the time of major thoracotomy; this analysis looks at the 48 week follow-up.  At 48 weeks 20% of patients continued to report any thoracotomy pain (mean ~3.3/10).  They don't present data about what number of these patients had moderate to severe pain, although 44% of them were using opioids at week 48.  A couple other observations:  1)  20% is lower than in other trials suggesting (at least compared to historical controls for what that's worth) epidural analgesia perhaps does help prevent long term pain, and 2) there was a clear division around week 12 between patients whose pain were dropping off and those whose pain persisted suggesting that's a reasonable cut-off to identify patients at high-risk for long-term pain post-thoracotomy.  

4)
Supportive Care in Cancer has a review on decision-making in cancer which focuses extensively on how decision-making changes over time and changes with quality of life, prognosis perception, and prior response to treatment.  It's pretty theoretical but a great literature review and a good one for the teaching file particularly for more advanced learners (e.g. fellows).  

5)
Mayo Clinc Proceedings  has a couple: 

One is a review of peripherally acting opioid antagonists which discusses both methylnaltrexone and alvimopam at length, at focuses heavily on physiology as well as emerging/yet-to-be-properly-investigated uses of those agents (opioid induced urinary retention, nausea, pruritis, etc.).  

The other is a survey of physicians at a single institution (all within the Department of Medicine)  looking at beliefs about and attitudes towards discontinuing implantable cardioverter-defibrillators in patients nearing the end of life.  Sobering stuff: despite there only being a 43% response rate, nearly 50% of respondents thought it was illegal (or at least were concerned it was illegal).  That could still translate to nearly 25% of physicians.  Yikes.  Cardiologists, as opposed to other internists, all knew it was legal.  

Thursday, October 23, 2008 by Drew Rosielle MD ·

Mag Citrate #3: JCO Edition - Cancer & Suicide, More

This is the Journal of Clinical Oncology iteration of Magnesium Citrate.  


1)  
There are 3 rearch papers on suicide in cancer patients - more or less defining the problem with contemporary data:  two on suicide rates (approximately double the general population) - hereand here, and one on suicidal thoughts (point prevalence about 8%).   If you were going to read one thing however I'd read the fantastic accompanying editorial which summarizes the papers and further defines the issues involved.

2)
There are some personal reflections from someone who blogged about his wife's terminal illness which discusses the power of personal blogging, as well as some of the drawbacks.  

3)
A large meta-analysis looking at trials comparing chemotherapy (any chemotherapy) with supportive-care alone for advanced non-small cell lung cancer confirms that it has a 1) real, and 2) modest survival benefits (median survival improves by 1.5 months to 6 months overall; 1 year survival increases from 20 to 29%).   The analysis does not look at QOL.  

4)
A survey of academic pediatric oncology centers found that only about 60% of them had access to pediatric palliative care and hospice services.  

5)
There's a trial of a collaborative case management program to treat depression in cancer patients.  This involved a structured care model including MSW therapists, psychiatrists, and care navigators and involved cancer outpatients with expected prognoses greater than 6 months.  It seemed to be pretty successful and is particularly notable for targeting a largely poor Hispanic population - a traditionally understudied population particularly with regard to supportive cancer services.

6)
Finally, there's a really well written Art of Oncology piece discussing a poem about a 'miracle' cure for cancer.  The poem totally made my day insofar as it riffs on c-abl (the oncogene)  and Cain and Abel!  The discussion is about how different care can seem from the patient's and physician's perspective:

I believe that we begin to earn the gratitude of our patients for saving their lives by what we do before we prescribe any treatment. What is it that we do? We do what the doctor did in this poem. Compared with the new science, it is so ordinary that we lose sight of its importance. We take a careful history. We examine thoroughly. We think before making a diagnosis. Werecommend treatment. We take the time to talk, to explain, and to encourage. We put order into a chaotic situation. We define a way forward. We suggest to the patient that she is not alone. We will fight with her for her life. The threat becomes less imminent; the fear, less intense. Helplessness is reduced; hope is restored. A basis for gratitude is established.  It is hard work to do this. It is not hard work to take a history, perform an examination, make a diagnosis, or recommend treatment, but it is hard work to do it carefully and thoughtfully for each patient. It is hard work to respond to the threat felt by each patient. Making what we do personal for patients who fear for their lives takes skin off us. We sometimes fall short. Almost without realizing it, we focus on disease, treatment, and probabilities. We make it less personal. This poem reminds me of the importance of the most basic things that I do. So often what I do seems routine. Often, I just try to get through the day. This poem challenges me to keep it personal.

by Drew Rosielle MD ·

Tuesday, October 21, 2008

Grand Rounds

Welcome to another edition of Grand Rounds (v 5.5), the best of the medical blogosphere. Below I have taken the liberty to edit down to what I considered the most provocative, most interesting, or most literary posts published in the last week. I have included all submissions in the first comment of this post so that everyone can see all the posts submitted. (As far as the topic of changing goals of care, there were not enough posts that really focused on the topic so it will be shelved until next time.)

Question: What do you call physicians who write?

Answer: Physicians.

The best post I read in the past week comes from the The Literature Arts and Medicine blog and writer Jay Baruch. In "The Story Always Comes First", the physician-writer is clearly a must read for any physician-blogger and a great one to start off this Grand Rounds. Find yourself 10 minutes of peace and quiet and enjoy the ride.

The Cream of the Crop

Happy Hospitalist defines a population familiar to those who have ever worked in a hospital more than a month: "the hospital junkie." The commenters try to come up with the DSM criteria that may fit these frequent fliers.

A primary care physician at In My Humble Opinon gives an eloquent example of the many things you can say to a family when a patient dies.

A medical student in Australia has anti-abortion protesters outside the classroom and gives us a few thoughts on the potential overturing of legal abortion laws in the Australian Government. A good read over at Degranulated.

Laika's MedLibLog gives a great review of Addison's disease with a personal touch about her experience and missed opportunities for diagnosis.

Laurie Edwards at A Chronic Dose explores the importance of health care for voting in the upcoming election.

Bongi dazzles with tales of treating victims of violence by things with tails. Damn beasts!

Dr. Wes takes sitcom silliness and helps you understand why a 'Best Practice Alert' can cause alarm fatigue.

Sam Solomon at Canadian Medicine Blog posts a great interview with the Canadian Health Minister about the future of Canadian Health Care Reform. The best part of the interview:
TONY CLEMENT:...That's like wishing the sky were purple.

SAM SOLOMON: Do you wish the sky were purple?

TONY CLEMENT: No, I like to wish for things that are realistic.

Pallimed Select
Below are my own choices from blogs that I frequently read and think deserve a little more attention or posts that just happened to come upon my radar screen.

Dr. Shock consistently comes up with some very interesting journal articles. I really appreciated his take on impact of medical student biases towards patients with mental illness.

Maurice Bernstein at the Bioethics Discussion Blog discusses the role of hope for patients in many different variations: miracles, hopelessness, false hope, and more. The first comment makes great reading for Greek Mythology buffs.

Dethmama the hospice nurse shows how to win over the patient who doesn't trust you. Call his cat Tripod!

Leo Levy an ICU nurse at DNR/DNI shares that some trauma nurses don't wear seat belts because they have a desire to avoid being hospitalized like some of the very patients they treat.

William Lee at BMJ Blogs attended a public presentation by Dr Philip Nitschke, director of an Australian pro-euthanasia group, regarding the legal obstacles to getting medically hastened death approved in various countries. Lee highlights how his palliative care view of medicine contrasted with some of the claims made by Nitschke.

PookieMD provides an excellent rant-alysis of the missing pieces from the recent JAMA article on the Professional Ethics of Billing and Collections written by two lawyers aimed at physicians. (HT: Kevin MD )

Thanks to everyone who submitted. If you did not see your post above check the comments for all of the submissions this week. See you next time at Emerigblog!
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Tuesday, October 21, 2008 by Christian Sinclair ·

Friday, October 17, 2008

MagCitrate #2:Prognosis in ESRD & CHF, More

This is the hat tip to Dr. Bob Arnold iteration of the Magnesium Citrate posts as these are all articles suggested to us by him.

1)
Critical Care Medicine has a paper looking at prognosis in end stage renal disease patients admitted to an ICU. This is a nation-wide Swedish study which used registry data to look at short and long-term mortality in patients with pre-existing ESRD who were admitted to ICUs and received renal replacement therapy there (it's a little tough to tell from the article but I think not all of the patients were receiving dialysis prior to admission to the ICU although they all had advanced renal failure prior to admission).

They found certain comorbidities increased the odds ratio of short and long term mortality (e.g. heart failure, etc.) but the more useful data for palliative care people is likely the straight-forward mortality data. Unfortunately the mortality data they present is weirdly incomplete (at least to meet my needs) and doesn't have stuff like simple in-hospital mortality etc. presented numerically. However, there is quite the Kaplan-Meier curve which gives some data reinforcing the idea that critical illness in ESRD patients is a highly mortal event and marker for a poor prognosis. All of these numbers are me eye-balling a KM curve but immediate mortality (presumably in-hospital) was about 20%, 50% mortality in the entire cohort was reached around ~7 months, and the 1 year survival for the cohort was 40%.

2)
Next is one from American Heart Journal looking at a prognostic model to predict early mortality after a hospitalization for heart failure. The data come from a large study of a quality improvement bundle designed to improve outcomes in a hospitalized CHF cohort involving nearly 50,000 patients in over 200 US hospitals (OPTIMIZE-HF study: see here for example). The current analysis involves looking at patients who were discharged alive but had early (within 90 days re-hospitalization or death) and developing a prognostic model to predict who were likely to have those outcomes. Gross early mortality was 8.6% for the entire cohort (still thousands of patients) and early re-hospitalization was about 30%. They were able to create a relatively simple point-system involving age, weight, systolic blood pressure, and serum sodium and creatinine concentrations which predicted risk of 90 day mortality with decent accuracy in a validation analysis.

What I actually found most interesting about reading the article was its conclusion which talked about how this can be used to identify patients who are at high risk of mortality and therefore should be considered for more aggressive management and follow-up. I don't argue that point per se but it was fascinating for me to read those sentences realizing Gosh that never crossed my mind: I was thinking of course that these tools are useful for identifying patients who urgently need to have palliative care-type interventions (whether or not they're seen by a palliative care specialist): discussion of prognosis, goals, hopes/fears for future, advance care planning, symptom and psych-spiritual assessment, etc.

You get the feeling in how the last paragraph is written that CHF is not something that people 'should' die from, that if we just somehow stepped-up the medical care/interventions/monitoring we'd be able to forestall death, and that in fact these early deaths were preventable as opposed to being from a progressive illness that, despite the great and evolving disease-modifying interventions we have - is still a terminal one with morbidity and mortality surpassing many cancers for its most severe forms.

3)
Chest has published 'practical guidelines' for running ICU family conferences. It's a good one for the teaching file and is notable - besides being accurate, readable, and helpful for trainees - that it frames the guidelines as evidence-based ones (which they are insofar as they are in fact based on the best available research). What's pleasing about this is that there is a sufficient evidence base to actually base guidelines on and, along the lines of my post about the Coping with Cancer study, there is a growing amount of data that good communication makes major differences in our patients and families lives and is not just some nice idea.

4)
Chest also has a review on anxiety and depression in COPD: epidemiology, evaluation, how they are way undertreated, how to treat, policy and research recommendations, etc.

Friday, October 17, 2008 by Drew Rosielle MD ·

What does grace mean to you?

Two from this week's NY Times:  


1)
First is one about a theatrical show 'Let Me Down Easy' by Anna Deavere Smith (she is the MacArthur fellowship winning playwright and actress who is famous for creating pieces around verbatim performances/reenactments of people talking about their experiences such as Rodney King).  This show is about medical care (a doctor who stayed at Charity Hospital after Katrina, a Rwandan medical student who witnessed genocide) and afterwards audience members are asked to write on boards in the lobby responses to the question What does grace mean to you?  The article is written by Pauline Chen (see this post) who writes in typically eloquent fashion:
I had not acknowledged the inner voice that carried on in my own head in the theater that night, despite my belief that I was really listening to the narratives that unfurled on stage. I did not acknowledge that listening to others, particularly to patients, requires letting go of a part of yourself, as Ms. Inema did, and as Ms. Smith does.
There's an audio interview between Dr. Chen and Ms. Smith (link is on the main article page).

Hat tip to Dr. Paul McIntyre for this.  

2)
There's also a brief essay written by an ER doc about watching his father, a retired radiologist, die.  He talks about wondering why he didn't cry when his dad died:
Or was it because he died at home, surrounded by those he loved, in such stark contrast to what I experience so often at work: all of those patients circling the drain on trips between nursing home and emergency room, and then dying alone with no one to feel their blood turn cold?

by Drew Rosielle MD ·

The 'Academy' Awards

We have been honored and humbled (check out the company we share) with an award from AAHPM (it was announced yesterday in this e-news update):  The AAHPM PDIA* Palliative Medicine Community Leadership Award.  We will all (Christian, Tom, and I) be coming to Austin in March to accept the award and talk a bit about Pallimed.  


Thanks to everyone (readers and Academy-types) who have supported the blog over the years.  

Since we're going to be talking about the blog - let me know (via comments or emails) if any of you have questions about it you'd like answered.  

by Drew Rosielle MD ·

Wednesday, October 15, 2008

Magnesium Citrate #1: Empathy, Massage, fMRIs, More

I have reached some sort of critical-mass of articles-to-blog, so much so that I am developing a feeling of paralysis as I've realized I've been sitting on some papers for over a month. I've decided it's time for some Magnesium Citrate, if you know what I mean, and so plan on a few disorganized Pall-pourri-type posts to get some things out there that are worth a look, albeit without much commentary - sorry.

1)
Archives of Internal Medicine has a look at missed opportunities for empathy in clinical encounters with lung cancer patients. The study involves analyzing clinic visit audio recordings between physicians and lung cancer patients in a Veterans Administration hospital - looking at emotional content, physician responses, etc. They don't specify explicitly where in their disease the patients were but the methods section implies these were patients being seen near the time of diagnosis or even prior to formal diagnosis as they were being evaluated in a thoracic oncology clinic. Can you guess the results? Patients made frequent remarks involving emotional needs or other concerns throughout the visit (median of 18 times/visit) and physicians made empathetic statements about twice a visit - mostly stacked toward the end although patients made 'empathy-worthy' comments throughout. Surgeons were less likely to be empathetic than oncologists, and the most common themes which physicians responded empathetically to were concerns about the health care system (presumably troubles with clinic waiting times, drug co-pays, etc.) not 'actual' medical concerns about the cancer, prognosis, treatment, etc.

This sort of research (research which closely analyzes the specific content of patient encounters) is fascinating but it's not the sort of thing one should make any conclusions about - it's purely descriptive at this point, but one hopes as this evolves that will change....

2)
Annals of Internal Medicine has a research paper comparing simple touch to massage therapy for pain in advance cancer patients. The study involved randomizing ~300 advanced cancer patients (either receiving hospice care or from a single academic cancer center) who had pain at least 4/10 to 6, 30 minute sessions over 2 weeks of either massage (given by certified massage therapists - they described in detail in the study what they did) vs. simple touch as a control. While obviously unblinded they really tried controlling for factors such as attention, time spent with the patient, etc:
We designed the control exposure, simple touch, to control for the time, attention, touch, and healing intent components of the intervention. The control consisted of placement of both hands on the participant for 3 minutes at each of the following locations bilaterally: base of neck, shoulder blades, lower back, calves, heels, clavicles, lower arms, hands, patellae, and feet. Pressure was light and consistent, with no side-to-sidehand movement. Control therapy providers interrupted conscious healing intention by silently counting backward from 100 by 7, reciting nursery rhymes, or planning their day's activities. The control treatments were provided by individuals with no past body or energy work experience.
Essentially they found both interventions led to immediate improvements in pain, massage more so: 2 point improvement overall compared to 1 point improvement with simple touch on an 11-point scale. There were no differences however in sustained pain relief (baseline pain at 1, 2, and 3 weeks after the initation of the trial (both groups had a slight diminishement in pain). So: massage is helpful, albeit only on a short time frame. Besides that finding, this is study is notable because 1) it involved a lot of hospice patients, traditionally thought of as a 'tough-to-study' population, 2) it was a pretty big study overall given the context (symptom management in advanced cancer), and 3) it is an example of next-generation, well-designed, controlled trials of 'alternative medicine' therapies.

3)
Lancet Neurology has a study suggesting that patients in the 'minimally conscious state' experience pain. It's based on comparing healthy controls with MCS and persistent vegetative state patients in how they responsed to noxious stimuli when they were in an fMRI. Essentially MCS patients responded (had similar fMRI findings) to pain similarly to healthy controls (PVS patients didn't respond much). This suggests 1) PVS and MCS really are different - some have argued this point, and 2) MCS patients should be given analgesics. I had no conception that #2 was even a question, but the way the discussion is phrased it suggests someone thought that was a question worth investigating (they talk about the need to give MCS patients analgesics when invasive procedures are done, etc.). Yikes. Previous posts about the wild and crazy world of interpeting fMRIs and speculating on the meaning of consciousness and self-hood are here. (Actually I'd suggest reading this from Salon - you have to sit through a site-pass commercial however).

4)
Transdermal granisetron has been approved in the US for chemotherapy induced nausea and vomiting prevention. I'm reluctant to link to drug company sites, and Medscape, which is where I heard about this, requires an annoying registration, and so I am going to link to the only research I could readily find on it which are these poster abstracts (it's a pdf, scroll down to the 2nd page). I can't find pricing cost - anyone know?

5)
JAMA recently had an editorial about emotional intelligence and graduate medical education. It is mostly a theoretical piece, arguing that the scientific concept of EI (they deliberately distance themselves from the popular books on EI) may be helpful for conceptualizing, assessing, and teaching interpersonal and communication skills. I read it with interest, as someone who observes a lot of doctor-patient interactions, and who tries to teach young doctors how to do it better, but found that overall the editorial was too vague/theoretical to actually inform anything I do. It may (this was, after all, published in JAMA) portend future scrutiny from the Powers That Be (e.g. the ACGME) about how communication skills are taught and assessed....

6)
I've had some correspondence with Dr. Holly Prigerson the PI for the Coping with Cancer study that I recently blogged about. She clarified a few things about the study and promises there are many more analyses and publications forthcoming. I edited some of her comments to me and put them in the comments for that post: click here and scroll to the bottom to read. Thanks Holly.

Wednesday, October 15, 2008 by Drew Rosielle MD ·

Excellent Blog Post on Savage Editorial and I-1000

Jay, a primary care physician who writes at Two Women Blogging does an excellent review of the Dan Savage editorial on Washington State's I-1000 Death With Dignity initiative I posted on previously. She covers many issues very well and I will highlight a few of my favorite parts here:

I was also shaken by Savage's article, mostly because his mother had lousy care. I don't see any mention that hospice or palliative care was offered to her at any point, although she clearly knew she had a fatal illness and was deteriorating.
I really like this primary care doctor!
Savage equates physician-assisted suicide with "end-of-life-pain-management". No. No. No. The medications used for suicide are not pain medications; they are sedatives. We can achieve adequate pain control for more than 90% of people at the end of their lives (see, I told you I've been studying).
She would make a good palliative care doc it seems! And from reading her past posts she is studying for the palliative medicine boards! Woo-hoo!
If Savage was trying to say that assisted suicide can be merciful, I would agree, but I think he is speaking from the common - and mistaken - assumption that good pain control will shorten life, and is only offered as a means to death. Most people with pain and shortness of breath can benefit from treatment with narcotics.
I'll giver her a pass on the 'opioids not narcotics' pet peeve because she makes some great points!

She brings up an interesting take from Prof. Susan Wolf who thinks women will disproportionately choose physician assisted suicide:
And might this tendency be compounded by a cultural lineage exalting female suicide, a tradition going back, Wolf suggested, borrowing from the work of the French classicist Nicole Loraux, to Greek tragedy, where suicide is carried out almost exclusively by women?
That is an interesting point, I never would have thought of if it wasn't for the internet and blogs. Ain't technology amazing at creating new relations and connecting ideas and people?

And she finishes the post with a reference from the classic NEJM article by Quill from 1991. If any of you have not read his piece on Diane, go to your medical library now. Or read it online at a non-NEJM approved site. It is a seminal piece of writing for all of medicine regardless of how you feel about his actions.

I hope she blogs more on palliative medicine issues.
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by Christian Sinclair ·

I-1000 Advertisements from Both Sides & More Columns

(For EMAIL subscribers click the title of this post or links below to see the videos)

Martin Sheen in 30 second spot for No on I-1000



Personal Story in support of I-1000


Do you think these ads accurately portray the issues?

A Seattle newspaper columnist who opposes I-1000 has a couple of columns about his concerns. His main argument is about the foundation of a democracy is to protect life. Any PoliSci majors want to debate that point?

Dan Savage has a follow-up editorial with a slight mocking tone (Life is Beautiful at the Hospice) regarding the argument that physician-assisted suicide is not necessary because of hospice.

Death is always beautiful and peaceful at the hospice—and once you’re in a hospice, why, you won’t want or need the lethal dose of medication that I-1000 would allow your doctor to prescribe you (so long as you had less than six months to live, asked for it twice, once in writing, and a second doctor signed off on it), so what’s the point of voting for that silly death-with-dignity initiative anyway?
He also makes another post highlighting commenters who have hospice horror stories. What concerns me is some of the mischaracterizations of what hospice is and is not by people who have n of 1 or 2 experiences. As I said in my recent post, hospice and palliative medicine cannot fix everything, but this almost feels like it is diminsihing what hospice can do.

USA Today has also covered I-1000
so it is getting some national attention. A commenter at Medical Futility Blog noted that it may not become a national issue for this reason:
Makarios said...

Given the fact that there's an election campaign on, I don't think that anyone wants to go there. It's not a Democratic issue, and the Republicans remember the public revulsion that was expressed when they were practically trampling on one another to get Terri's feeding tube re-inserted. Accordingly, the noise machine has likely been set to "mute" on this sort of thing--at least until after election day.

For a lot of these posts I would encourage you to read the comments to get the feel for what the public thinks about medically hastened death.

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

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by Christian Sinclair ·

Monday, October 13, 2008

Dan Savage Editorializes Physician Assisted Suicide

(See standard disclaimer at the end RE: Hastened Death)
I wanted to highlight some of the editorials and articles regarding the upcoming Washington State I-1000 Death With Dignity Act. (You can get some basic info from my previous post, if you are not familiar with the proposed legislation)

The issue of hastened death and specifically physician-assisted suicide is important for the palliative care community as it highlights many of the concerns we (legally) deal with on a daily basis: autonomy, adequate symptom control, the personal nature of suffering, conflicting values among patient, family and staff, conflict of faiths, the loss of control in the dying process, the possibility for personal growth during times of crisis. These concerns are in a complex dynamic in palliative care and so the many heated arguments about hastened death highlight the turmoil involved in caring for dying patients. This allows the general public some insight into what hospice and palliative care teams would call Wednesday afternoon.

Dan Savage wrote an editorial last week titled, "In Defense of Dignity
I Hate to Play the I-Just-Watched-My-Mother-Die Card—But, Um, I Just Watched My Mother Die.
" Please go read it then come back here. Pallimed linked to his eulogy for his mother last April. (An excellent read with great insight into family loss.)

His piece focuses mostly on control over the dying process and the issue of choice. I think the selection of the word 'choice' is important and I am surprised more has not been made of this initiative from the national press or even medical blogs. This would seem to be a very polarizing and political issue which would have have the press salivating, no?

My stepfather would rush her to a hospital, and she would come home a few days later having accepted some previously feared development—being hooked up to an oxygen tank, having to use a walker—as her "new normal."
I appreciate his use of the phrase 'new normal' as this encapsulates the increasing medical support when one faces declining health and the fact that patient and family often change what is an acceptable state of health until there is some threshold. This line in the sand is different for every patient and every family. It is even different for the same patient at different times in their life. 'Past me' may not have chosen 6 years on hemodialysis for 'present me', but 'present me' thinks it is just fine and would not mind if 'future me' can claim 10 years on dialysis if 'future me' is still alive.

Savage goes on to comment on two widows who have opposing views on physician-assisted suicide:
The woman voting for the initiative—whose husband died of brain cancer—wants terminally ill people to have a choice at the end of their lives, a choice to end their suffering and hasten an inevitable, rapidly approaching death. The woman voting against the initiative wants—well, she wants what we all want. She wants to have a good death, a peaceful death, a death like the one her husband, um, enjoyed.
Cynical, yes, but some people can have a good and even great experience while dying. But I can't Polly-Anna everything and say that is possible for everyone. The medical aspect of dying is just one part, and some might say a small part of making sure dying is good and peaceful. If we (as individuals and as a society) look at death as a significant event in life much like being born, hitting puberty, your first kiss, getting a first job, getting married, having children, getting fired, becoming a grandparent. There are aspects of celebration and sadness in each of these as there is in death. For all of these events the balance sways towards celebration when one is adequately prepared and supported. Same as in death. If one has not made some initial thoughts about the 'inevitable' end of one's life and got the right people in place to help, it is likely going to turn out poorly. Palliative care and hospice can help make great advances in both of these areas but a lot of it has to come from the person within.
Don't we all want that kind of death? Wouldn't it be wonderful if each of us could enjoy a Hallmark death? Wouldn't it be ideal if each of us passed from this life into the next—aka "the void"—enveloped in the love of good caregivers and under the care of competent "pain management" professionals? But not everyone is so lucky. Some of us have to endure deaths that are gruesome and protracted and excruciatingly painful, deaths that involve pain that cannot be "managed," deaths that our loving caregivers can only stand helplessly by and witness.
So what do we as a society do about the one's who are not prepared and do not have the right support in place? Well an easy fix is to ensure equal access to competent pain management palliative care professionals. That is a pretty good way to avoid "gruesome" and "excruciatingly painful" deaths. It does nothing to address the suffering of time as one waits for the hour of their death. Waiting and suffering are doppelganger's and if that is the core issue of suffering as it may be for some patients and likely many more family members, there little to fix that except the legalization of hastening death via medical means. The only 'cures' I know for suffering from time is helping people find some meaning in the time and to help bring some grounded perspective to the hours that feel like days. What surprises many people is that dying takes a while. Some of the most difficult conversations in palliative care center around, "Why haven't I died yet?"
...a doctor pulled me and my stepfather out of my mother's room. They were out of options. Nothing more could be done. Her battered lungs were failing; one had a widening hole in it. Amazingly, the doctor didn't say, "It's over, this is it." He laid out the facts and we stared at him dumbly for that world-without-end moment, and then one of us—my stepfather, me, I don't remember—finally said, "So this is it?"

The doctor nodded.

Ugh. Do doctors still communicate like this? I guess so. The above exchange combined with other statements in the editorial leads me to believe his mother did not receive any services from a palliative care team. How a medical team performs around a dying patient influences the perception of the family in so many minute ways. Remembering family members names, getting them something to drink, asking them about fond memories, being present when there are tough conversations, coming back to check in even when you know don't have to. These all help and they are much more than doing nothing.

So if Dan Savage sees this as modern care of the dying, then I can see his stance supporting hastened death and even feel it is justified. If...that is all we had to offer. But it is not. Palliative care is a growing field spurred by demand from families and patients and the health care community to make sure situations liek these do not happen. Death is tough but with adequate preperation and support it can be an amazing experience. I realize that approach is not for everybody and some people would like a quick, painless, death with no worries about 'lingering.' But to decide to make hastened death available to all requires a large civil discussion, and I wish this state intiative had a broader audience so palliative care could have a large educational platform. So there is my two cents.

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



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Monday, October 13, 2008 by Christian Sinclair ·

Grand Rounds Call For Submissions

Next Tuesday, Pallimed will be hosting Grand Rounds, a weekly best of the medical blogosphere. This is the second time Pallimed has hosted and we are excited to participate again. Thanks to Dr. Val Jones and Colin Son for recently talking the helm and continuing this great tradition.

The theme for next week will be: "Changing Goals of Care"

It can be changing the goals in any direction, not just the curative towards palliative route, although I expect that is a common touchstone for many in the medical field.

And since Grand Rounds is getting very large, I will make sure you all know now, I will write more in depth about 10-15 posts, but I will make sure to list all submissions. Adhering to the theme is encouraged but not necessary. I plan to be searching for good posts that are not submitted as well.

So get those submissions to me at:by 11:59 PM Sunday October the 19th. Grand rounds will be posted on Tuesday the 21st in the am.

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by Christian Sinclair ·

Friday, October 10, 2008

Physician Assisted Suicide Vote in Washington I-1000

A few months ago, Pallimed featured an International Review of Hastened Death reports in the media. Now the issue of legalizing intentional medical hastening of death (aka Physician-Assisted Suicide or Physician-Assisted Death depending on one's point of view) will be voted on by the citizens of Washington State in November. Surprisingly this has made little waves in the news on the national level or in the medical blogs, but the political blogs and Washington State Media are highlighting this issue.

The proposal is titled Initiative 1000 (I-1000) - The Washington Death With Dignity Act. Some excellent neutral detailed information can be found at Ballotpedia (who knew it existed?). It is being sponsored by a former Governor of Washington Booth Gardner after his experience with his father dying from Parkinson's disease. A poll in early August found 51 % in favor, with 26% opposed and the rest undecided.

This is not the first time Washington has voted on this issue. In 1991 the proposal was defeated 54-46%. The initiative is based on similar language from the Oregon Death with Dignity Act passed in 1994 and enacted in 1997 after many legal challenges including the Supreme Court.

Both sides claim to have multiple different groups behind them, but when I looked on many of the websites of the organizations and could not find ANY mention of the I-1000 initiative. So when you see the Washington State Hospice and Palliative Care Organziztion listed as opposing I-1000, they don't have any mention on the WSHPCO website. Same thing goes for the ACLU supporting I-1000. Nothin' on the ACLU site either.

Supporting Organizations
National Death with Dignity Center
Compassion & Choices

Opposition Organizations
Coalition Against Assisted Suicide
Not Dead Yet
Washington State Medical Association

Here are the main websites for supporting (Yes on I-1000) and opposing (No Assisted Suicide) the measure.

Dethmama links to some other discussions on the topic on her blog.

In some upcoming posts I will spend some time dissecting some of the op-ed pieces as it relates to care of terminally ill patients, because the essence of the argument for or against physician-assisted suicide has to do with caring for and being a terminally ill person. Since palliative medicine professionals have zillions of experiences with dying people you may be asked about your opinion about the Washington State Initiative so it may be helpful to look through some of the links to become more knowlegable about the requirements, background and reasons for support and opposition of this particular measure.

If you comment on this post, please keep it constructive and avoid any ad hominem attacks.

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


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Friday, October 10, 2008 by Christian Sinclair ·

'The Journal'

As many of you know, 'The Journal' in the US for hospice and palliative medicine will soon be changing from the Journal of Palliative Medicine to the Journal of Pain and Symptom Management. By this I mean the official journal of AAHPM is changing in 2009 from JPM to JPSM. I assume this will be a controversial move. Before I say more:

Major conflicts of interest disclosure: 1) my boss was the founding editor of JPM (David Weissman), 2) I am a sort-of section editor for JPM (Fast Facts), 3) the copy-editor of JPM has an office right across the hall from me and we yell (across the hall) at each other all day, and 4) I've had a couple of small things published in JPM (and not JPSM).
Writing, however, as a reader and a palliative care clinician I wanted to note simply my sadness, and I guess confusion, about this. It's lame, and probably geeky of me, but I feel like I'm mourning something here....

JPM has really become the world's premiere palliative care journal (yes this is just an opinion, and admittedly an American-centric one) in a little over a decade and we've all watched it balloon in size (girth) and number (issues per year) as the profession and come into its own in the US. There are other journals which publish excellent material relevant to my practice but nothing with the consistency and quality that JPM has achieved, particularly in recent years. I assume (and the press release I linked to above promises) that in fact JPSM will change its content and focus to better serve the needs of HPM professionals and I look forward to that. It won't however change the fact that this new specialty in American medicine will now be represented by a journal whose name captures only half of what we do*** - pain and symptom management. The other half - the fragile, somewhat tough-to-define aspects of our clinical lives - the careful communication, psychosocial-existential care, family and bereavement care, goals clarification, the witness-to-suffering, this nexus of skills and approaches brought to patients with severe illnesses which has come to be known as palliative care and palliative medicine - is lost.

It's just a title of course, and with a good journal with good articles it won't matter too much, and I look forward to two premiere palliative care journals. As an Academy member JPSM will be arriving in my mailbox early 2009 I guess - I'll be signing up for JPM here.

***Addendum October 13, 2008: The Academy announcement I linked to above does say that they plan on eventually changing the title of JPSM which is good news (I completely missed this in the announcement - another palliative care lesson for me in how grief can cloud one's ability to take in information...!).

by Drew Rosielle MD ·

AAHPM Case Conference Submissions Now Open

Hey all you students of palliative medicine, your chance to present at a national conference is here! The 3rd and last call for submissions for the AAHPM/HPNA Annual Assembly has opened (Oct 1- Nov 3rd). This call is for professionals-in-training from any discipline to submit a clinical case for a 20 minute presentation. I am very glad to be a part of this for the 5th year now, and grateful to the AAHPM and HPNA for their ongoing support.

Go here now to submit your case or cases!


On a personal and historical note:

I am somewhat sad though because it will be my last year being involved with case selections and presentations. It has grown over the past 5 years, and I need to move on and let other people take the helm. Personally I think these case presentations are one of the great hidden gems of the Annual Assembly; great, fast, focused presentations and national speaking experience for newer members to the field.

Since this is my last year with the case conferences, I wanted to share a bit of the history of how it came into existence, because I think it demonstrates how persistence, teamwork, and the AAHPM's willingness to take a risk made a big difference.

So in 2004, the Professionals-in-Training Special Interest Group (PIT-SIG) formed* and made a list of goals to help junior members of the Academy get more involved. We had a lot of ideas at the inital brainstorming session with Chad Farmer, Lynn Bunch, Brian Murphy, Laura Morrison, KJ Williams, Annette Geisler, and others. But one idea that stuck out the most was an opportunity for palliative medicine fellows to present at the Annual Assembly.

I remember very clearly going up to the (then) new president David McGrew, with all the confidence I could muster and introducing myself as a palliative medicine fellow, and newly elected chair of the newly formed PIT-SIG and that we would be submitting a proposal for a reserved slot for fellows to present. Only after I finished talking to him did I realize how...ummm forward that was.

The first year we had 13 submission and 5 presenters in a single 90 minute slot. We had a smattering of people there, but it was a start. In 2008, we had 61 submissions and 9 presenters in three 60 minute slots. The case conferences have benefited from the involvement from many people at the AAHPM including: Angie Forbes, Karen Nason, Mary Beth Benner, and Julie Bruno.

Thanks to all of the people who have helped to select cases and moderate the conferences: Giovanni Elia, Kelli Gershon, Laura J. Morrison, Solomon Liao, Christine Ritchie, Lynn Bunch, Pam Fordham, Susan Block, Dick Stephenson, and Drew Rosielle.

*That's a whole other story

Cross-posted to the PIT-SIG blog

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by Christian Sinclair ·

World Hospice & Palliative Care Day

Don't forget that Saturday October 11th is World Hospice & Palliative Care Day. I was surprised to hear this was tomorrow because in past years I have been bombarded by emails about it. Did anyone else miss the boat?

if you feel like you missed out planning any activity this year, then sign the online petition for Palliative Care and Pain Treatment as Human Rights at IAHPC.

Next year, Pallimed will be more on the ball and get you excited and informed about this earlier. In the meantime I will try to ramp up our international coverage of palliative care access issues. Readers if you have any tips send them to me at:



"Hospice and palliative care: a human right"

HT to Hospice & Caregiving Blog and Thaddeus Pope @ Medical Futility Blog
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by Christian Sinclair ·

Tuesday, October 7, 2008

EOL discussions and EOL outcomes

JAMA (huzzah) has published what will likely be remembered as the core publication out of the Coping with Cancer Study (CWCS)(see our posts here, here, and here for more). This analysis looks at the association between end-of-life (EOL) discussions and several outcomes including patient mental health and aspects of EOL care. Briefly: the CWCS was a prospective, multi-institutional (several cancer centers in Northeast US and Texas) cohort study of advanced cancer patients (metastatic; 'failed' first line chemotherapy) and their family caregivers. It involved an intensive psychosocial assessment including disease understanding at baseline; patients were followed over time and bereavement outcomes were measured in family members of those who died (most ~6 months post-loss). This paper is based on the ~320 who died by the time the analysis was done (total enrollment was a little over 600): median time from enrollment to death was 4.4 months.

This study compared outcomes in those who reported having a discussion about EOL issues at baseline vs those who didn't. The presence of an EOL discussion was defined by patients answering positively to the question: Have you and your doctor discussed any particular wishes you have about the care you would want to receive if you were dying? They used 'propensity score weighted' adjustments to balance differences between groups: I can't say that I understand exactly what this means - it seems to be different from the use of propensity scores I discussed previously in the blog. Their use here seems to be, and I trust any statisticians out there will forgive me for saying this, a propensity-score enhanced regression model to adjust for baseline differences between groups. Short story: they used linear and logistic regression models to try to control for underlying differences in the +EOL conversation group and the -EOL conversation group.

37% of these patients (who had a median 4.4 month prognosis!) answered they had EOL discussions at baseline. The differences at baseline, for which they adjusted, were: performance status, symptom burden, survival time, and recruitment site. About recruitment site: rates of EOL conversations varied from 16% to 62% depending on which cancer center you were at. Even if you believe the rest of the results here are bogus that wide variation in patient care (because this is a patient care issue) is astounding and cause for alarm.

Anyway - reporting an EOL conversation at baseline was associated with major differences (improvements) in EOL care and bereavement and no significant differences in adverse mental health outcomes. Rates of depressive and anxiety disorders, PTSD, subscale scores looking at depressive and anxiety symptoms, etc. were the same between groups, even after adjustment. And the results keep on getting better: in another analysis in which they adjusted further for baseline treatment preferences, terminal illness acceptance, and self-reported desire for prognostic information, rates of ICU admission/ventilator use/resuscitation prior to death were lower and rates of hospice length of stays over 1 week were higher in the baseline +EOL conversation group. These were pretty substantial differences in the relative rates (e.g. 11 vs 1.6% for ventilator use; 66% vs 45% for longer hospice stays, etc.). Ok, I guess that last one is a pretty good difference in absolute rate as well - 20%.

These differences in care at the end of life were associated with substantial changes in bereaved caregivers ratings about patients' quality of life (better in those who had less 'aggressive' interventions and who had longer hospice lengths of stay). Bereaved caregivers of patients with more aggressive interventions reported more depression, regret, and other unwelcome outcomes.

Some thoughts:
Because I like the outcomes I am trying to be cautious in interpreting them. The two big questions that CWCS is trying to answer is 1) does having these conversations hurt our patients by causing emotional harm, and 2) does having these conversations help our patients and their loved ones by improving the care they receive as they die? And these findings overwhelmingly show that patients who report having these conversations are no worse off than those who don't report such conversations and the care received by these patients as they die is measurably different/better and these differences are associated with improvements in outcomes in loved ones. One could also argue that it's not just having these conversations (because one assumes that most patients had an EOL talk prior to their death if not at baseline) but that it's having these conversations relatively early that made the difference.

I think the major caveat here, which is one that can't be overcome without a randomized trial (which will never happen, and this sort of study design will likely be the best level of evidence we'll get on this topic), is of course confounding from unmeasured patient characteristics. Two possible sources immediately come to mind 1) patients who willingly report talking about dying with their docs to a relative stranger (a member of the research team) vs. those who don't (e.g. what is actually being measured is not rates of EOL conversations per se but patients' willingness to talk about those conversations, or something along those lines), and 2) patients who reported EOL conversations were more likely to want to have them in the first place and, again, the 'real' difference between the groups is something along the lines of innate patient characteristics regarding openness to EOL discussions, talking about the future, etc. You could imagine that these 'open' patients were more amenable to less aggressive care as they died, may have had more open/sharing relationships with their caregivers which resulted in better bereavement outcomes, etc. The other issue is that they may be measuring a broader pattern of physician behavior, and this reporting of an EOL discussion (or not) really reflects substantial differences in overall physician care for their patients, being more or less likely to offer/recommend aggressive care, etc. and that "-EOL conversation" is a proxy here for, bluntly, bad end of life care.

Reflecting on how concerned I am about confounding, I'm asking myself how would I have responded to this if they found that early EOL conversations had no effect on EOL care (would have believed it, and wondered if the measurable differences were too small to be appreciated with an N of 320) or emotionally 'harmed' patients such as by increasing levels of anxiousness (I think I would have believed that too, although it wouldn't have led me to conclude we shouldn't do it but look more into how it's done, etc.). Given that, the real benefits which seem to be associated with such early conversations, and the disappointing rates of these conversations and disparity across treatment centers, I think that the CWCS has given real backbone to the idea that 'early' EOL discussions should be a standard of care for advanced cancer patients, and that this is not some nice fantasy of self-righteous palliative care people who think that talking about dying is 'just the right thing to do' but something backed by good data.

It's not a 'moral' question, but a clinical one of ensuring the best possible outcome for our sickest patients.


ResearchBlogging.orgAlexi A. Wright, Baohui Zhang, Alaka Ray, et al (2008). Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA, 300 (14), 1665-1673

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Tuesday, October 7, 2008 by Drew Rosielle MD ·

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