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The December edition of Palliative Care Grand Rounds, a monthly review of the palliative care blogosphere, is up at Death Club for Cuties.

Jerry is a nurse in a neuro ICU who blogs for "...nurses who care for patients and families at the end of life.  Laypeople and other health professionals may also find it useful."  Here he describes how he came up with the name for his blog:

 "It came to me in a flash of inspiration late one night while standing in front of the fridge. It was loosely inspired by the emo band, Death Cab for Cutie, though I'm not a fan. I've seen exactly one video of one song, and that was quite enough."

It is a shame that Jerry is not a fan of Death Cab for Cutie, because 1) they are a really good band and 2) they sing about palliative care as I blogged about at the arts blog with an interpretation of a song about dying in the ICU. (nudge nudge, Jerry)

Despite his poor taste in music, I really like Jerry's approach on a blogging.  Very personal but also academic and enlightening and not just full of self-reflection.  The personal reflection helps to inform the larger discussion which is what a great blog should do. And I am not just saying this because of his very kind shout out to Pallimed.


Go read Grand Rounds, and Jerry's blog, leave him a little love in the comments.

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In consideration of the many family dinners that will occur over the next few days of the Thanksgiving holiday, for the second year in a row Pallimed is hosting (along with several other medical bloggers) a guest post from Engage with Grace and the One Slide Project. This post will stay at the top of Pallimed from Tuesday the 24th until Sunday the 29th. You can also join the Engage with Grace group on Facebook.

Have a safe and meaningful Thanksgiving!

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Some conversations are easier than others

Last Thanksgiving weekend, many of us bloggers participated in the first documented “blog rally” to promote Engage With Grace – a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations – our closest friends and family.

Our original mission – to get more and more people talking about their end of life wishes – hasn’t changed. But it’s been quite a year – so we thought this holiday, we’d try something different.

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We’ve included them at the end of this post. They’re not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we’d start with five parallel questions that ARE pretty easy to answer:




Silly? Maybe. But it underscores how having a template like this – just five questions in plain, simple language – can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we’ve included the five questions from Engage With Grace below. Think about them, document them, share them.



Over the past year there’s been a lot of discussion around end of life. And we’ve been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife’s preferences were not what he expected. Befitting this holiday, The One Slidewww.engagewithgrace.org now stands sentry on their fridge.

Wishing you and yours a holiday that’s fulfilling in all the right ways.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

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I'm posting tonight, relatively succinctly (yes, it's possible), on three different articles. This will be my last post for me, and I suspect Christian and Lyle, until after the Thanksgiving holiday. Happy Thanksgiving, and safe travels, to our readers this week. For those of you who use Thanksgiving as a time of reflection, I think this week's article from The Onion captures the national mood well.

Critical Care Medicine has a paper about the prognosis of critically ill stroke patients.

The study (retrospective; N=~31000; used Medicare claims data from 11 metropolitan regions in the US in 2000) looks at short and long-term prognosis in older patients (Medicare beneficiaries) discharged after a hospital stay for an ischemic stroke (so, while considering the actual survival numbers below, recall that these don't include patients who died during their hospitalization for a stroke). Survival, among other things, was compared between stroke patients who were admitted to an ICU during their hospitalization vs. those who weren't.

26% of patients were admitted to an ICU - these tended to be older, and not surprisingly were more likely to be mechanically ventilated (11%) and receive PEG tubes (11% of ICU patients vs. 6% of non-ICU patients). ICU patients overall had more comorbidities, although certain comorbidities seemed to 'protect' some patients from the ICU, presumably because of differences in chosen treatment intensity (e.g. dementia, history of prior stroke).

General survival data are presented. Overall 30 day mortality was 15%; 21% for ICU patients. 30 day mortality for mechanically ventilated patients was 65%, and 24% for those given PEG tubes. 1 year mortality was markedly worse for patients who were mechanically ventilated or received a PEG tube - 82% for MV, 65% for receiving a PEG - compared to an overall 1 year mortality of 32%. (PEG tube insertion wasn't particularly associated with a worse survival at 30 days).

The authors' discussion of the PEG outcomes:

If it is assumed that patients requiring a PEG have either a greater severity of dysphagia or a greater severity of stroke itself, then one may postulate that PEG offers a short-term survival advantage, because these patients may otherwise be expected to have a higher death rate. We believe, however, that our findings are the result of a selection effect, whereby the decision to place a PEG by the clinician staff, patients, and families is made only in those who are deemed to have a reasonable chance of survival, at least in the short term. Certainly, this advantage is not evident at 12-month follow-up, when the adjusted HR increased to 2.59. Thus, in those who survive the initial 30 days, the need for a PEG appears to be a better predictor of long-term mortality.

Thanks to Dr. Bob Arnold for alerting me to this.

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JCO has a paper looking at prognostic acceptance in cancer patients, and its relationship with well-being. It's a Canadian study, involving 380 patients with advanced cancer (enrollment criteria including having an expected prognosis of under 6 months and being aware of the incurable nature of their cancer; this number is out of 920 who met enrollement criteria - the rest declined or died before the interview could occur; about 40% declined from the beginning and one wonders if these were disproportionately people who weren't doing well). They were interviewed about a lot of things, including whether they accepted their incurable cancer vs. not (based on answers to a question, in a semi-structured interview, of 'Do you feel you can accept your situation and come to terms with all that is happening?' They compared patients who endorsed acceptance (most of them; 74%) with those who didn't.

The results are relatively straight-forward. Non-acceptors were younger, were more likely to have above-high-school education, and were more likely to have (based on concurrent screening during the research interview) depression and/or anxiety. No surprises there (well, while the 'above high-school education finding has not been a strong trend in this sort of research it's not a shocking finding either).

More interesting is the semi-quantitative part of the paper, in which they describe how these patients discussed their coping (or lack of). It's a like a mini-primer of how our patients cope or struggle with facing their deaths. It mentions an aspect of this that I've been thinking about a lot lately based on several patient encounters - the role of having family members who also accept their illness in helping people cope. It's a uniquely lonely place - to know you're dying - and not to have anyone who you can even mention that reality to or discuss it in a straight-forward way. There are many flavors of this: loved ones too gobsmacked by their own grief to be able to engage with the patient him/herself about what's going on, loved ones whose only response is to say 'don't think about it,' 'keep positive,' 'you'll beat this you're a fighter,' 'pray.' All those strategies are part of a healthy coping package for most people of course, but aren't sufficient for those who Know and want to connect with loved ones about what this all will mean. This stuff, in isolation of any other space for discussion, seems like a kind of 'positive-only' form of emotional distancing, and I've had many patients complain to me about it. A similar thing can occur with clinicians as well - ignoring the elephant in the room (the fact that the patient is dying) and talking about the scan results, or the next treatment steps. I'm curious if readers often find themselves in this position - realizing you (the clinician) is (at least temporarily) the only individual with whom the patient is able to talk about what they actually want to talk about.

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Clinical Chemistry has a fascinating case discussion about finding hydromorphone on a urine drug test in a hospice patient receiving high doses of morphine. It discusses hydromorphone as a minor metabolite of morphine, and one that can be found in urine drug testing in patients only taking morphine (which they argue this patient likely was - was in a sequestered environment long-term, etc.). In talking to colleagues and friends nationally who work in palliative care settings, urine drug testing is becoming a real presence in our clinical practice (perhaps used rarely, and reluctantly) as the reality of aberrant drug use in cancer patients in palliative care settings is becoming more of a palpable clinical challenge. That said, the more I read about urine toxicology screening, the less I am convinced it's good for much other than demonstrating some modicum of compliance (but any smart patient will know what to do about that) and the presence of non-opioid 'street' drugs.

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60 Minutes lead story Sunday night was "The Cost of Dying" which discussed the often quoted Medicare spends XX billion on care for the last XX months of life.  (In this story they used $50B for the last 2 months, but there are many variations depending on the time specified as I am sure most of you have heard before.)  Featured in the story was Dr. Ira Byock and his team as they rounded on patients at the hospital.  They talked with some an accountant/economist and a public health researcher as well. 

I am impressed they captured some family meetings on tape as this is always a delicate dance even without cameras from the most popular weekly news magazine for the pat 30 years watching.  I thought Dr. Byock did a great job in the interview and he said some very tough and possibly unpopular things.  But just because these discussion might be unpopular they are very important.  Kudos to Dr. Byock for bringing up the issues he did.  We need to have a larger national discussion that lacks the partisan political hyperbole.  Basically our nation needs a family meeting.


The comments on the 60 Minutes website are at 233 as of this writing.  As always reading the comments can be the most enlightening part.

Something I found a little frustrating is the lack of the word 'palliative' in the piece.  There was not much discussion that asking for a palliative care consultation could help some people sort out their choices.  What a great platform for education that got missed. 

The transcript is here. Here is the video from 60 minutes below.



Be sure to check out the two short clips that were not shown on the show Sunday night.





If you have trouble seeing these clips from email or RSS subscription please click through to the Pallimed website.

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This will be the last of the Mag Citrate posts for now. And after reading this monster you'll thank me. That said, these are all notable papers, each which I hope will be of interest to at least some of our readers: the progno-wonks, the teaching-filists, the EBM-purists, and the Terrible Things We Do To Our Patients-people.

(Images chosen because they are pretty and available under a CC license. See here for an explanation of the photographic technique used.)

1)
Cancer has a paper about prognosis in advanced biliary cancers. The data come from ~200 patients with unresectable biliary cancers (gallbladder, intra & extrahepatic cholangiocarcinoma) who were enrolled in a variety of studies earlier this decade (it's a Korean study group; unclear if all the patients were Korean). Data were collected both prospectively and retrospectively. All of the studies involved chemotherapy (ie these were patients 'well enough' to be enrolled in chemotherapy studies, which means that if anything these findings overestimate survival). Mean age was 59 years; most patients had metastatic disease and a quarter of included patients had recurrent/metastatic disease (meaning they initially underwent resection, and 'enrolled' in this study at the time recurrence/metastasis was diagnosed).

Gross survival data were presented: median survial was 7 months, 6-month survial 57%, 1-year survial was 28%, 2-year ~10%, and 3-year and beyond was less than 5%. They did a multivariate regression analysis, and in the end having intrahepatic cholangiocarcinoma (vs the other biliary tract cancers), liver metastases, poor performance status, and metastatic disease (vs. locally advanced) were all associated with worse survival. The authors tied this up into a prognostic index to stratify 'better' and 'worse' prognostic groups. Frankly, though, it's all dismal, and without further investigation of this prognostic index, these gross survival data are the most helpful.

2)
Thorax has a review on the role of opioids for dyspnea in COPD. It's a narrative review, which gives some history, reviews the literature, and discusses barriers to opioid use for dyspnea. One major point they make is that despite the consistent research findings that opioids are effective for dyspnea in COPD, long-term use has not been studied at all (most trials involved single doses or were for less than a week). The authors discuss their approach to using opioids for dyspnea - one could describe it as starting extremely low (e.g. 1-2.5 mg of oral morphine) and going extremely slowly; quite a different approach than how most of us use morphine for pain.

They also outline a wide-ranging research agenda. In it they do mention the issue of patients with pre-existing hypercapnea (CO2 retention). I hope someone addresses this, as it remains an important question at least in my practice. The aforementioned research, all of which supported opioids' safety/efficacy (including that they don't seem to induce hypercapnea), was all done in patients without chronic hypercapnea, and I think it remains a real question if opioids are safe in this population (assuming patients have a longer prognosis and goals which aren't strictly symptom-alleviation). (See here for a good systematic review of the research ([it misses a few recent studies, none of which however answer the above questions]). If you've got a patient with a baseline pCO2 of 60, an indeterminate prognosis, chronic and distressing dyspnea which hasn't responded to other interventions - do you give them opioids?

3)
On the 'real evidence' front, NEJM has a sobering analysis of selective reporting of outcomes regarding the use of gabapentin for off-label purposes (most of these were investigating gabapentin's use for chronic and neuropathic pain). They note that much of the information in this analysis comes from documents which were made available as part of an investigation into the manufacturers' off-label marketing of the drug. Internal research protocols were evaluated, and, among other things, compared to what was actually published/made public from the studies. They found that over half of the publications of these trials (8 of 12 published trials) either published secondary trial outcomes as primary outcomes (ie in the research protocol an outcome was designated as a secondary one, but published as if it was the primary outcome) or published secondary outcomes in a manner indistinguishable from the protocol designated primary outcome, or published novel secondary outcomes (ones that weren't ever specified in the research protocol). They also demonstrate that, not surprisingly, for most of these publications which fudged the primary outcome it made gabapentin appear more effective.

Their bottom line: We are concerned that the reporting practices observed in our analysis do not meet the ethical standards for clinical research or maintain the integrity of scientific knowledge. Fair and honest treatment of patients enrolled in clinical trials of any kind requires full, open, and unbiased reporting. Journal publication, a formalized platform for scientific discourse and dissemination of knowledge, should not be used as a marketing tool for off-label drug use.

It's impossible to know how widespread these practices are, and they point out that all this comes from the fact that gabapentin's manufacturers were investigated for inappropriate off-label marketing of the drug (ie we have reason to believe already the manufacturers weren't playing by the book). Nonetheless it's a real warning that the grain-of-salt that we all take with purely industry funded research is not just paranoia or nit-picking skepticism. Of real importance is the reality that there remains a good amount of either unpublished or 'grey' published research - and that what we see tends to be the Drug X Works publications, particularly if research into the drug is industry-only supported. I think gabapentin works, probably most of us who read this think so, albeit modestly so - but what we know about how well it works is probably overstated, however.

4)
JAMA recently published a report looking at broad demographic trends in hip fractures in older patients (over 65 years), which has some prognostic data (we visited this topic a couple years back: see here, item 3). Huge study, using 20 years' worth of Medicare claims data. The gross survival data were in the ball park of the study I just linked to: 1 year survival was ~22% for women, 32% for men. So not quite the sentinel event for older patients with advanced dementia (see here), but not great either.

5)
Archives of Internal Medicine recently published a brief report of a survey of physicians' experience with and satisfaction with chaplains. The data come from a large national survey of physicians (N=1100, all specialties and practice types, about a 62% response rate). Basically most physicians had worked with chaplains and were satisfied with the work chaplains did. A couple things I found interesting about this. First was its use of 'R/S' throughout to denote 'religion/spirituality.' Something about this bugged me, which is weird since I'm generally pro-acronym and not too sensitive about religion/spirituality. Second was this snap-shot of physician belief :

Of the respondents, 10% reported no religious affiliation, 59% reported being Christian, 16% reported being Jewish, and 14% reported other affiliations; 41% agreed with the statement, "My whole approach to life is based on my religion." Forty-one percent of the physicians believed it was appropriate for them to talk about their own R/S with patients when the patient asked about it. Fifty percent of the physicians believed it was appropriate for them to pray with patients when the patient requested it. The physicians reported that R/S "often" had a positive impact on their patients...and "rarely" had a negative impact....

6)
I think I was so distracted by the vertebroplasty debacle in August that I forgot to mention another paper from the same article in the NEJM on prognosis after cardiac arrest. This is excellent teaching file material, particularly for fellows - while these guidelines remain the most widely used ones, this paper has a couple important additions to those. First, and speaking personally here, it has a welcome explanation of the whole somatosensory evoked potentials/N20 response test (an EEG/electrophysiologic test). This is something I've read about, seen my neurology colleagues employ it, but not really have any idea what it involved: this paper explains it (although does not speculate as to why an absent N20 response is such a dire prognostic indicator). Second, it discusses hypothermia protocols and what they might do to prognosis. No answers here, although there's reason to think that hypothermia may improve the general prognosis for those with anoxic ischemic encephalopathy and no brisk/early signs of recovery from absolutely wretched, to just very poor. The author did note that in a recent trial a few patients who had no-better-than-extensor motor responses on day 3 (which has been considered a near universal marker of near zero chance of meaningful recovery) improved by day 6 (showed signs of awareness). Given that many families decide to cease life-prolonging measures several days out from an arrest it's unclear how best to study this: including only those who live a while and whose families choose to continue life-prolonging treatments will overestimate survival and neurologic recovery, as inevitably these patients will be younger with fewer comorbidities than those who died after discontinuing life-sustaining treatments....

7)
The American Journal of Speech-Language Pathology has a paper about SLP's attitudes and beliefs about feeding tubes for patients with advanced dementia. It comes from a survey of a national sample of SLPs (n=350, 57% response rate). The data are confusing, at least on one level. About 80% believe FT improved the nutritional status of patients with advanced dementia and eating problems; about half thought they improved functional status; only 40% thought they improved quality of life. About 40% thought they were the standard of care in their community, although 15% thought that should be the case. About 56% of SLP, given a case of a patient with advanced dementia and dysphagia, said they'd recommend a PEG tube placement.

However, when given a similar scenario, only 11% said they'd want their family to ask for a PEG tube to be placed in them.

This is a stark demonstration of the chasm between what most of us would want for ourselves if we developed advanced dementia (be comfortable, no tubes) and then what we (health professionals) actually do to our patients (for, yes, extraordinarily complex reasons, which includes struggling family members).

I'm beginning to keep my eye out for research about the differences between what people want to happen and what actually happens. Let me rephrase that since most of us want to live long and healthy lives and die relatively quickly after a brief illness. So defining that chasm is an easy one. What I mean is research which more directly looks at what agents in our health care system (whether clinicians, family members, or patients) say they want/they'd want for themselves, then end up getting/doing. One example - which I think is a real study that I didn't hallucinate but can't for the life of me find now (please comment if you know this study) - looks at proxy decision makers for patients on chronic ventilators (chronically critically ill patients - I don't think these were quadraplegics or patients with ALS), asking them why they chose to keep their loved one on a vent, whether they regret it, etc. This study also asked the proxy (family member) if something similar happened to them would they want their family to maintain them on a vent like this. Most said 'No' - although they were electing to do this same thing to someone they loved. It really struck me as emblematic for so much of what we see go wrong here, and underscores a theme that I've returned to on the blog multiple times - is this a 'problem' with families? with individual clinicians (if we just counseled people better, gave clearer/more coherent/stronger recommendations/owned these decisions more - a lot of this could be avoided)? or with The System?

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With all the discussions about advance care planning this summer in regards to health care reform, it is nice to take a step back from all of the hyperbole and hear from the person who actually introduced this legislation into the bill.  Senator Blumenauer (D) from Oregon wrote an excellent opinion column in the New York Times on Sunday recalling his own motivations, and concerns when the seemingly benign legislation wound up into the highly emotional charged family meetings.  Some highlights from the piece:

But now that I and my fellow lawmakers in the House have passed a health care bill, I’m finally free to explain what I learned as the author of the now-famous end-of-life provisions.
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...I found it perverse that Medicare would pay for almost any medical procedure, yet not reimburse doctors for having a thoughtful conversation to prepare patients and families for the delicate, complex and emotionally demanding decisions surrounding the end of life.
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My Republican co-sponsor, Charles Boustany of Louisiana, told me he had many end-of-life conversations as a cardiovascular surgeon but unfortunately they often were too late. He wished that he could have spoken to patients and their families when they could have reflected properly, not when surgery was just hours away.

The editorial should serve as important historical reference when we reflect back on this legislative debut of the modern palliative care era.

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Is it just me or is it kind of interesting that November is National Hospice and Palliative Care month?  The middle of autumn with changing falling leaves, animals fleeing the bitter cold through migration and hibernation, holiday parties beginning with a primary focus on family.  These are just the few analogies I cam up with as I typed this post.  Feel free to add your own in the comments.

Does anyone know the history of why November was chosen as National Hospice and Palliative Care month?  If you do or know someone who does please feel free to drop me a line.

Well enough speculation! Have a happy month celebrating the great work done by patients, families, staff, and volunteers to make hospice and palliative care such an interesting part of life.

If you need to know what other things you need to celebrate this month, I have compiled this list from various sources:

• National American Indian Heritage Month
• National Novel Writing Month
• Aviation Month
• National Epilepsy Month
• National Peanut Butter Lover's Month
• National Diabetes Awareness Month
• National Georgia Pecan Month
• 
  
• (and here is where I got tired of fact checking all of these)
• 
  
• National Pepper Month
• National Raisin Bread Month
• Vegan Awareness Month
• Pancreatic Cancer Awareness Month
• Alzheimer's Disease Awareness Month
• Transgender Awareness Month
• Adoption Month
• AIDS Awareness Month
• Family Caregivers Month
• Family Stories Month
• Gluten-Free Diet Awareness Month
• Inspirational Role Models Month
• Lifewriting Month
• Long-Term Care Awareness Month
• Month of the Military Family
• Pet Cancer Awareness Month
• Pomegranate Month
• Prematurity Awareness Month
• Roasting Month
• Scholarship Month
• Lung Cancer Awareness Month
• Homeless Youth Awareness Month
• Crohn's and Ulcerative Colitis Awareness Month
• The month dedicated to the Holy Souls in Purgatory in the Roman Catholic Church

And my favorite:

Novembeard (US/Canada) or Movember (Australian/New Zealand) - Men grow beards or moustaches (Thank you Internet and Wikipedia!)

I just wish I would have known it was Novembeard at the beginning of the month.  Now I am almost two weeks behind.

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Joanne Kenen of the New America Foundation posted an excellent analysis of the importance of advance care planning language that was supported and kept in the house bill despite the emotional ruckus about straw man arguments this summer.

I love her introduction and wish I could come up with something like this when I am writing posts:

After all the sound and fury of last August, we're pleasantly surprised that the right hasn't risen again with all sorts of horror stories about the resurrection, so to speak, of the "death panels." Maybe because all that fear-mongering was finally discredited. Maybe we are finally getting just a little bit smarter.

She makes a lot of good points:

Right now, there are all sorts of built-in disincentives -- cultural, emotional, legal and yes financial -- against having that conversation. The incentives lie in the other direction: Doctors, and ERS and ICUs are all reimbursed for giving you the aggressive care, and aggressive care is often the default form of care. Maybe our system should make sure you want it.

Although I can't agree with her on all points but the only disagreement I have is more of a technical quibble about DNR vs. AND, which I blogged about earlier this year.

(And we do so wish that the move to change the terminology eventually catches on, so that instead of Do Not Resuscitate, or DNR, we talk about Allow a Natural Death, or AND).

She does add some info I was not aware of:

The Finance bill sets up a 26-site hospice concurrent care demonstration project in Medicare, so adults too in these test programs can have both curative and hospice care.

And the New America Foundation also marks the blogging debut of Dr. Ira Byock in his own accompanying editorial post (actually his second since his first was in August, but still the blog is his debut!)