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January's Journal of Pain and Symptom Management has an interesting trial of adding midazolam to morphine to relieve dyspnea in dying cancer patients.

101 patients were randomized to one of three groups:  scheduled morphine with midazolam for breakthrough; scheduled midazolam with morphine breathrough; or scheduled morphine AND midazolam with morphine for breakthrough.  All drugs were given subcutaneously; doses and how they managed people who were previously on opioids etc. are spelled out in the abstract.  Data was collected for 48hours, which is pretty reasonable given these were dying patients & the goal here was for rapid/immediate dyspnea relief.  Results generally were solidly in favor of scheduled morphine plus midazolam and the scheduled midazolam only group fared the worst.  More patients in the combo group had dyspnea relief at 24 hours compared to the others (92% vs. 69% for scheduled morphine vs. 46% for scheduled midazolam); "breakthrough" dyspnea occured less in the combo group (non-significant trend).  All groups improved markedly on median dyspnea scores (from ~8/10 to ~2/10 at 48 hours).  This suggests 1) regression to the mean aside, all interventions were helpful, and 2) the benefit from the addition of scheduled midazolam is probably mostly in obtaining more immediate relief in a subset of patients early on.  Of note, the scheduled morphine group had significantly more 'clinically relevant toxicity' than the combo group.

Results aside, this is a remarkable study for several reasons, and it's great to see this sort of work being done.  This was a randomized trial of dying patients on a palliative ward (all had advanced cancer, ECOG performance status of 4, and life expectancies of <1 week), and had a decent n.  Unfortunately it was only single blinded although there didn't seem to be any methodologic reason why it had to be.  Additionally, it would have made a lot of sense to have a morphine ONLY group since that is, I suspect, the usual practice for many of us (I, personally, don't immediately reached for benzodiazepines especially if patients are doing well on opioids alone).  (Also, it is unclear to me how they used the data on those that died during the 48 hours of data collection--ignored it? used intention-to-treat analysis? used as much data as was collected?).  That aside I want to restate that this was a decently designed and executed study, with clinically useful findings, that was performed on the sickest patients imaginable--it can be done. 

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A brief post...

JAMA continues their "Perspectives on care at the close of life" series with an article on palliative care in post-acute settings (i.e. nursing homes and the like).  It's quite a good overview of the topic, and focuses on some of the frustrating regulatory problems.  Clearly, as the population ages, nursing home-like settings are going to become even more important 'venues' where palliative and terminal care are delivered.  One interesting model they talk about (I just discovered that this model is being implemented in my community in places) is embedding a 'hospice household' within a nursing home.  This 'household' has specially trained staff, comfort care plans, and family support integrated into it.

Also...
Another quick, basic science fix:

The Journal of Supportive Oncology has published a review on the pathophysiology & management of fever (JSO articles are available with a free online subscription).  Full of cytokines, pyrogens--things like that--if you're interested.

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I'm back home in a snowy Milwaukee from a drizzly Nashville & my inbox in overflowing with abstracts which I'll be slogging through in the next week.  Nashville was good.  Besides meeting many, many people my favorite part of the conference was Linda Ganzini's talk on who chooses physician assisted suicide in Oregon.  The answers were not shocking, and were in line with the Dutch euthanasia experience (to a large extent):  people who choose PAS do so out of a fear of loss of control, not from actual suffering from physical symptoms, intractable pain, etc.  I was particularly struck by something Dr. Ganzini said (I'm completely paraphrasing here): 

   'During interviews with these patients, they would often comment how they couldn't stand the idea of being a burden to their families.  Family members in the room would inevitably pipe in with "We've told him a hundred times that she's not going to be a burden but she won't believe us." These patients are unable to accept that the process of dying--of becoming disabled and dependent as they head towards death--and of being cared for through this by family, could be a meaningful, valuable experience.'

Brilliant.  I was struck while listening to this, though, about how different the media rhetoric about PAS is from the reality.  Even just last month, after the Supreme Court decision, when I was reading the newspaper and listening to the NPR coverage about the decision, I noticed that PAS is discussed in public by its advocates as an important option for those who are suffering terribly from a terminal illness.  That is technically true but misleading.  For most people that would mean intractable suffering from intractable physical symptoms (pain, dyspnea, etc.).  The reality is 'intractable suffering' from a fear of losing control at the end of life (or however you want to put it), not physical symptoms.  The problem here is that the subtext to all of this is a perpetuation of the myth that intractable physical suffering is common/to-be-expected at the end of life and that PAS is 'needed' as an option to solve this.  Stated otherwise: good hospice care and expert palliative care fails fails frequently enough to relieve physical symptoms that PAS is a 'needed' alternative.  Perpetuating this myth helps no one.  Additionally, I wonder if it would not serve the interests of PAS advocates if this 'news' came out; that people choosing PAS are doing it out of reasons of control, not symptoms.  Perhaps not, perhaps most people get the whole "death with dignity = control at any cost" business.

Enough of that.  Except one more thing:  Ganzini stated that, to her knowledge, no African-Americans or Hispanic patients had 'taken advantage' of Oregon's PAS system.  That's interesting.

There were of course many other great sessions & posters.  Maggots for wound care, that sort of stuff.  There was lots of talk about the transition from the ABHPM to the ABMS but I'll refer you to those sites and AAHPM's about that.

The well-organized, Christian-Sinclair-spear-headed Pallimed get-the-word-out-campaign seemed to be a success and we officially welcome any new readers to the blog--we hope you get something from it.  If not, leave angry comments.  That is not a joke, we want to blog to be valuable to our readers (within the purview of the mission statement mentioned up above on the webpage); so if it's not living up to that let us know.

Perhaps as a response to the Pallimed campaign Christian and I were asked a question about the difference between Pallimed and PC-FACS (the new one is out by the way ).  As I've said before on this blog, PC-FACS is clearly a project after our own hearts.  PC-FACS are peer reviewed critical summaries of important new pall-care-relevant literature. There's a process to them, and they are written and edited with an eye to concise interpretation--focused on relevance--for practicing palliative care practitioners (much like the ACP Journal Club or the Journal Watch publications).  Pallimed is an informal, idiosyncratic,  (but hopefully a mostly critical) gloss of what is these days the deluge of palliative-care-related publications coming from all quarters of the academe.  We review whatever tickles our fancy, including completely clinically irrelevant articles about gum chewing and pain.  Our goal, and this is perhaps the fundamental distinction between the goals of Pallimed and PC FACS, is that we want Pallimed to be a forum for discussion about pall-care-related literature as it comes out.  Many of us have our professional list-servs, and the Growth House and Palliative Drugs clinical forums for clinical questions; but to my knowledge there's no forum to discuss new literature.  Are we succeeding at this?   Not particularly.  We've (I've) sort of had a 'if you build it they will come' attitude to the blog but that hasn't worked very well; thus the outreach campaigns, etc.

Ok.  Enough meta.  I promise the days of self-absorbed, bloggerly reflection are over.  We shall get back to the business of blogging articles.  But do, if you wish, leave comments, send emails, challenge, suggest, amplify, and put us in our places.

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BMJ e-published this article on a meta-analysis of factors influencing location of death. (pdf here) This article made me think of two families I recently consulted on and how they came to their decisions regarding taking the patient home to die or staying in the hospital. There were many similarities to between the patients and families, same disease, same disease course, similar family structures with lots of support, same race and socioeconomic status, etc.

But the main difference between the two was their style of coping. One family was full of 'adapters' and 'do-ers' the other family was much more passive and hesitant to commit to anything. Obviously these factors would be very difficult to study, but since Kansas City Hospice (my organization) will be opening an inpatient hospice home in the next few months, it makes me wonder how the first inpatient facility in the Kansas City area will impact discharges from hospitals for patients with a prognosis of days. In my fellowship we had an inpatient facility called Kate B. Reynolds (after a heir of the RJ Reynolds company...hey it was Winston-Salem, NC after all), and I could not imagine what it must have been like without an inpatient facility as a discharge option, but since I have moved to KC it is pretty obvious. Many families, except the 'adapters' stay in the hospital with the patients until the patients die. All of this wandering commentary brings me to the important point of the article in the discussion section...

Actions to enable people to die at home should prioritise ways of empowering families and public education, balanced with a continuing effort to improve home based models of care (assuring intensive, sustained, and coordinated home care), early and continuous risk assessment, and training on palliative care not just for specialists but also for primary care professionals.

So with that in mind make sure to read my earlier post about contacting your legislator about Medicare Hospice cuts. Can't avoid deaths and crisis stays in the hospital if hospice agencies cannot supply the staff to assist families!

I have to comment that I really enjoy BMJ's format. A couple of key things stand out that I wish other major journals would adopt. One is the Summary box on 'What is already known on this topic' and 'What this study adds'. The other part is the very end after the acknowledgments where every article cites 1) funding; 2) competing interests; and 3) ethical approval. I always find that interesting reading.

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Now, I am not the first person to be a public policy advocate, because frankly I am not all that keen on numbers when it comes to finances; except for entering my credit card bills into Quicken and seeing if I am paying down any of my student loans from medical school (Get you loans paid by 2028! is my motto).

But for those interested in making more noise about this, J. Donald Schumacher, the president of the NHPCO issued a letter about President Bush's Proposed Budget and the fact that Medicare Funds for hospice will be cut by 0.4%. He goes on encourage hospice providers to "Tell Their Story" to their legislators. So if you are in contact with your senators (you have two) and representative (you have one) or have always thought about doing that, now is your chance. Get out there and rock the vote!

(And if you do please feel free to comment and let us know who you contacted.)

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The current Journal of the American Geriatrics Society has a review on the safety and efficacy of long-term atypical antipsychotic use for behavioral and psychiatric symptoms in advanced dementia.  Verdict:  1) there's only decent data for olanzapine and risperidone being efficacious (ie, there's not very much advocating quetiapine and aripiprazole), 2) risperidone and haloperidol seem to be equally efficacious in good quality head to head trials, 3) evidence that atypicals offer benefits side-effect wise over typicals is scant, and 4) yes vascular events and mortality are higher for atypicals compared to placebo.  Note that this study was more of a systematic, narrative review (not a metaanalysis) so no 'new' information is being presented here.  That, actually, is the article's strength: it's a clear and comprehensive assessment of some very confusing research, and is arranged in clinically meaningful sections (like "What Is the Relative Effectiveness and Safety of the Atypical Antipsychotics Compared with Each Other?" and "Are the Atypical Antipsychotics More Effective or Safer than the 'Typical' Antipsychotics?").  I appreciate that. 

(See these previous posts for more on this topic.)

Also presented in this issue--there's a new tool to look at the appropriateness of pain med prescription in nursing homes; nursing home residents with aspiration pneumonia causing hospitalization had a mortality of nearly 30% in a cohort in Alberta, Canada!; and--surprise!-- pneumonia is a common pre-terminal event in patients with advanced dementia (>50% will have pneumonia within 30 days of dying).

Finally:
"Beware the coercive orthodoxy of dying and mourning..."  A good quote from some of the comments about Christian's post on heparin (OK--most of the comments are from Christian and me, but the eloquent quotations and most reasoned discussion points aren't).  Nevertheless, these are the sorts of gems we'd all be treated to more of if Pallimed's readers would leave comments...

See you at AAHPM!

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Thanks to Drew's ingenuity Pallimed is now listed on Medlogs.com. For those of you who do not know about Medlogs.com it is an aggregator site for medically oriented blogs. Pretty good site for getting the first few bits of multiple different medical blogs to see if any of them catch your fancy.

We will also be making a publicity push at the Annual Assembly (AAHPM) for people who do not yet know about our site. (Look for our blue /green adverts!) We don't like to toot our own horn, but we do want to get the word out, because we want to share this info with as many people as possible to really push palliative medicine from anecdotal evidence to really backing up our actions and interventions (or withdrawal of interventions!) with research and evidence.

So if you are new from Medlogs.com or found us from our signs or talking to Drew or me at the Annual Assembly, then please leave a comment, tell us who you are, give us some feedback, or just browse around.

(No we are not on TV. Yet.)

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E-published by BMJ this week is an article (full text pdf) discussing the attitudes of 28 inpatients with advanced, incurable cancer admitted for spinal cord compression treatment or symptom control treatment. The authors used qualitative analysis and semi-structured interviews to see if patients felt any benefit from receiving low molecular weight heparin (LWMH) for DVT prophylaxis. All patients were ECOG 4 and most had good insight into the incurable nature of their cancer. They were all already on LMWH when interviewed and they all knew death could result from a DVT->PE. Most explained they could not see why they should not have it and saw it as just a routine part of their care. A few of my favorite quotes from a patient is this one (it helps to say with a British accent):

"...there’s nothing to it, you don’t feel it, and you’ve got to have ‘nasties’ to have ‘nices’ haven’t you?”

"I’d like to do a few things before I pop my clogs. I’ve got enough to worry about without having to worry about deep vein thrombosis.”

'Pop my clogs'...I gotta remember that one.

Most also expressed disgust at compression stockings, and would rather have the injections. I am glad the authors did this study as it does rock the boat of common wisdom in the palliative care community, namely one of always decreasing medication burden and limiting costs. Burden is a personal perception and some patients do see positives in continuing their statins, coumadin and LMWH. They did not extrapolate that every bed bound palliative/hospice patient at home should have LMWH, which would seem like a natural extension of the logic that all patients (not just inpatients) with advanced cancer have thromboembolism.

The major take home point I gleaned from this article is that (as always) it does not pay to assume what the patient sees as a burden, but rather to ask them for their insight.

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Since we live in a death denying culture, I always enjoy seeing mainstream discussion/depiction of the dying process and the importance it has in all of our lives. (Terminator movies notwithstanding) From the 'Stargazing' column on the front page of the entertainment section in my local Kansas City Star paper come these excellent insights about death from actress Emma Thompson. These comments stem from dealing with death in her new movie "Nanny McPhee" (No we don't do movie reviews here at Pallimed.)

"Children understand much better than we do that life and death exist together simultaneously. As we grow older and try to make sense of it all...our tectonic plates start to ossify and nothing shifts anymore. But children are always moving. They understand that sometimes death comes, and it can be like that. They're not angry about death. They're angry about no communication, no time and no listening to the really sensible things." (emphasis mine)

- Emma Thompson

I thought she was spot on and spoke to this topic very well. I wonder if it was from a personal experience. These words sound like they come from our Child/Teen Specialist at work.

AAHPM

I will be there Friday and Saturday at the conference as well and I am very excited about hosting the Fellows' Case Conference for the second year in a row. We have some really good cases, so hopefully some of you will be there. Say hello to Drew and I and help us get the word out about Pallimed. And I will not be at Ruths' Chris Steakhouse Friday night. I will be at the Grand Ole Opry!

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Three things:

1.
I happened upon a short, interesting review of the death rattle in Neurocritical Care from 2005. It focuses on the incidence and treatment of the death rattle in the ICU, as well as managing family distress regarding it. My response, somewhat counter to the focus of this hyoscine-for-everything-review, is that pre-education of family members prior to terminal extubations in the ICU is mandatory--focusing especially on warning them that abnormal breathing is to be expected and is not necessarily a sign of suffering.

2.
Lancet Oncology has published a nice review on the oral complications of radiotherapy. It covers the pathogenesis, prevention, and treatment of mucositis, xerostomia, osteoradionecrosis, and trismus. Like many articles in LO it seems quite enamored with basic science and less interested in practical, clinical information, but oh well. It does have some very nice photos and would make a good addition to one's teaching file.

3.
I'm going to be at the AAHPM conference in Nashville most of next week and imagine I won't be blogging much if at all. I am participating in the Fellows' Case Conference Friday afternoon (4:30-6pm; session #423). I will be discussing the management of hospice patients who have ongoing substance abuse problems. It will rock your world. Seriously though--there are some fantastic sounding sessions occurring concurrently, that will probably rock your world more, but what can I do? Come up and say Hi if you want. I have a sneaking suspicion Christian will be there too, if he's not too busy cavorting with drug reps.