Friday, July 17, 2009
As a change of pace, and for some lighter July reading: some academic all-star wrestling about palliative care & CHF....
Social Sciences & Medicine has a series of articles about problems with the interface of specialist palliative care with cardiology for heart failure patients (main article here; commentary here; rebuttal of commentary here).
If you're interested in palliative care for patients with CHF, or if you are an armchair sociologist, you'll find these interesting reading. (I'm the first; I fled all things that smelled like fanciful theorizin' after I left college, but I read the main article - which was written by sociologists - with some nostalgia.) For those of us unwashed by social theory (or washed then cleansed), the main article is a bizarre read and difficult to figure out exactly what is being said (at its core it involves an analysis of interviews done with CHF and palliative clinicians about the challenges in providing 'palliative care' for patients with heart failure). I thought at first it was written by clinicians, then after a few paragraphs figured it couldn't be - then read the rest of the lengthy opening section asking myself Have these people even ever seen a patient? Then they quote from interviews with clinicians (cardiologists, heart failure and palliative nurses, palliative docs) and my response was: 'Oh, these issues and concerns are very familiar to me...well said ma'am...yes, that is a frequent challenge....etc. etc.' and you ask yourself Is this what they've been trying to say?
If you read the commentary (written by cardiology and palliative clinicians) and then the rebuttal/reply to the commentary (by the main authors) you wonder if the real problem is that we're speaking completely different languages, and the main author's overly 'fanciful' (to my brutish clinician's ears) statement of their case (see some examples below) is just too obtuse for us clinicians.
Regarding my difficulty understanding where the main article authors are coming from, for instance, there's a lot of mention about how apparently 'open awareness' of death is a uniformly lauded goal of palliative care, etc. and so it's a problem with CHF patients since so many of them die abruptly. In addition, some of the language seems like fighting words, particularly if you're a palliative clinician. From the abstract:
This paper explores the continuities and discontinuities in recent policy on the extension of palliative care to people with heart failure in the UK. It focuses on how professionals in cardiology and specialist palliative care negotiate their disciplinary boundaries within the context of these policy moves. It draws out the semantic, historical and practical tensions between the core values of cardiology, with its focus on ‘living with heart failure’, and specialist palliative medicine, with its focus on ‘dying with heart failure’.(Don't let 'it's about how you live' NHPCO know they said that.)
As another example of how you read this and ask yourself what are they talking about: at one point they talk about how prognostication and therefore advance care planning is challenging in CHF (compared to cancer):
Heart failure implies an uncertain disease trajectory with slow decline intertwined with sudden acute episodes resulting in hospitalisation, where 30–50% of people might die suddenly, without an opportunity for a discussion and planning of an Advanced Care Plan....I read that and say to myself 1) seems like in fact plenty of time for ACP ('slow decline') and 2) uncertainty about time and circumstances for death and possibility of sudden decline/death without warning is in fact a strong argument for the importance of ACP. If we could foresee everything perfectly ACP would be less important.
Anyway, the core of the authors' message seems to be that palliative care is based on a cancer model of relatively predictable death which allows patients/clinicians to predict, plan, change treatment goals, and then we can all encourage patients to embrace death with 'open awareness.' While that's a highly idealized version of reality, and while I think I missed the lecture entitled 'Helping Our Patients Embrace Death With Open Awareness' during my fellowship, fair enough. CHF with its less certain disease courses, more difficult prognostication, decent chance of 'sudden death' (although if you have advanced heart failure and then have an arrest is that really 'sudden death,' really so unexpected?) doesn't fit the cancer model too well.
The interviews with clinicians talk about what you'd expect: the different specialist services at times not understanding what the others do, each having different competencies and priorities, struggling with the well-documented breakdown of any clear distinction between 'comfort' treatments and disease-modifying treatments in CHF, not knowing when someone is dying, variable treatment courses, concerns with frightening patients by talking too frankly with them about prognosis especially as we are often wrong, etc., etc. I think most of us who read this will be familiar and sympathetic to these issues, which are not restricted to the PC-CHF interface - they're all over the place - and relatively unremarkable as far as that goes.
Unremarkable, but important, and I view the important clinical challenge of these issues as a major argument for the need for specialist palliative services for patients with CHF, and why palliative care 'competencies' are uniquely helpful: sorting these things out - as well as they can be sorted out - is kinda what we do.
Anyway, the commentary is more or less a 'WTF? There is a need for specialist palliative care for CHF patients and it works pretty well!' statement.
The counter commentary suggests the physician-authors of the commentary are ignorant and don't understand the social theory & analysis in the main paper. For us armchair intellectuals the whole thing comes off as a feisty academic squabble about fancy words.
In sum, two worlds colliding, although not palliative care and cardiology but medicine and sociology. Or, just to annoy those of you already annoyed by these remarks: two disciplines separated by a common language.
Thanks to Dr. Bob Arnold for alerting me to these.