Thursday, July 7, 2016
Well, I've been practicing palliative medicine for 10 years - 11 including my fellowship. So I feel like maybe I can take off my young turk hat, and put on my grumpy old man socks (I'm looking at you Bob Arnold and David Weissman) and start complaining.
What I wanted to complain about is the use of euphemistic, moralistic, and/or confusing terminology in our field, to describe our clinical work, and suggest we'd all be better off if we just said what we mean, as cleanly as possible. All of medicine has this problem, but palliative care you are my tribe, so this is what I'm going to complain about today and over the next four weeks.
During my training, I quickly got taught to avoid damaging, inaccurate, or inflammatory/scary phrases like "withdrawing care," "terminal sedation," "there's nothing more we can do," "pull the plug." So I stopped using them (although I'll note I have patients or families say the latter two to me all the time as they describe what they are deciding or what's happening). However we've got plenty of our own euphemisms in palliative care, although none as horrid as 'withdrawing care'.
This will be a 4 part-er and discuss 'comfort care,' 'compassionate extubation,' 'palliative sedation,' and 'assisted death.' I appreciate perhaps all this is a little cranky, and look forward to readers' responses, push-back, alternatives, etc. Sharpen your quill. In particular, if someone can counter-propose a non-euphemistic-but-as-nearly-parsimonious alternative, let us know. I'm not going to talk about 'serious illness,' because I don't know quite what I'd say, but I appreciate it has its problems. I don't think it's as egregiously messed as 'palliative sedation' or the others, however.
I need to acknowledge that all language is 'loaded', full of multiple meaning/connotations, historical context, etc - I get that - I'm arguing however as much as we have a choice to be clearer/more accurate/more transparent we should do so. I also appreciate that some of these terms are used as a sort of argot, an in-group short-hand ('we all know what we are talking about'), and that's fine I guess, but I still think we (in medicine, in healthcare, in life) should collectively try to err on saying-what-we-mean-clearly, as much as we can. Certainly, if we're using an argot, it should never be used in front of patients. Let the politicians have their double-talk, we're better than that.
So, grumpy socks on.
"Comfort care." "Comfort measures." Ok, I'm starting with an example that's just going to prove to you that I'm just being grumpy and vapid, because this is the one term of the 4 that I still use (in discussion with other healthcare professionals), because it is widely recognized amongst us healthcare professionals, and replacing it with the huge mouthful of 'a plan of care in a patient who is dying in which the goals of care are to prevent and alleviate suffering but not to prolong life/the dying process' is irksome, and runs the risk of the people who you're talking with deciding you're a pompous jackass.
So, yes, I say it, but only internally, I treat it as jargon, dirty, dirty jargon never to be spoken in the presence of patients/families.
My problems with it are two-fold.
One, it amplifies the already irksome and unnecessary dichotomy we have set up in medicine between 'cure' and 'comfort.' I'm no fool, I know sometimes there really is such a dichotomy, you can't have one without the other, but if remember from palliative care 101 eleven years ago, what we are trying to do in palliative care is to reduce the gap between the two, to help our patients feel better as they live longer. This is what the whole 'upstream' 'concurrent' palliative care idea is about, right? So I don't like reinforcing that chasm. Someone on one of my teams years ago starting saying 'comfort measures only' (for all I know this language has been widespread for years, I don't remember it however prior to the late 2000s), to underline the idea that *all* our patients should be receiving comfort measures; and for most of our patients who are imminently dying, the plan adjusts such that 'comfort measures' are all they are receiving, medically. "CMO" remains a commonly used, in-house argot
Two, it's confusing for patients and should never be said in front of them. I've seen it lead to stupid miscommunication many times. Like someone asking a patient 'Do you want comfort care?' 'Do you want us to focus on keeping you comfortable?' and the patient saying 'Yes of course' not realizing that the clinician was actually saying 'Should we stop efforts to prolong your life and *only* provide ongoing interventions to alleviate symptoms/provide comfort?' It's kind of like the infamous consult we've all had where it's like 'the patient wants hospice care please help arrange that' and you get there and find out the patient was asked something along the lines of 'Do you want to go home?' 'Do you want support at home to keep comfortable?' and of course the patient wants this, who the hell doesn't, but it was never actually explained to them that hospice implies discontinuing life-prolonging treatments, and not coming back to the hospital for 'aggressive measures.' (I know, I know, not always, there is some nuance here, but this is basically what enrolling in hospice implies.) Friends who work in hospice - these patients are enrolled all the time, right, and you go visit them and realize they have no clue what they just signed up for? They thought they were signing up for help being comfortable, and people coming to visit them at home, but not discontinuing active attempts to keep them alive.
Drew Rosielle, MD is a palliative care physician at University of Minnesota Health in Minnesota. He founded Pallimed in 2005. For more Pallimed posts by Drew click here.
Illustration Credit: Christian Sinclair CC-BY-SA-NC