Thursday, July 23, 2009
Improving Palliative Care in the ED
Annals of Emergency Medicine has a couple of related articles about palliative care in the ED.
First is a general discussion about PC in the ED, it's kind of a 'palliative care 101' for ED clinicians and talks about how pc skills are important in the ED setting. It also discusses HPM board certification for emergency medicine physicians.
The other article is a qualitative research study about the experiences and attitudes of emergency department clinicians about providing palliative care and EOL care in the ED. The study involved focus groups of clinicians (docs, nurses, social workers, and techs; n=26; 54% docs including residents) from 2 academic EDs in Boston, and used open ended questions about experiences with, understanding of, and attitudes towards EOL and palliative care in the ED setting.
The results are revealing, and describe deep concerns and frustrations and feelings of clinical inadequacy in these situations: lack of training in symptom management, prognostication, and communication; uncertainty about how to address conflict/unclear goals in an emergency setting; major frustration with outpatient providers about not addressing EOL care/goals/issues/treatment limitations prior to a patient's presentation as well as with systems issues to do with documentation of treatment preferences/DNR orders etc. (sort of stuff that the POLST paradigm in particular is designed to address; still requires however someone to do that prior to a patient showing up in extremis in an ED).
That last issue in particular is one that I've heard from a lot of EM physicians. Clearly the ED is the worst imaginable place to have these conversations/make these decisions. By necessity, however, it is sometimes the right place to have those discussions, but the general sense is that the providers feel not only resentment about having to do it but inadequacy. One doc noted that they find themselves second guessing what they're doing because it is so inconceivable to them that no one else had had these conversations before: “Having these conversations in the ED causes a lot of consternation. I wonder, ‘Am I doing the right thing by this person? Why hasn't somebody else talked to this person about it? Why does it come to me to end up talking to this person?'” The context presented by the first paper (discussing palliative competencies necessary for ED providers, etc.) is obviously some part of the solution but it won't change the larger/deeper issues of these conversations generally happening too late.
One last intriguing discussion in the paper is about the ED providers' reaction to hearing a definition of 'palliative care.' The definition they were provided seems to be standard WHO-ish language: 'The goal of palliative care is to prevent and relieve suffering and to support the best possible quality of life for patients and their families, regardless of the stage of the disease or the need for other therapies. Palliative care can be delivered at the same time as life-prolonging care or as the main focus of care. Palliative care is achieved through effective management of pain and other distressing symptoms, while incorporating psychosocial and spiritual care according to patient/family needs, values, beliefs and culture(s).' They mention some were surprised about palliative care not necessarily implying EOL care, but also this:
Several providers (2 attending physicians, 3 residents, 2 nurses, and 1 social worker) expressed frustration that the structured definition of palliative care seemed too broad to be clinically useful. One provider noted, “This seems more of a definition of what good emergency care should be at any given stage than specific for palliative care.”Or, in fact, what good medical care in general should entail. I couldn't agree more, and this brings up again discussions we've had on the blog before about major problems we have as a professional community about defining what we do, particularly as we define it away from (or at least more broadly than) EOL care. People 'get' the EOL care aspect. When I told my mother what palliative care was years ago her initial reaction was something like Isn't that what all doctors should do? Obviously, hell yes, absolutely, but then I started trying to describe what palliative specialists do and had a hard time. It's tough defining succinctly, without taking up a whole paragraph, what it is that specialist PC clinicians/teams do (outside of hospice-specific settings). I think this is a real problem because clinicians/clinical services which aren't used to specialist PC, don't 'get it' or whatever (see for instance last week's post about CHf), how are they supposed to understand what we do such that they know when/how/why to involve us. Especially because they read that definition and say to themselves Well I do that (or at least I know I should be doing that). And of course you could argue that 'they' often don't do that very well, or don't realize that it could be done much better, but that's not very, umm, collegial. Of course most clinicians don't have a problem consulting other specialists when they feel like they need help, which makes me wonder if the major problem is a lack of appreciation of what meticulous, patient-centered symptom management and communication actually looks like.
Anyway: my challenge for anyone reading this is to share your 1 sentence description of what specialist palliative care means and/or why it is needed? Or at least short description, if not 1 sentence.
13 Responses to “Improving Palliative Care in the ED”
July 24, 2009
I tell the medical students in my orientation to palliative care lecture that when you boil it down, palliative medicine is a subspecialty of medicine that deals with informed consent and symptom management. If I'm then allowed to add another sentence for clarification, then I'd specify that true informed consent requires honest discussions about one's health status at present and prognosis for the future along with informing patient's of different alternatives to care.
I agree, the necessity of these skills isn't unique to quality palliative care. To be a good doctor in any specialty you should be good at symptom management and informed consent. But I think these issues are so important to patients and our construct of what good western medical care is, that it obligated the health system in place to create a subspecialty dealing with these skills.
July 25, 2009
Palliative medicine is listening to the patient and then helping to ease/understand/eliminate/etc whatever concerns the patient has.
July 27, 2009
Palliative medicine is a specialty that takes as its primary task the relief of suffering as experienced by medical patients and their loved ones.
This I think, sufficiently limits the scope of concern, i.e. the focus is not all suffering in the world. While other specialties might claim that relief of suffering is within their scope--and I hope they would--it is certainly not their primary focus. Think of this definition as opposed to, say, one in which the primary task is the diagnosis and treatment of disease relating to the cardiovascular system (cardiology) or the gut (GI) or the skin (derm), etc. Or for that matter the rapid diagnosis and stabilization of acute and emergent medical conditions (EM) or the diagnosis and treatment of acute and chronic medical conditions across the lifespan (family medicine).
July 28, 2009
I do palliative care in a small community hospital and what we do is often determined by what our referring docs perceive us to do. for example, we often use opioids for our end of life/hospice patients and are seen as the "pain experts". so we often get consult requests for pain management: post-op pts or ortho pts, etc. we often get called to see drug-seeking patients, many of whom are young and otherwise healthy, because we use opioids and therefore are seen as the pain & addiction service.
Personally, I always feel a little uncomfortable seeing these patients especially the addicts since this isnt what I was trained to do and I feel it is beyond the scope of our practice. but in a small community setting, you want to keep your referral base happy and you dont turn down these consults.
July 28, 2009
I often define Palliative Medicine as the medical specialty with expertise in symtom management and clarification of goals of care, often in patients with advanced and complex illnesses and especially in the context of difficult and conflicted family dynamics.
The idea of "expertise" identifies the field from the more general idea of good medical care; the somewhat vague but poigniant term "goals of care" encompasses informed consent, burden and benefit of therapies, quantity and quality of life issues, and importantly the necessary elements of medical opinion and patient values.
And as Anonymous alludes to in his comment, if we don't more clearly identify our field, others (will less info and perhaps a different agenda) will.
July 29, 2009
I also have a hard time explaining what i do in a few words,but here is what i usually end up saying:
Palliative Care is a unique and comprehensive approach to medical care whose primary focus is to identify and understand each individual's realistic needs and perception of what constitutes
quality of life for them and help achieve it by our medical expertise.
July 29, 2009
Thanks all for your comments and examples. On various days I use some variations of each of those themes, but still am struck by how labored and vague the language is often.
I think us in the field know what we mean when we say these things, know what it means on a day to day practice basis, but I still wonder if anyone else (clinicians unfamiliar with pall care or patients) would say anything other than - You do what now? I.e. still needs a paragraph of explanation. I'm not convinced it can be done with less than that.... Feel free to challenge me on this as I hope I'm wrong.
Anon - if it makes you feel any better (and while it is highly institution dependent) a lot of palliative clinicians are seeing patients with addiction/substance abuse problems (with or without life-limiting illnesses). And many of us don't have solid, formal training in this. I personally am wondering if it should be a more prominent part of our fellowship competencies as in the real world, we see these patients.
August 03, 2009
To be sure, our specialty often leaves patients, families and our colleagues wondering-"exactly what do you do?"
My answer is always this:
I specialize in dealing with the answer to these 2 questions:
1. What is causing you to suffer the most (or sometimes I ask-what is bothering you the most)?
and
2. What do you want most in this world (for yourself and for your family)?
The answer to those two questions guides everything I do.
August 06, 2009
Very interesting descriptions of how each person describes definition of palliative care! No wonder the general public has no clue what it is. I loved Sean Mark's comments about informed consent...we totally miss the mark on this. To me palliative care is aggressive managment of unpleasant symptoms associated with a chronic disease. Letting the pt. name those unpleasant symptoms is key for me. After reading the posts I'm thinking i need to broden my definition and thinking on what palliative care is.
August 06, 2009
LS & HospiceLCSW: thanks for your comments. I still am not sure if that gets us to a concise/succinct way of explaining what we do to other clinicians (those ED docs for instance). I'm not criticizing: I can't come up with a succinct alternative myself! I like Sean's focus on informed consent - (Sean you rock! [We work together]) but I still wonder if other clinicians know what we mean when we say that as many conceptualize that as procedural informed consent, and not the Real Informed Consent as argued for in these Fast Facts:
http://www.eperc.mcw.edu/fastFact/ff_164.htm
http://www.eperc.mcw.edu/fastFact/ff_165.htm
September 02, 2009
We recently had a departmental dialog about this very issue. Here is one calibrated view that intentionally does use the D-word :
Palliative Medicine Consultation Team provides comprehensive, interdisciplinary care for patients with advanced, progressive, life-threatening illnesses and their families, genuinely willing to dialog about transitioning toward dying. In addition, Palliative Medicine firmly offers specialized mediating and counseling expertise to patients, families and medical providers under circumstances of complex and challenging clinical communication, primarily when conflict about goals and plans of care is present or likely to occur.
We aim to help these (!) patients and their families achieve the best possible quality of life throughout the course of an acknowledged life-threatening illness by preventing and relieving suffering, controlling symptoms, negotiating conflict and providing psychosocial support.
What does Palliative Medicine provide?
• controlling pain and non-pain symptoms
• bearing with the patient’s and family’s distress through mindful presence, trust and respectful physician-patient relationship
• responding to spiritual and psychological burdens of patients and care-givers to life-threatening illness and loss, including bereavement
• preparing patient and family for the dying process and for death, when it is anticipated, insofar as they desire to be prepared
• mediating assistance for domestic and practical needs - insofar as core physician expertise is required
• Coordination of care across settings (primarily hospice) - insofar as core physician expertise is required
What Palliative Medicine IS NOT:
o Geriatric care of elderly, chronically ill patients without definable, life-threatening illnesses
o Chronic non-malignant pain service
o A substitute for specialty care for patients with definable life-threatening illnesses who nevertheless wish to proceed with restorative care and do NOT wish to dialog about their life-threatening illness and transitions
o Hospital-based (hospitalist) care of “difficult” patients with chronic conditions requiring prolonged, intermediate level medical attention
o Case management,
o Discharge and/or dictation service
o Routine care coordination service
o Transition (outpatient F/U from acute hospitalization) service
o “Withdrawal of support” service
o Non-controversial extubation service
o Speaking in English to patients service
o Non-controversial informed consent service
September 09, 2009
@Anon 9/2.
Whew.
That's as good a summary of consultative palliative medicine that i've ever read, and I guess proves my point, which I was hoping to have disproved, that it takes a paragraph to say what we do.
Re: what palliative care is not - is that actually something you promulgate locally? while i laughed reading it, and know oh so well exactly what you mean (the speaking in english to patients service), it doesn't seem like friendly marketing material. so, have you really done this and what was the reaction?
September 09, 2009
I like what Anon said to and was thinking of elevating it to a featured comment and giving it an original post.
I wasn't sure how to follow up to it! Thanks Drew!
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