From Pallimed blog: http://bit.ly/hYK14G
Jim Siegel said...
Christian -- Thanks much for this post and raising the question about the term "non-hospice palliative care.” From my marketing & communications perspective, I shy away from saying what something is not, because it reminds people more of “the not" and thus can be counterproductive. However, since so many health care professionals think palliative care and hospice care are synonymous, and almost everyone in the general public that I speak to about it thinks that as well, the directness of the expression is intriguing, because it attacks the misperception head on. Since superb communicator Diane uses the term, that sure is an endorsement. Also, you mention the palliative care elevator pitch, and in case this is useful for Pallimed readers, here’s the elevator pitch that we’ve adopted here at HealthCare Chaplaincy: “Palliative care matches patient wishes to treatment goals and reduces suffering.” PS. The cloud is one cool visual and thanks for the link to Wordle.
March 07, 2011
Larry Boggeln, MD said...
I like "non-hospice palliative care" for the same reason..attacking misperception directly. Nice succinct elevator pitch. I personally would amend it slightly, such as "Palliative Care is a medical specialty that reduces suffering through an interdisciplinary team, focusing on patient-identified treatment goals."
March 07, 2011
Lisa Morgan said...
Thanks for raising the language issue. The term non-hospice palliative care is a term that CAPC effectively used early on with clinical audiences (not patient/family) that didn't know palliative care could be provided upstream. I would not necessarily recommend that the term be used with patients/families/general public. Jim is correct to point out the problematic nature of defining something by what it is not. The palliative care field faces a communications challenge in this respect. Upstream patients and families who confuse palliative care and hospice do respond to being told bluntly that the two are different. This is because the explanation addresses a direct question already in their minds. Referring clinicians have told us that this directness is very helpful. However, people who don't know what palliative care is at all can become confused. CAPC is currently in the process of conducting major public opinion and messaging research that will help guide our definitions and messages now and into the future. Stay tuned later this spring!
March 07, 2011
Jim Siegel said...
Lisa and Larry -- Thanks for the helpful feedback. That CAPC is conducting major public opinion and messaging research to help develop definitions and messages is hugely valuable and another instance where CAPC is taking the lead in a vital area. I like the amended elevator pitch, but I think that works more for the professional audience than the public audience. I recognize that I was not clear that the general public is the target of the elevator pitch that I cited. A second talking point that we do make is that palliative care is delivered by a transdisciplinary team that includes physicians, nurses, professional chaplains, social workers, and others. Your thoughts?
March 07, 2011
Drew Rosielle MD said...
Lisa thanks for the history of the phrase - yes it makes sense as a short-cut way of talking with other clinicians/health professionals/hospital administrators, but not families.
I've said on the blog before, and won't pass up this opportunity again, that I think we suffer as a community due to lack of any sort of accurate, non-euphemistic (you start throwing around 'quality of life' and people start thinking about support groups and wigs for cancer survivors...not that there's anything wrong with that), and very succinct (one sentence) way of describing to lay people what we do in palliative care. And in a way that wouldn't lead my mother to respond 'Isn't that what all doctors do?'
Christian, you didn't exactly say this, but I wonder if you are concerned the phrase stigmatizes hospice. While we need to, absolutely de-link ourselves from being connected solely to EOL care, it's also true that hospice care, as a whole, provides immaculate care which promotes quality of life, alleviates suffering, supports patients & families emotionally, and is aligned with care goals (usually, b/c if it wasn't then they'd likely not be in hospice). The only problem, you know, is that hospice is, b/c Medicare made it so, for people at life's end. It's like 'we're not for dying people - hospice is - not that there's anything wrong with that.'
Anyway, despite my longing for a non-euphemistic sentence I have found that, at the bed side, you can usually help people understand in a few sentences, tailored to what the consult reason is, and that from a practical standpoint I have a MUCH more difficult time helping patients understand the difference between an hospital-based palliative consult service which also runs clinics and home based palliative care programs. Eats up a lot of time at times.
I'll also say that I usually tell patients I see as a consultant, straight up, b/c I figure many of them are worried about it, that we do take care of a lot of people who are dying, make sure they're comfortable and in the place they want to be, help them figure out when it's time for hospice care, etc., and that's a role we play in the institution, although that's not why Dr. XYZ asked us to see you today. I may be oblivious to the effects of this, but I haven't noticed any major problems, and even for patients who completely aren't ready to 'go there,' I've signalled to them, from the beginning, that we're a team who is comfortable going there and it's a safe topic in our presence. I think it helps down the road, and half the time anyway patients are so terrified of this, to have the door opened to talk about it, in a safe and less threatening manner (ie framed as this is something our team does for some patients so we can talk about it hypothetically here, not this is something that your pulmonologist thought was so urgent that she wanted us to talk with you, NOW, about your death), allows them to begin to discuss what they worry the most about. So, for the most part, I think it helps us to foreground, a little, our expertise and confidence in providing excellent EOL care, not hide from it. Of course these are already patients who have agreed to see us, referred to us by people who understand what we do....
March 07, 2011
Earl Quijada said...
I’m not a fan of the phrase “non-hospice palliative care”. I first heard it used at AAHPM 2010 Boston by Diane Meier in context of “improving optics” on Capitol Hill as anything with “death”, “end of life” etc...immediately produces a lightening rod for controversy. I don’t remember the phrase being discussed in context of describing palliative care to colleagues or patients and families. I don’t imagine that if “non-hospice palliative care” were used that it would be contained in whatever intended silo. So that said, it will get to the patient and it does stigmatize hospice. In my opinion, it minimizes what we do best, end of life care. I don’t think Balfour Mount coined palliative care to “cloak” the death part.
That being said, of course I don’t think we should be passing out death cards. Our expertise lies in knowing how to handle this part of life in the context of each individual’s narrative. I don’t think there is a non-euphemistic phrase to describe what we do. Do we clinically need one and do all specialties have one? I don’t think we need one clinically and if we’re trying to create a phrase for someone other than patients/families it’s almost as if we’re trying to justify something.
If we were to use a phrase, I prefer something morally neutral like Advance Illness Management (AIM) that Brad Stuart uses. Phrases with “quality”, “relieve suffering”, and even “matching preferences” to me can sometimes create a tone that we’re doing something that someone ought to be doing but isn’t (bad bad).
No comments:
Post a Comment