Language Matters.
And misuse of language and misperception is a Major threat to us.
What was the misperception:
We are death panels and rationing
and it was in the eyes of Professionals(our colleagues, the public, AND Policy Makers
One implication of this: a grant was all but funded, had to be vetted in a Politicos office due to the source: the result, No $ because Palliative Care (PC) in the title
How big an issue is this: Diane Meier couldn’t get an interview for one committee because in the words of the staff office “Palliative Care is radioactive!”
we have a huge branding problem
What language led to this debacle: from the original “death Panel” bill
Section e. “an explanation by the practitioner of the continuum of end-of-life services and supports available.”
The result, former NY Lt Gov. Betsy McCaughey found the gotcha sound bite. “congress makes it mandatory to have counseling session that will tell them how to end life sooner, how to decline nutrition”
and ultimately Sarah Palin’s response on FACEBOOK “ my Down’s syndrome baby will have to stand in front of Obama’s “death panel”8/7/09
Language is really important.
Everything is about “OPTICS” . How does it look. We as PC were bad optics because we have not been trained about how we communicate. Papers that talk about EOL care, or terminal became “radioactive.”
The ultimate impact: adv care planning, nih funding, quality measures, hospital accreditation , gme funding for fellowship loan forgiveness all removed from HC reform bills due to slippery language.
We must communicate who we are and what we do to pt and family.
Diane emphasizes:
our Language needs to focus on the needs of audience.
What is it we fundamentally do: we match treatment to patient goals.
EOL misrepresents the purpose of pc. we match treatment to patient goals.
If we want to help pts and families who need us, we cannot force them to 1st agree they are dying.
we match treatment to patient goals.
(Hmm, she made that point 3 times in Bold, I guess it’s important!)
Paul Tatum
i agree that language is important, and that to an extent, language has been an albatross impeding the progress of pallaitive care. but is it really that we are misusing the language, or that society, the media, the health care professions are misunderstanding our language? in truth, most of what is done in palliative care, and especially in hospice, truly is end of life care and care for the dying. for this, we should be proud. indeed palliative care is more than that of course, and thank goodness for that. but it is A LOT more than symptom management and goals of care discussion in people with advanced chronic illness. to surgically resect the compassionate and expert care of the dying from our language is to minimize and belittle the majority, truthfully, of what we all do. we do need to broaden our language and be precise about our language, but i would argue we should not eliminate the very important, authentic, and truthful aspect of caring for those who we can help live well til they die and then die well. we as a community that is half hospice providers need to talk more about this language issue.
Great point by Clay. I can see the merit to both sides. Let us not forget that there is more than one legitimate perspective as we move forward in our education of the public and politicians. No matter how flat the pancake is, it still has two sides. 🙂
What we are being asked for by Dr. M. is essentially denial: denial that care for the dying is central to our mission in this case. Most of the patients I see in palliative care consultations are dead within weeks. My referrals to hospice generally turn out to have brief stays, and, frankly, are dreaded by hospice RNs, though they appreciate the clarity of my documentation, particularly around the goals of care.
There are “slow deaths” among those, but I think the more appropriate label would be “slow, expensive deaths.” The public revulsion at “Death Panels” and “Death Taxes” requires more than a turning away from reality; it requires education, not “re-branding.” I am proud of what I do to care for the dying and advocate that we continue to call a spade by its proper name.