Studies show that when people know what palliative care is, they want it. Marketing genius Seth Godin talks about offering services that are “remarkable” — so good that a person would cross the street to tell a friend.
Palliative care has that kind of value, so why doesn’t our message travel upstream through word of mouth? Would-be evangelists are often flummoxed by the fact that the phrase has still has different meanings depending on context, and recognizing and navigating that ambiguity is difficult. Therein lies a cruel reality — our message isn’t spreading well specifically among the folks who struggle with communication.
In empathy for exhausted palliative care evangelists everywhere, I’ve noted a few of the semantic rules that make upstream messaging a challenge, on top of all of the other challenges:
1. Thou shalt not say that palliative care delivered to a dying patient who has stopped disease-directed treatment is palliative care. This is to be called “comfort care.” And if you ever utter the phrase “withdraw care,” a pox shall fall upon your house.
2. Thou shalt not call “comfort care” “hospice” even if it appears identical to hospice. This is even worse than calling it palliative care, even though both comfort care and hospice are part of palliative care.
3. Thou shalt not call hospice “palliative care” even though it is a system designed to deliver palliative care.
4. Thou shalt not call palliative care interventions by a non-specialist “palliative care” unless there are no palliative care specialists in a 10-mile radius, in which case thou can. Thou shalt not call “palliative radiation” or “palliative chemotherapy” palliative care because in that context anything non-curative can be called palliative.
5. Thou shalt know the difference between primary, secondary and tertiary palliative care and that we are a medical specialty. Somehow, neurology never had to cover this stuff in an academic paper, but here we are.
6. Thou mayest substitute “supportive” for “palliative” as a descriptor in the context of secondary palliative care, but thou may not use it to describe hospice, comfort care or radiation/chemotherapy — only some types of undergarments. Thou will still use “palliative care” to describe the service anyway — otherwise, people looking for palliative care can’t find it.
7. Thou shalt read the mind of the person thou wants to refer or “educate” about palliative care to avoid blindsiding them in case they only heard of it in terms of patients receiving exclusively palliative care — i.e., at the end of life — or patronizing them. There is a chance they will feel patronized even if they don’t fully get it.
8. Thou shalt consider changing the name only to realize all of the other options are worse.
9. Thou shalt not get me started on coding and billing terms related to palliative care or differences in how the term is used in other cultures.
10. Thou shalt not call people receiving exclusively palliative care “palliative care patients” nor shalt thou call people receiving palliative care consultation services “palliative care patients” because the term is either a synonym for “comfort care” or an antonym for “comfort care” depending on context.
What would you add?
Instead of going viral, do you ever feel that the message spreads more like leprosy — incredibly slowly and with persistent social stigma? Have you watched conflict arise because you or a colleague got caught in polysemantic ambiguity?
Karen Knops is a palliative care physician.
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