Thread by @DrJRubenstein

Once again the conversation has started about whether we should change the name “palliative care.”

I appreciate the rationale including points made in a recent @washingtonpost article.

Allow me to present a counterpoint.

A 🧵, with videos:

#hapc #pedpc #MedEd #scicomm

1/

Yes, fear of palliative care comes from an association in some people’s minds with death.

As many including @SoniaMKhunkhun @anandiyermd @ctsinclair have pointed out, that is likely a failure of education and due to a cultural fear of death itself, not palliative care.

2/

When we conflate the scary thing with something that can help with the scary thing we risk missing a big opportunity for support.

As I’ve said before, it’s like confusing the fire with the fire department:

3/

Understandably, people are afraid of death. If we change the name #PalliativeCare without addressing this stigma, people will start to conflate whatever the new name is with the old stigma and we’ll be back where we started. As @cczodonnell said.

4/

Before we go on, let’s take a step back to our original question:

❓ARE people afraid of #PalliativeCare.

A recent @washingtonpost article highlighted a study about public perception of palliative care:

5/

pubmed.ncbi.nlm.nih.gov/32614634/

Data cited from this article included that people aware of palliative care “often conflated it with end-of-life care.”

This study also found that 70% of people reported no awareness of palliative care.

❗️What a great opportunity for education!

6/

Another finding from this study that was not discussed in the WaPo piece was that “after being prompted with a tested definition, 95% rated palliative care favorably.”

‼️ 95% ‼️

Do 95% of people rate something they’re scared of favorably?!?!

7/

It seems that once people hear a brief explanation of palliative care, not only are they not afraid, but they overwhelmingly feel good about it!

So where is this projected “fear” coming from?

To put it another way:

8/

Also, we spend a lot of time talking about what palliative is NOT. Like “we’re NOT the same as hospice.”

What’s so bad about hospice? Hospice is amazing!

And nobody makes hospice cool like @bjmillermd and the folks at @zencaregivingsf.

9/

zencaregiving.org

Why don’t we focus on what #PalliativeCare IS?

✅It’s person-centered care that prioritizes quality of life at any stage of illness.

And it’s fantastic!

Look no further than the writing of @drkathrynmannix @SunitaPuriMD @IraByock and the work of @ShoshUMD @endwellproject

10/

So rather than continue to wring our hands about whether or not we should change our name, why don’t we just keep doing what we do best:

Taking amazing care of people and educating along the way.

That’s my plan.
I remain,
Proudly Palliative

#ProudlyPalliative

End 🧵