Marian Grant DNP RN FAAN
The recent coverage of President Carter’s decision to seek hospice care was both sad news and an opportunity for the public to learn more about this type of care and insurance benefit — and for us to learn about messaging.
The Problem
In their coverage of Carter’s decision, leading media outlets perpetuated misconceptions about hospice. Here’s what was problematic about what they wrote and what messaging experts would *not* have done.
The New York Times story on Feb 18, 2023: “Former President Jimmy Carter, who at 98 is the longest living president in American history, has decided to forgo further medical treatment and will enter hospice care at his home in Georgia, the Carter Center announced on Saturday.”
Wrong.
The word ‘forgo’ is the problem. Pres. Carter chose a very special type of medical care called Hospice that is so clearly standard of care that it is a Medicare benefit. The Feb 18th announcement from the Carter Center that prompted the story said something slightly different:
“After a series of short hospital stays, former U.S. President Jimmy Carter today decided to spend his remaining time at home with his family and receive hospice care instead of additional medical intervention.”
The Washington Post’s article from the same day led with the same 'it’s not medical’ message as the Times. They described hospice as
“A form of care for people near the end of life and largely is intended to make patients comfortable and provide support to them and their families once they have chosen to suspend treatment”.
Again, this was both incorrect: hospice is very much a form of treatment.
The result of such coverage might be that the public thinks hospice means not getting any treatment and just dying, which is far from the reality of what we actually provide or would want them to know.
In fairness, the New York Times tried to clarify the situation (perhaps after a number of us wrote them) with this story on Feb 22 How Does Hospice Care Work?
This article better explained the benefits of hospice care — overall it was accurate and positive. However, even this story had messaging issues for us as it aligned hospice with palliative care several times by describing hospice as providing “end-of-life palliative care”. For the public, linking the two types of care probably reinforces the common misconception that palliative care is only for the end of life. This linkage was further reinforced when 2 of the 3 experts quoted in the article were described as “palliative medicine” specialists. This is an issue for any of us talking to the media when we list our dual certification in hospice and palliative care or mention our professional associations which include the names of both as well (AAHPM, HPNA, NHPCO, NCHPC).
The Solution
Here’s what you can do.
1. First, we should call out the media whenever they get something wrong. While that won’t fix the original story, it might educate them for the future. Social media can be a great way to do this.
2. Lead with the benefits when talking to a journalist. When talking about hospice, start with the value patients find in the specialized care — often at home — that hospice provides, helping the person and those caring for them to make the most of precious time. Given the misconceptions the media and public have demonstrated, reinforce that opting for hospice is opting for specialty medical care paid for by insurance. (Don’t say: it’s not stopping treatment—what people hear is ‘stopping treatment’.)
3. If you’re writing to the public, try one of the headline messages in the Serious Illness toolkit. Not all at once: choose one and structure what you are saying around it. Choose from these:
· We’ll be there when you need us. Our team will support you—whenever, wherever, however you need us.
· Enjoy more moments of life. Hospice cares for both you and the people who matter to you.
· We’ll will meet you where you are. Every person should chart their own path.
· You are not in this alone. Our team is here to help. So you can focus on life’s most precious moments.
Changing public perception is a long process. We have to build on what the public thinks they know, use messages that are consistent and reassuring, and use what we see in the media — even when it’s inaccurate — for our learning.