“Palliative Care: It’s Not What You Think.”

That headline over a recent article in AARP Bulletin was both good and bad. The good news is that AARP Bulletin published an accurate and positive story about palliative care that helped spread information to millions of readers age 50 and older. The bad news is the truth that the headline speaks: What the public thinks about palliative care is still often contrary to the facts. What they think is that palliative care is for patients who are dying. Or worse, they may believe that palliative care means giving up, providing less care, and hastening death. Many have no idea what palliative care is.

Developing the Message
Since AAHPM launched PalliativeDoctors.org in 2009, we’ve been working to raise awareness among the public about the benefits of hospice and palliative medicine. Before launching our public awareness efforts, we surveyed the public about their knowledge, asked leadership about how they discuss the specialty, and tried out a variety of key words and definitions in message development and media training sessions.

We developed a clear message about the specialty that defines hospice and palliative medicine specialists, summarizes the services they provide, and communicates the fact that palliative care is for patients with serious illnesses regardless of prognosis, and hospice is palliative care for patients in their last year of life. We also developed messages about topics related to palliative care such as advance directives.

We’ve had some major successes delivering these messages through the media with the help of patients and doctors willing to tell their first-hand stories and some positive data about the effectiveness of palliative care. In addition to the AARP Bulletin story and others, USA Today published a lengthy story accompanied by the ideal headline, “Palliative Care Focuses on Life,” and AAHPM leaders were featured in articles about the New England Journal of Medicine study demonstrating that palliative care extended the life of lung cancer patients.

Communicating Consistently
How to effectively explain hospice and palliative care remains a challenge and is subject to debate. The variety of services the care provides, the misconceptions and mischaracterizations about what it does (among the public, politicians, and medical community), and the variety of experiences and backgrounds of hospice and palliative medicine specialists all contribute to this challenge. Definitions are likely to evolve as the specialty grows, the need for it increases, and we continue to talk directly to the public.

“Gosh, yes, and it continues to change as our services grow and mature,” said AAHPM Executive Vice President Porter Storey, MD FAAHPM, when asked if he’s changed the way he describes hospice and palliative care.

We asked several members to comment for this article about how they describe hospice and palliative care and whether that has changed, what words or phrases they find effective, and what misconceptions they believe persist. Not surprisingly, most said that the biggest misconception about palliative care is that it is for patients for whom death is imminent. But there was also a great deal of diversity in their answers that illustrates the challenge and a belief by some that a simple, succinct definition of a specialty that provides such a variety of care isn’t possible. “Every patient and family is coming from a different place and I have not found a one-size-fits-all explanation,” Dr. Storey said.

Although most of the answers from members focused on quality of life and symptom management, others talked about interdisciplinary teams, person-centered care, establishing goals, navigating the healthcare system, help with decision making, and a seamless continuum of care—all components of palliative care. Many emphasized that palliative care is for any patient with a serious illness, regardless of prognosis. Others said it is for patients whose conditions cannot be cured.

When asked what particular words help them convey the meaning of palliative care and hospice care, many doctors said it depends. “I always ask what the other person knows about hospice and palliative care and then go from there,” said AAHPM President Ronald J. Crossno, MD CMD FAAFP FAAHPM. “It is very often fruitless to try to start an explanation without this information.”

“We pay close attention to what media and others we speak with seem to understand,” said National Hospice and Palliative Care Organization (NHPCO) President and CEO J. Donald Schumacher, PsyD.

The variety of services that are part of the care that meet the individual needs of the patients makes it difficult for many doctors to define palliative care in a succinct message. “I find that explaining to patients and families what we do has been much more helpful for me personally than coming up with a succinct definition,” said Daniel- Maison, MD FAAHPM. “When explaining to patients why we have been asked to help with their care, I explain the two broad categories of work that we do, namely assistance with pain and symptom management and helping them navigate very complex, often difficult healthcare decisions.”

Defining Palliative Care
The other key challenge in defining hospice and palliative care is finding the best way to differentiate palliative from hospice. Is palliative care the umbrella term and hospice a subset? Should they be spoken of only as individual types of care? What about the discussion of taking the H out of HPC?

“I don’t talk about hospice and palliative care. I talk about palliative care. I talk about hospice. I don’t use them together,” said AAHPM Past President Sean Morrison, MD FAAHPM. “The public gets very confused, and the target audiences for each are likely to be different.”

“I’ve moved away from talking about end-of-life care in general descriptions of palliative care,” said AAHPM President-Elect Timothy E. Quill, MD FAAHPM. “I’m trying to more clearly differentiate palliative care from hospice, even though in reality there is a lot of overlap.”

Some members rely not just on words but also on data to get their point across. “I refer to recent medical data that show hospice and palliative care are associated with improved quality of life and length of life. I also cite data showing hospice care is associated with the highest levels of family satisfaction,” said Daniel Fischberg, MD FAAHPM.

Dr. Schumacher also said he tells patients that “research has shown that some patients who choose hospice live longer on average than similar patients who do not access hospice.”

This, of course, is the opposite of what many believe. Chuck Wellman, MD FAAHPM, said there’s a misconception that palliative care means “giving less care and patients will die more quickly.”

In reality, palliative care provides more care, or as Dr. Morrison says, “an extra layer of support.” That layer of support can mean different things to different people, and what a palliative medicine specialist is and does depends on the situation. Again, it comes back to listening to the audience. “It’s not about what we are, it’s about what the patient and family need when facing a serious, life-threatening illness,” Dr. Crossno said.

Not a conventional definition, perhaps, but in many ways it is the essence of palliative care.

Takeaways
A cardiologist treats conditions of the heart. A pediatrician treats children. Ask what a hospice and palliative medicine specialist does and the answers are rarely so succinct. Despite varied answers from AAHPM members, a few common themes come across:
The best way to describe palliative care depends on the audience; it’s important to tailor the message based on their knowledge, understanding, and needs.
Data that demonstrate the effectiveness of palliative care is an important tool in explaining its benefits.
Those who have changed the way they explain palliative care say they talk less about end-of-life care than before.
Palliative care is for all patients with serious illnesses, regardless of prognosis, and is provided with other treatments.

Members can also access a new web resource to help them in talking to the media about hospice and palliative care. Visit the Members Only section of aahpm.org.