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Message Lab Points Serious Illness Care Messaging in a Positive Direction

Larry Beresford

Palliative care, hospice, and advance care planning provide highly valued supportive services for people who are struggling with manifestations of a serious illness, for their families, and for their healthcare providers. But after many years of advocates trying to explain these services to the public, they are still not well understood by potential consumers, subject to wide-ranging misconceptions, and thus not as widely used as professionals think they could be.

The general public thinks of these three services as more or less the same thing—that they are only meant for people who are dying very soon, said Anthony Back, MD, an inpatient palliative care physician at the University of Washington, Seattle, and principal investigator of Message Lab. Message Lab is a project aimed at studying and applying public marketing concepts to serious illness care, which has an identity problem, according to Back. Lots of patients who could benefit from palliative care aren’t getting it. “If our primary goal is to ease suffering, that depends on public acceptance, which is a problem if people don’t understand what we do.”

Supported with grants from The John A. Hartford Foundation and the Cambia Health Foundation, Message Lab has spent the past 3.5 years studying techniques of professional marketing and how these concepts could be applied to the field of serious illness care, with the goal of improving its messaging. Message Lab developed five principles for communicating about serious illness care to the public (see sidebar) and tested those principles in professionally facilitated focus groups of consumers, impacted family members, and health professionals.

Five Basic Messaging Principles1

  • Talk up the benefits. These services and care improve peoples’ lives. (Don’t lead with dying.)
  • Present choice. At every stage of an illness, you have choices.
  • Use positive stories. People want to hear from people like them. The stories that resonate are positive and aspirational.
  • Invite dialogue. The call to action is to talk with someone.
  • Invoke a new team. Patients, families, clinicians, and community all have a role.

These five principles are food for thought for the field, said consultant and Message Lab coinvestigator Marian Grant, DNP RN. “If we could get most of our messaging to focus on the benefits—emphasizing what palliative care is, not what it isn't—that could create consistency and generate less confusion,” she said. “We don’t all have to use the same phrases, but we should use disciplined communication strategies that have worked in other public information campaigns. We know that when you tell people a story about palliative care, they want it,” Grant said.

The project has used the same techniques that professional marketers use, Back explained. “We came together with a group of key stakeholders to talk about how we could do something different in the way we talk to the public in order to reduce confusion and misperceptions.” The project started with studying what published consumer research has already shown, and then it tested perceptions of messages around palliative care, hospice, and advance care planning—including their effectiveness and clarity.

The Academy and nine other national serious illness–focused organizations have participated in learning, testing, and applying the principles. After the COVID-19 pandemic hit, a second round of focus groups explored how COVID-19 changed the landscape. Focus group participants said COVID-19 was not viewed the same as serious illnesses like cancer. And the previously defined messaging principles for serious illness care still were viewed as helpful.1

Important Messages

One important conclusion is that messaging to the public around palliative care, hospice, and advance care planning faces different challenges, and each needs its own distinct message. A 2021 article by the Message Lab researchers in the Journal of Palliative Medicine2 was a scoping review (designed to synthesize a body of research in an emerging area) of the literature on public perceptions in this field. It concluded that for messaging to work at the public level, it needs to speak to the needs of the audience that will be using the service.

“These are three different problems. We should stop talking about them in the same breath,” Back said. “We should think about them as three different products. Otherwise, we’re just confusing the public.” For instance, three-quarters of the public don't know what palliative care is, at least well enough to be able to rate it for favorability, so explaining to a member of the public that palliative care services can include hospice just reinforces the notion that palliative care is about dying.

Hospice is more widely known. Most people correctly associate it with the end of life. But it has its own perception problems. It is often viewed favorably but only for those who badly need it, while a certain percentage of the public has serious reservations about its quality and whether it hastens death. Most people say they know what advance care planning is, but only 30% have been moved to act on that understanding and complete an advance directive.

It is also important to understand how messaging these concepts to the public or a consumer audience that lacks personal experience with serious illness is very different than what to say when working clinically with patients who are in the midst of a serious illness. What creates clarity for a patient might not be the best introduction for a member of the public, making it harder to reach them later when they might need the services.

The public currently perceives these services as provided by “well-meaning people who are going to want to talk to me about dying,” Back related. “Well, I don’t want to talk about dying. I want to talk about how I’m going to live longer and what’s the best medical care for me. I will tell you that in our focus groups, when we read 100-word stories about palliative care, hospice, and advance care planning and how they benefit people, they said, ‘That sounds great,’” he explained.

What are the recommended public messages? “For palliative care, it’s an extra layer of support for living well with a serious illness. For hospice, let’s focus on how we are there to support you when you really need it. Everyone already knows hospice is about dying, so you don’t need to keep repeating it,” Back said. With advance care planning, the message is: Talk to your family and the people who matter to you. Tell them what kind of medical care is important to you. You can have a say in your care.

Most members of the Academy have occasions when they talk to the public about their work, Back explained. They give formal presentations, and they also talk to their friends and colleagues. They should think about what they say when introducing palliative care to someone for the first time. “When trying to create an attractive introduction to palliative care, you might say, ‘I help people live well when they have a serious illness.’ When you talk to a journalist, you can highlight the benefits of the service instead of getting wound up in the policy details.” Nuanced distinctions aren’t going to be heard.

Joseph Rotella, MD MBA HMDC FAAHPM, AAHPM’s chief medical officer, said the hospice philosophy drew him into this field in the late 1990s. “I came with a great love for hospice. I don’t flinch at thinking or talking about death and dying—when the time is appropriate. But I should never assume that another person feels the same way. We should never lead off talking about death with the public. And focusing on what’s wrong doesn’t build trust or make our message more appealing. Instead, start with positive stories and times where serious illness care worked for people,” he said. Say what palliative care is (ie, an extra layer of support)—not what it isn’t (hospice).

Reimagining Messaging

Erik Fromme, MD FAAHPM, a palliative care physician at the Dana-Farber Cancer Institute in Boston and senior scientist at the Serious Illness Care Program at Ariadne Labs, says the messagefrom Message Lab is timely for the palliative care field. “For a long time, we in palliative care haven’t done ourselves any favors regarding public awareness. Trying to normalize talking about death and make that more acceptable, unsurprisingly, hasn’t gotten very far.”

Most palliative care professionals who are not directly active in marketing still get many chances to explain what they do, perhaps in a church or faith group, in line at the grocery store, or speaking to a neighbor. “All of us in this field know in our hearts that our image is an issue. At a certain point we need to recognize that patients are still coming to us too late, or only at the end of life, and the public still equates palliative care with end-of-life care and dying patients.”

Fromme recalled a patient he worked with 15 years ago who had strongly resisted a visit from the palliative care team. “He finally relented and let us talk to him. ‘Wow, this is great,’ the patient told us. The second time he saw us, he said, ‘You guys in palliative care have a real branding problem. You need to find the person who turned squid into calamari.’” This patient had held an idea of palliative care that was very different than what it actually is, and he had to experience it for himself to see that palliative care people just want to help. He thought an image enhancement could make more people open to it.

Fromme suggested Weight Watchers as another example. Instead of talking about weight, Weight Watchers leads its public messages with all the ways it can help people get healthy. AARP doesn’t lead with “you’re old” and in fact no longer uses the words “retired persons” in its publicity, just the four initials. These organizations used the same sophisticated marketing professionals to guide this refined messaging.

“If our goal is to guide people to get the best care possible, we all need to ask: What are the barriers, and how can we overcome them?” Fromme said. “We need to recognize that the image people have of us is a barrier to getting access to our services or causes them to come too late.” He sees the Message Lab’s conversation as an illustration of the field’s maturation.

“Originally people were proud to say, often in solemn tones, ‘We care for the dying.’ I know I went through that phase. But at a certain point you have to recognize that we can’t keep leading with death and suffering.” If a significant proportion of your public messages about your service are about death, dying, and suffering, that may be a problem, Fromme said. “What I learned was that my own instincts weren’t always trustworthy in this regard.”

What Would Messaging Success Look Like?

Back said he recently worked with the Oregon Coalition for Living Well with Serious Illness on a 60-second video designed to air in conjunction with National Healthcare Decisions Day. It’s message: You can have a say in your care. “It didn’t mention advance care planning, but it pushed people with a call to action: Visit our website.” Promoted on Facebook, primarily in Washington and Oregon, it generated more than 250,000 views.3

Another campaign with End Well, a San Francisco–based organization that partners with other groups that also believe living well means ending well, posed the question of what people would want
for their care if they were seriously ill, but without mentioning death. It ran for 3 months at the end of 2021 and got more than two million views.

“We have some empirical experience that messaging this way does attract the public’s attention. There are other ways than leading with death, even if that flies in the face of perceived wisdom for the field that we need to just try to get people to accept death,” he said. “We need to talk about what living well means. When we use that concept with the public, they don’t know what that is. They don’t have good stories in mind.”

But this process is just beginning, Back said. There still is a lot to learn about how to reach the public audience.

Editor’s Note: The Academy’s public-facing website, palliativedoctors.org, emphasizes compassionate care at any stage of illness and defines palliative care in terms of focusing on “improving a patient ’s quality of life by managing pain and other distressing symptoms of a serious illness. Palliative care should be provided along with other medical treatments.” This website is currently being revised according to Message Lab principles and will be relaunched soon. Thanks to its participation in Message Lab, AAHPM is continuing to refine its public messaging and has provided media training to key leaders.

Message Lab will be launching an online tool kit in the fall with a variety of resources, messages, and even visual assets that will be downloadable for free.

References

  1. Back AL, Grant MS, McCabe PJ. Public messaging for serious illness care in the age of Coronavirus Disease: cutting through misconceptions, mixed feelings, and distrust. J Palliat Med. 2021;24(6):816–819. doi:10.1089/jpm.2020.0719
  2. Grant MS, Back AL, Dettmar NS. Public perceptions of advance care planning, palliative care, and hospice: a scoping review. J Palliat Med. 2021;24(1):46–52. doi:10.1089/jpm.2020.0111
  3. Back AL, Warner MR, Beard KM, Goodnow MH, Constans LA, McCabe PJ. Use of messaging principles to design a Facebook ad promoting public engagement in serious illness care for National Healthcare Decisions Day. J Palliat Med. 2021;24(12):1762–1765. doi:10.1089/jpm.2021.0346

Larry Beresford is a medical journalist in Oakland, CA, with a strong interest in hospice and palliative care.

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