Prolific misconceptions about palliative care have impeded access since the specialty’s inception, but providers are developing new community outreach approaches designed to improve understanding.
Palliative care providers need a public messaging framework that sufficiently and concisely communicates the full range of their interdisciplinary services, according to Marian Grant, policy and marketing consultant at Marian Grant Consulting. Grant also serves as clinical advisor of the National Partnership for Healthcare and Hospice Innovation’s (NPHI) Innovation Lab.
Careful consideration must be given to the language and visual components used in community outreach efforts, which can have significant impacts on the way their services are perceived, Grant said at the Annual Assembly of Hospice & Palliative Care, an event by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA).
“A lot of our language is probably not helping when we talk about a ‘handoff’ to palliative care,” Grant said during the assembly. “Lead with the positives. We should present choices to people. We should use positive stories. We should talk about inviting dialogue, because people are a little hesitant to make decisions or commitments to these types of care. We should talk about not just our interdisciplinary team, but [also] the team that includes the person with the illness and those who matter most to them. Their community is the team.”
Palliative care providers address seriously ill patients’ physical, emotional, psychosocial and spiritual needs, but the scope of these services can differ vastly across organizations.
Palliative care is often conflated with hospice, the most common misperception prohibiting greater awareness and understanding, said Dr. Anthony Back, co-director of the University of Washington’s (UW) Center for Excellence in Palliative Care. Back is a physician at UW Medical Center’s Colorectal Services and serves as a professor in the university’s oncology and medicine department.
Some of the community outreach tactics employed by palliative care providers to dispel common myths have focused on examples of poor outcomes for families who do not choose these services. This strategy often “backfires” and increases patients’ anxiety or hesitancy when it comes to decisions about serious illness care, Back stated.
Back and Grant pointed to recent research they co-authored as an example of ways to improve public messaging about palliative care. The research examined palliative care patients’ experiences using the Zaltman Metaphor Elicitation Technique, a method designed to study unconscious biases and socially-shared associations about the treatments participants received.
Participants described their palliative care experiences in positive ways such as “a regeneration of self-worth” and having “validation” for what they were going through, as well as providing guidance to access a “network of resources,” in the study. Study participants also reported having more agency to determine their own quality of life and having greater input into their care.
Public mistrust and misunderstandings about the nation’s health care system have been mounting in recent years, complicating palliative care provider’s community outreach efforts, Back said. Providers need to integrate more innovative and creative community outreach approaches now more than ever before, he added.
“This is more important now than ever because of the massive amount of misinformation and the growing distrust of all kinds of institutions and medical professionals,” Back said in relation to the research. “These data actually show how you can talk about things that other people, colleagues, patients and families can trust and build that relationship that we need to really do the work and provide the level of care. This is all a work in progress.”
Images can also play an important role in public messaging efforts, Grant indicated.
The research also found that some images can be misleading or perpetuate misconceptions about palliative care, such as photos of hand-holding or clasped hands, which are often associated with death, Grant stated. These types of images do not communicate a message of uplifting support, but rather passive caring for a dying individual, she added.
“Palliative care is a way to help [patients] have as rich of a life as they can within [their] limitations,” Grant said during the assembly. “You can live well even in the face of a serious illness.”
The research’s common themes can provide some guidance for palliative care providers when it comes to improving the language and visual elements that may boost public interest, according to Back.
“We consistently hear issues about people who, ‘don’t get it,’ and that whole language is all about us, and the problem is we need to figure out how to make it all about them,” Back said at the assembly. “There are ways that we can start to talk about our indicators in ways that use their language. We are addressing their perceptions, and they don’t know a lot about palliative care – [that] is the reality.”
