Focus Group Study: 30% Believe Hospice Intentionally Hastens Death

About 30% of participants in a recent study said they believe that “hospice intentionally hastens death and the dying process.”

The data appeared in a recently developed evidence-based serious illness messaging toolkit from the MessageLab Serious Illness Messaging Project. The toolkit identifies new approaches for hospice and palliative care providers to break down barriers of public misperception and apprehension of their services.

One key consideration in hospices’ public messaging is that, in today’s media and technology climate, consumers access information quickly and in small doses. This means hospices have to achieve more with less in their efforts to reach consumers, according to Dr. Tony Back, primary investigator at the MessageLab Serious Illness Messaging Project.

“We have to stop trying to confront people about dying and expecting them to accept that in some kind of social media or video post. It’s just not going to happen,” Back told Hospice News. “We’re not gaining a new consumer audience or increasing public awareness in hospice and palliative. We’re not improving levels of misconception that exist about our field. There are messaging principles we can employ to improve how hospices introduce their work to the public.”

Back is also a professor of medicine and palliative care physician at the University of Washington in Seattle, co-director at the Cambia Palliative Care Center of Excellence, and co-founder of VitalTalk.

Public misunderstandings about hospice and palliative care have long-plagued the field. Hospice providers have continuously sought marketing and outreach strategies that demonstrate the benefits and value of their services to patients and families.

But many hospices’ public messaging approaches fall short of what’s needed to dispel myths, alleviate fears, and improve awareness, according to researchers.

MessageLab researchers reviewed a wide variety of public messaging, designs and other marketing components and analytics in the hospice and palliative care space to uncover common trends and issues. Armed with this information, they developed guidelines for improved communication.

The researchers gauged public understanding of current hospice messaging across focus groups. Among those groups, about 80% did not know what advance care planning was, and only a third of those who did understand it had actually done it, according to Back.

Three-quarters of those surveyed lacked familiarity with the term “palliative care,” while others inaccurately conflated it with hospice, he added.

When it came to hospice, around 80% of survey respondents recognized the term as a type of end-of-life care, but 30% of them held the belief that the services were intended to accelerate the dying process, according to Back.

“When we say palliative and hospice in the same breath of messaging, we think it’s showing continuity of care, but the public sees it as trying to push them into services for dying people that they’re not ready to receive and accept,” he said.

Current public engagement and messaging may hinder the public’s ability to decipher the differences between palliative, hospice and advance care planning, according to fellow researcher Dr. Marian Grant, marketing consultant of the MessageLab Serious Illness Messaging Project.

“When people think about advance care planning, palliative and hospice, they don’t often separate these out as three things,” Grant told Hospice News. “We have to find a way to talk about these separately.”

Grant is also senior regulatory advisor at the Coalition to Transform Advanced Care (C-TAC) and a palliative care nurse practitioner at the University of Maryland Medical Center.

Several advocacy organizations, providers and national research groups collaborated to establish five core messaging principles:

• Talk up the benefits of hospice, palliative and advance care planning rather than focusing on fear-based messaging of “bad deaths”
• Present and revisit choices to both patients and families at every step of their illness trajectory
• Use positive stories to tell the hospice narrative rather than statistics about patient census or volume
• Invite ongoing dialogue through two-way conversations that build trust between providers and patients
• Invoke a new team beyond the hospice staff to advocate services, such as community organizations, businesses, social service sectors and religious and faith groups

“We’re trying to advocate for providers to stop doing what they’re doing, because in many cases it’s perpetuating misconceptions that this is brink-of-death care,” Grant told Hospice News. “Their messaging is evolving, but not fast enough.”

The John A. Hartford Foundation and the Cambia Health Foundation financed the research with a three-year grant.

Keeping these five principles in mind for future messaging is crucial for hospices, according to Grant. A goal is to keep fear out of the equation and focus on how hospice and palliative care can help people to live well, she said.

“We have to start with what’s important to the public, and these messaging principles can help to get there with ways to discuss the benefits rather than starting with a litany of services that hospice doesn’t cover,” Grant said. “There are ways you can cut through misunderstandings with positive stories. There are pieces and phrases to use in having consistently good messaging across the field.”

Organizations involved in the messaging project included the American Academy of Hospice and Palliative Medicine, Ariadne Labs, The Conversation Project, the Center to Advance Palliative Care (CAPC), C-TAC, National Coalition for Hospice & Palliative Care (NCHPC), National Hospice and Palliative Care Organization (NHPCO), National POLST, Respecting Choices, The Massachusetts Serious Illness Coalition and VitalTalk.