Public perceptions of advance care planning, as well as a lack of understanding of the nature of hospice and palliative care, have many reluctant to pursue these options, according to a new study in the Journal of Palliative Medicine.
Advance care planning has been shown to have a significant impact on the quality and experience of life’s final stages, yet broaching these conversations with patients and families involves breaking down walls of nescience around end-of-life care. Advocates nationwide are calling for improved strategies to bring the conversation of death into a new light and shift the culture of dying in America.
“This study originated from a project I had done for the John A. Hartford Foundation thinking about the future of palliative care and what would make it thrive,” said Anthony Back, M.D., co-director of the Cambia Palliative Care Center of Excellence and one of the study’s authors. “We did a big scenario-planning exercise, and then ended up coming to two big factors that weren’t getting enough attention, one of which was public engagement. We decided to focus this study on public messaging and how it is being done for all aspects of serious illness care to learn what this information could show us and what we should be doing differently. We had the sense that we were kind of at a plateau in terms of public engagement, and in fact the research from this study really showed that. We wanted to create a bigger influence in the public’s acceptance of palliative and hospice care.”
The scope of the study extended beyond patients, families and caregivers receiving palliative and hospice care services and into the general public for a broader perspective. As Back indicated, much research has been dedicated to existing and prospective patient and family perceptions of end-of-life care, but few studies have branched out to examine preconceived notions of advance care planning among the public at large.
Researchers collected existing empirical consumer research across multiple data sources such as searches of PubMed and various other databases spanning over a timeframe from 2011 to 2020. Research from 12 studies of participants reporting surveys and interview data about hospice and palliative care, as well as advance care planning, examined obstacles in public perception and potential ways providers can work to mitigate them.
Hospice and palliative care providers have wrangled with barriers to widespread adoption of advance care planning, with the recent research adding public attitudes as an additional roadblock. The study’s analysis of more than 9,000 participants showed that 80% to 90% reported awareness of advance care planning and considered it important, with only 10% to 41% having named a proxy or completed a written document. Approximately 66% to 71% had knowledge of palliative care, often lumping the concept with end-of-life care rather than a separate realm for the seriously ill population.
“One of the biggest takeaways from this study was recognizing the issues in public messaging,” Back told Hospice News. “Each area of advance care planning, hospice, and palliative care has different messaging challenges to overcome. The challenge for advance care planning is moving people into action. It’s not necessarily that people don’t know what it is; it’s more so that they don’t want to do it for a bunch of hard reasons: a mistrust of the health system, economic struggles just to make ends meet or simply not having the bandwidth of time. Many people think their doctors and loved ones already know what they would want, and this was one of the biggest reasons they didn’t think they needed to do advance care planning. There’s a lot of public focus on ‘do not resuscitate’ wishes as the main concept of what advance care planning is, but it’s far more than that.”
The study also found that consumer awareness of hospice and palliative care also had a distinct profile in terms of importance and reports of action taking, with different challenges for public messaging in each area of patient care. More than 70% of consumers had “no idea” what palliative care is, as Back mentioned, with most conflating it with dying and end-of-life care. A little over a third held significant misconceptions of hospice care, even though more than 80% of participants reported awareness.
“Whatever we’re doing in terms of introducing the public to these concepts, it’s not working very well,” said Back. “People are generally very clear that they don’t want to talk about dying until they are forced into that situation. Their story about palliative and hospice care is that some doctor is going to come and tell them that they have to make a painful decision to pull the plug on their family member. There is a significant minority who are concerned that hospice hastens death, along with a significant minority who have had negative experiences with hospice, like hospice has not done what was promised. And so in terms of messaging, there is a little bit of a service recovery that hospice and palliative care actually needs to do. Telling people about advance care planning as a way to avoid a bad death is actually very counterproductive. I think the assumption is that once people know about our services, they’ll love us, but that is not necessarily true. ”
Providers have increasingly joined the fight to standardize advance care planning, along with many advocacy organizations and other stakeholders. A collaborative effort is taking shape to shift the conversation at the national level in serious illness and end-of-life care planning, as Back told Hospice News. In addition to the Cambia Palliative Care Center of Excellence, the nine different organizations involved include the American Academy of Hospice and Palliative Medicine, the National Hospice and Palliative Care Organization (NHPCO), the National Coalition for Hospice and Palliative Care (NCHPC), the Center to Advance Palliative Care, Ariadne Labs, Vital Talk, Respecting Choices and the Coalition to Transform Care (C-TAC). Groups are rolling out testing of new messaging principles aimed at creating a widely-used toolkit of ways to open up the public conversation.
While the pandemic has impacted progress and the approach of public messaging, pushing advance care planning to the forefront has remained a priority for many providers during COVID-19.
“We have to find a whole new way of introducing the idea of advance care planning,” Back said. “It’s not just a matter of doing more of the same, we have to totally change what we’re doing. What’s complicating things now is we’re trying to figure out what to do now in the middle of COVID, which I think has changed the rules somewhat in an overwhelming medical kind of emergency overload. It’s a mistake to assume that COVID-19 is going to introduce people to serious illness care conversations that we want them to learn, that’s not going to be the case at all. If anything, it’s even more misunderstood and being represented almost negatively with people dying alone in hospitals and facilities. We’re trying to figure out how the field as a whole should best respond to those stories.”
Companies featured in this article:
American Academy of Hospice and Palliative Medicine, Ariadne Labs, Cambia Palliative Care Center of Excellence, Center to Advance Palliative Care, Coalition to Transform Advanced Care, National Coalition for Hospice & Palliative Care, National Hospice and Palliative Care Organization, Respecting Choices, Vital Talk