Blue Cross Blue Shield of Massachusetts (BCBS) is developing tools to guide advance care planning conversations, designed to identify patients’ wishes, goals, and desires for their care at the end of life or if they become unable to communicate or make decisions. The evidence-based tools will use specific terminology found to help individuals feel more receptive to these conversations.
Studies show that advance care planning can reduce hospitalizations by as much as 26%, reduce health care costs, increase community-based palliative care and hospice utilization, as well as significantly increase the likelihood that care will be delivered in accordance with the patient’s wishes.
Despite the benefits of advance care planning, many patients don’t pursue it or pursue it too late. Only 14% of patients with serious illnesses have advance care plans. Patients who choose to receive palliative care are the most likely to have a plan.
The work of BCBS and its collaborators is intended to help ameliorate the fear and uncertainty as well as resolve misconceptions associated with advance care plans.
“When it comes to advance care planning some of the messages are completely abstract, and many people don’t understand what it is. Or it’s a little bit scary or people have a lot of previous misconceptions about hospice and palliative care,” said Anna Gosline, senior director of health policy and strategic initiatives at BCBS. “We realized that there were huge vocabulary challenges, huge public perception challenges, and there was a real opportunity for education and awareness.”
BCBS has identified specific terminology that helps patients and families feel more comfortable with advanced care planning conversations. The project stems from a larger advanced care planning initiative, in which BCBS helped establish the Massachusetts Coalition for Serious Illness Care, in partnership with the Conversation Project and Ariadne Labs. The coalition currently has more than 110 members.
“The whole area of serious illness and advanced illness is a corporate priority for us and has been again since about early 2016,” Gosline told Hospice News. “This was an area where we saw huge opportunities to improve the member and family experience.”
The coalition conducted a 3,000 person national representative survey of consumers to get an idea of how the public perceives advance care planning. Through this research, the coalition found that older people are more interested in advance care plans than younger individuals. They also identified demographic disparities in which minority beneficiaries and people with a low income are less likely to engage in advance care planning.
The survey also sought to gauge how personality influences the decision to develop an advance care plan, asking questions regarding the respondents’ health states, whether they had lost a loved on to a long-term serious illness, their perceptions of the health care system, as well as their level of confidence in navigating the system and managing their own health.
“If you only look at it through demographic lenses you are not getting at the ways to group people according to the ways they are most alike in terms of their perceptions, their experiences related to advance care planning, serious illness or the end of life,” Gosline said. “We asked the question: What are all the variables that influence these decisions?”
Based on survey results, the researchers were able to group respondents into five segments:
- Worried action takers: These are younger beneficiaries who have completed an advance care plan, including identification of a proxy decision maker should they become unable to communicate. Almost 80% of these respondents had recently taken care of a dying or incapacitated loved one.
- Self-assured action takers: These tended to be retired, disproportionately white married couples who feel confident in their ability to navigate the health care system and managing their health, who have completed an advance care plan.
- Disengaged worriers: The largest segment, these are individuals who have not prepared any of advance care plan documents, who lack confidence in managing their health or navigating the system. They are the youngest and most diverse segment with the lowest education and income.
- Defiant independents: These are individuals, most older than 45, with average education and racial composition. Defiant independents have the fewest experiences with dying loved ones and feel confident in their ability to navigate the health care system.
- Skeptics: This group tends to be middle aged with lower income and education. They have the lowest trust of doctors and the poorest view of the health care system.
“The purpose is to develop messaging that will resonate across all of the groups and eventually to develop messaging to target each one of those particular groups,” Gosline told Hospice News. “You get a good idea of what kinds of messaging and words and language and concepts resonate with different groups of people to give you a deeper understanding of what’s going to appeal at a broad level, and provide deeper insights into how people perceive and address this issue.”
Development of the tools is still in process, but the coalition recently prepared a preliminary report. The end result will be a repository of recommended language, terms, and phrases to support advance care planning that appeal to each of the five segments.
The next phase after the research is a qualitative research phase, conducted for a period of four weeks in an online community of about 150 people who engage in exercises related to advance care plans and give feedback about the language and messaging that works for them.
“The No. 1 objective is that everyone has their care aligned with their goals, their wishes, their preferences, at all stages of life but especially in the face of serious illness,” Gosline said. “People’s brains often go to thoughts of [do-not-resuscitate orders] or end of life options, we had to be really thoughtful to help people avoid falling into that trap of just thinking about DNRs and ventilators and feeding tubes, because it’s about more than that.”