Huge Gap Between Thinking, Doing in End-of-Life Care

When it comes to end-of-life discussions, there tends to be a major disparity between thought and action. In Massachusetts, for example, 85% of residents believe that patients and their doctors should discuss end-of-life care—but only 15% of them have actually had these conversations.

The figure doesn’t rise much for people who have serious illnesses—only about a quarter of those Massachusetts residents have talked to their doctor about end-of-life care.

That’s according to a survey from the newly established Massachusetts Coalition for Serious Illness Care, a group of 58 health care organizations brought together by Blue Cross Blue Shield of Massachusetts and other end-of-life-care experts. The goal of the coalition is to change the status quo surrounding end-of-life discussions between patients, doctors and health care proxies, statewide and beyond.

The coalition’s survey, which was commissioned by Blue Cross Blue Shield of Massachusetts and conducted by research firm SSRS, polled 1,851 Massachusetts residents by phone between March 8 and April 3. The University of Massachusetts Medical School also helped conduct the survey and analyze the results.

Of the survey respondents who had a loved one die in the past year, one-third said that person’s patient preferences were not carried out completely. One-fifth of those respondents, meanwhile, described the end-of-life care that their loved one received as only fair or poor.

Additionally, 46% of the respondents, including the majority of men, people of color, and those without college education, have not discussed their preferences for serious illness care with anyone. More than half have not named a health care agent, or proxy, to make such decisions.

The Massachusetts Coalition for Serious Illness Care hopes to eventually guarantee that all of the state’s clinicians are trained to discuss planning for serious illnesses and death with their patients, that every adult has chosen a health care decision-maker who knows his or her end-of-life wishes, and that systems are in place to record and carry out patients’ end-of-life requests.

As evidenced by the coalition’s May 12 launch in Boston, progress on these goals has already begun, Ellen Goodman, one of the founding members of the coalition, believes. Goodman is also the co-founder and director of The Conversation Project, a group dedicated to helping people discuss their wishes for end-of-life care.

“What was so wonderful about the launch yesterday was that there were all of these people in the room, a whole range of people from very different places—financial planners, faith leaders, medical people—and they were all making commitments to really change Massachusetts,” Goodman told Home Health Care News.

Though state-focused, the coalition hopes to serve as an inspiration, or a role model, for groups in other states, Goodman told HHCN.

“This is something that will affect 100% of us,” Goodman said. “Our ultimate goal is that everyone will have these conversations.”

Written by Mary Kate Nelson