Three years after a coalition launched to promote end-of-life discussions in Massachusetts, the state is starting to see "the first signs of real change," Atul Gawande, co-chair of the coalition, told WBUR, citing data from the third annual end-of-life care survey by the University of Massachusetts Medical School, which was released Tuesday.
More than 90 Massachusetts-based organizations in 2015 joined together to create a collation called Massachusetts Coalition for Serious Illness Care. The coalition is made up of doctors, nurses, social workers, counselors, and other health care professionals.
According to the coalition's website, the group's efforts focus on supporting end-of-life conversations and ensuring Massachusetts residents receive health care "in accordance with their goals, values, and preferences at all stages of life, and in all steps of their care."
For the latest survey, researchers from the University of Massachusetts Medical School between March 8 and March 28 reached out to state residents ages 18 and older to understand their attitudes toward and experience with end-of-life care discussions. The survey sample included 1,500 respondents, a majority of whom were women.
According to the survey, the number of respondents who said health care providers honored and followed their loved ones' wishes for end-of-life care increased to 71% in 2018, up from 58% in 2016.
Overall, about half of respondents reported having given some thought to their preferences for medical treatment in the event they became seriously ill or impaired, according to the survey. The coalition said there was not a significant change in the percentage of respondents who had given attention to this topic between 2016, when the rate was 57%, and the latest survey, when the rate was 53%.
Meanwhile, only 13% of respondents in the latest survey said they had discussed their end-of-life care wishes with a provider, an insignificant change from 2016, when 15% of respondents had had such conversations with a health care provider, according to the survey. The survey also showed that about one-third of participants—35%—who were in "poorer health" had discussed with a health care provider their care goals in the case their conditions worsened.
Further, the survey found 41% of respondents in 2018 had completed a health care proxy form to designate in writing a person to make medical decisions for them if they are not able to do so themselves, unchanged from 2016. The leading reasons why people had not completed a health care proxy form were that respondents thought:
- They were healthy and thus would not need one, cited by 74%;
- Their spouses or family members would know their wishes, cited by 66%;
- They needed to complete the form but had not found time to do it, cited by 55%; and
- They would trust the health care team to make a decision, cited by 54%.
The survey also revealed that end-of-life conversations are more often initiated by patients and their families than by providers. Specifically, the survey found patients or family members initiated 59% of conversations about end-of-life care, while providers initiated about 41%.
Survey shows some progress but need for more, Gawande says
According to Gawande, the increase in the number of respondents who said health care providers honored and followed patients' end-of-life care wishes marked "a big leap."
Gawande said, "Go back just five years and we were still arguing about whether this conversation was a death panel." He explained that while people previously thought that you should not talk about "what you were willing to go through or not for the sake of more time," individuals now view end-of-life discussions as "not about, what do you give up," but rather about "what are we fighting for."
However, despite the progress, Gawande said more work needs to be done to make end-of-life care discussions commonplace. Citing the survey findings, Gawande noted that women were more likely to have end-of-life care discussions than men, and that whites are more likely to do so than minorities. To get more people involved in these conversations, Gawande said, "We need to get to the point where people regard this as a normal conversation and not a sign of we're just trying to give up and walk away."
Gawande also cited the findings showing that patients and their families were more likely to initiate end-of-life discussions than providers, calling the trend a "bad sign" for medical professionals and saying it demonstrated that providers have "got a long way to go."
According to Gawande, health care professionals do not initiate conservations about end-of-life care because of "a mix of anxiety and discomfort." Health care professionals, he said, "want to be as optimistic as possible and not talk about what happens if your health worsens"—but that discomfort should not deter clinicians from engaging patients in such discussions. Gawande noted that the "survey showed that when people had that conversation with their clinician, their care was rated three quarters excellent or very good." In comparison, "when that conversation didn't happen, only a quarter found that their care was excellent or very good, let alone in line with their wishes," he said.
What people should do
Gawande recommended that people take the step to pick their health care agent—the person who will make health care decisions for them when they cannot speak for themselves—and then "talk to that person and tell [him or her] what you really care about, what the minimum quality of life is that you would find acceptable."
Gawande also suggested more spouses should have end-of-life conversations to get "the big picture." He shared his own experience about having different perspective on end-of-life planning than his wife—while he viewed his own perspective as similar to that of Stephen Hawking, saying that he would accommodate most physical disabilities so long as his "brain was working and [he] could communicate," his wife said it was not a matter of whether her "brain was working," so much as whether she remained "capable of joy and happiness." Gawande said of the discussion, "That was really meaningful and important and as we go on through life, we will continue to have that conversation" (Oakes/Bebinger, WBUR, 5/15; Massachusetts Coalition for Serious Illness Care survey, 5/15; Maseriouscare.org/about, accessed 5/15).
Next, get URMC's end-of-life conversation prompts
When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.
Download URMC's conversation prompts to start improving end-of-life care for patients.