Can We Talk?

This week, the Massachusetts Coalition for Serious Illness Care released the results of a survey of state residents about advance care planning. The coalition wanted to know whether people were talking about their preferences for care near the end of life and if so, with whom—family? Physicians? The concern was also with whether people who had suffered a serious illness over the preceding year were more likely to have had such conversations and whether factors such as age, ethnicity, or gender influenced behavior. And regardless of whether people had discussed their views, had they designated a health care proxy, a substitute decision-maker in the event of incapacity?

On the assumption that more talk is better, it’s difficult to spin the results as encouraging. Massachusetts residents do not talk much to their doctors about such issues, even if they have had a serious illness and even if they are over age 65—although these two groups do have appreciably higher talk rates than their healthier or younger counterparts. On average, they are not very different from people in the rest of the country and the rates of conversation have not appreciably changed since the last such survey was administered in 2016.

In the population as a whole (the survey sampled adults over the age of 18), only 13 percent had had a conversation with a health care provider about their end of life preferences. Among those with a serious illness or over age 65, this rose to 27 percent.

Those surveyed were more likely to have chosen who would make decisions for them than to talk about what their surrogate should decide, with 63 percent of those over 65 having completed a health care proxy form. 

Perhaps what’s most interesting is that among those who reported they had had a discussion of their wishes, 59 percent said they had initiated the conversation, not the physician or other member of the health care team. Moreover, 34 percent of those surveyed said they did not want to have such a discussion with their doctor—they felt confident that their family members understood their wishes.

Before we get too carried away by the numbers, we should note that only about 210 of the participants were over age 65 (according to the 2010 Massachusetts census, 14 percent of the population was over 65; there were 1500 people sampled in the survey). That’s not many people on whom to base sweeping conclusions and this is the group for whom advance care planning is most essential.

Which leads me to my conclusion: advance care planning doesn’t make much sense in young people or healthy people. The likelihood that such a plan will have to be implemented is just too remote (Karen Ann Quinlan, Nancy Beth Cruzan, and Terri Schiavo notwithstanding—they are the exceptions, not the rule) and the chance that their perspective on what they would want if they were in an unimaginable future state reflects what they would actually want if such a situation came to pass seems slim. Efforts to think about future wishes make most sense for people who already have the condition that is apt to kill them in the future. Once they have started on a particular path, they are better positioned to think about the next steps on that journey.

Geriatricians learned a long time ago that “targeting” interventions to the appropriate population is crucial if they are to be beneficial (and cost-effective). Proponents of advance care should likewise concentrate their efforts on the people who stand to gain the most from discussions of the goals of care—and who are in a position to imagine their future. Even in this arena, we have a great deal of work to do. But spreading our efforts too thinly won't help.