We’ve got a lot of work to do. That is one of the simple messages found in the Institute of Medicine’s recent report “Dying in America.”
To be sure the IOM identified several flaws in the way that we address end-of-life care in America. Many of these issues are well outside the scope of what National Healthcare Decisions Day (NHDD) can address, but the IOM did strongly urge the on-going and enhanced used of advance care planning as a key strategy to improving end-of-life care. This, of course, is right in NHDD’s sweet spot.
Although advance care planning is not exclusively for end-of-life care, the fact remains that advance care planning—and the lack of it—come into play most often with end-of-life care. And, while it may be hard to pin down the actual number of those who have engaged in advance care planning, various studies (and my own personal experience) suggests that the number hovers around 25%.
As confirmed in the IOM report, Americans seem culturally hardwired not to talk about illness, death, and dying. As a result, we are paying a tremendous price for it. Among other things, there is tremendous waste that comes with lack of planning. In particular, in situations in which there is a lack of planning, we often waste a lot of resources spinning our wheels trying to figure out who a patient’s decision-makers are and what the patient would have wanted. The other key price we pay is making difficult times worse. Specifically, where no advance care planning has been done, family and friends often thrust into the position of making healthcare choices without ever having discussed the drivers of these choices with the patient—and then they live with the burden of second guessing themselves. In other cases, families and friends never get a proper goodbye because they are too caught up in conflict. Again, advance care planning cannot fix all of these issues, but experience shows it helps to mitigate them.
NHDD serves as a platform to do some of our nation’s much-needed work.
Admittedly, it isn’t easy to get people to pause their busy lives long enough to talk about the ends of their lives, but we need to make a concerted effort to do so. We need to be brave enough to bring up the topic in the first place, and we need to be mature enough to confront the topic comprehensively once it has been raised.
To facilitate this, NHDD exists as a catalyst for action.
NHDD has the benefit of being objectively selected—it wasn’t selected because of its relationship to any person in particular. Because of its objective nature, it may be easier for people to carve out some time on April 16 to “have the talk” or—better yet—to have the first of many talks. We just need people to mark their calendars, make no excuses, and do it.
NHDD cannot address all of what the IOM addressed in its report, but if we spur some action at the individual level on April 16, it will almost certainly make it easier to improve things at an institutional and societal level throughout the year.
Let’s use NHDD to get to work…
Nathan Kottkamp, Founder and Chair
National Healthcare Decisions Day Initiative