Living Wills: Do they have utility in end of life decision-making?

An article in the most recent issue of the ABA Commission on Law & Aging, BIFOCAL focuses on instructional directives.  In light of CMS reimbursing doctors for end of life discussions with patients,  author Susan P. Shapiro, in The Living Will as Improvisation, suggests  “it is appropriate to reflect on the legacy of advance directives and ask how physicians might best serve their patients as they anticipate life’s end.”

The author notes that

Although the value of proxy directives, which designate a medical decision maker in the event that a person loses capacity in the future, has been repeatedly demonstrated, that of instructional directives or so-called living wills, which state treatment preferences, has not. A new report by the Institute of Medicine concludes that legal approaches embodied in living wills have “been disappointingly ineffective in improving the care people nearing the end of life receive and in ensuring that this care accords with their informed preferences …. (citations omitted).

However, the author discusses the lack of hard data makes it difficult to determine whether living wills have little usefulness these days. The author turns to her own research, explaining that for 3 years she and hospital social worker

observed medical decision making on behalf of patients without decision-making capacity, day after day, from admission to discharge. Daily observations over the course of each patient’s ICU stay tracked when anyone asked about or referred to an advance directive, how the directive was used, and the correspondence between the patient’s treatment preferences articulated in the directive and the host of decisions made on their behalf….

The article discusses her findings regarding the role of advance directives in these cases .  It’s quite illuminating, especially the discussion about the correlation (or lack thereof) between the directive’s existence and how decisions are made.  The author suggests there are significant differences between making the directive when all is well and using the directive when all is not.    The author concludes the article with  this thought: “[a] truly directive living will is not a script, but rather an evolving, ongoing dialogue throughout the life course with those who may someday be called to improvise on our behalf. Let’s hope that Medicare dollars are used to help enrich the conversation.”