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December 01, 2015

The Living Will as Improvisation

Susan P. Shapiro

(The pdf for the issue in which this article appears is available for download: Bifocal, Vol. 37, Issue 2.)

Six years after controversy over “death panels”1 scuttled efforts to compensate health professionals for advance care planning, the Centers for Medicare and Medicaid Services will begin doing just that in January 2016, including for explanation and completion of advance directive forms with patients and their families. As hundreds of thousands of practitioners stand poised to counsel tens of millions of Americans on Medicare, 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.

Ironically, this long-awaited Medicare change comes as support for these advance directive forms has reached its nadir.2 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.”3

But some recent studies offer a more hopeful prognosis. Drawing on medical records, death certificates, or retrospective surveys, several find a correlation between treatment preferences expressed in directives and outcomes such as final treatment or place of death.4 Of course, correlation is not necessarily cause. As these investigators concede, they have no way of knowing whether the living wills were even consulted or instead serve as a marker for something else.

It is not surprising that data on whether and how instructional directives are actually used are in short supply, since they require prospectively observing decision making as it unfolds. Research in two intensive care units (ICUs) in a large urban teaching hospital with a diverse population of patients has done just that.5 For three years, a medical social worker and I 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. Both qualitative and quantitative analyses of these data cast further doubt on the efficacy of these documents.

About half of these ICU patients reportedly had advance directives. Yet, in more than 1,000 encounters and family meetings between almost 300 health care providers and more than 600 patient friends and family, for only a quarter of patients with directives did anyone ever ask about treatment preferences expressed in the document, let alone describe them. And for every directive that helped honor patient wishes—providing clarification, corroboration, or closure, fostering consensus, or assuaging guilt—another failed to do so—its instructions flouted, ignored, misunderstood, providing insufficient guidance or directions no longer consistent with patient preferences.6

Of course, directives do not have to be invoked, described, or even mentioned to affect medical decisions. If living wills, or the conversations their completion occasions, provide information, guidance, authority, reassurance, or absolution to decision makers or health care providers, one would expect them to play a role in the decision-making process. Yet the study found little difference (controlling for demographics and severity of illness) in how decision makers armed with instructional directives and those without them proceed. Across almost three dozen aspects of the decision-making process, outcomes, or impact—from whether and how participants reprised patient wishes, to the decision criteria considered, how quickly decisions were reached, conflict, the emotional burden on family members, responses of health care providers, even the decisions themselves (from refusing an intervention to withdrawing life support)—only one significant difference could be found. Discussion of goals of care was more often initiated by family members of patients with directives. Though aggressive treatment is the default when patients have no advance directive, treatment decisions were not different; they were made no faster; they weighed similar criteria; and they appeared to be no less burdensome for families.7

These findings are limited to only two ICUs in a single hospital and do not reflect other settings in which end-of-life medical decisions are negotiated. Nonetheless, they raise questions about the mechanism by which living wills have the effects reported in the correlational studies. Perhaps instructional directives play a more important role outside of ICUs, for example, keeping patients out of hospitals altogether. Still, more than two-thirds of Medicare recipients visit a hospital (42% an ICU) in the last six months of life.8 There, loved ones face a torrent of complex decisions, nested in often uncertain, equivocal information, which could hardly be anticipated in a menu of checkboxes or scripted instructions written in better times when healthy patients could not envision the excruciating choices their loved ones might someday face.

Do we really want to squander Medicare dollars compensating health professionals to complete the instructional directive forms that failed, betrayed, or proved irrelevant for so many of the patients in the ICU study? Even worse, do we want to send the message to healthy patients that writing scripts with the blessing of their physician is all they need do to ensure fidelity to their wishes and protect their loved ones at life’s end?

Scripted instructions can play an important role when patients face a known imminent terminal illness.9 But advance care planning for the rest of us must eschew writing scripts and reflect on process:10 How to choose the most effective proxies and prepare them for what many characterize as the most difficult role of their life? What decision criteria are most important; how should they be weighed and tradeoffs balanced? How to evaluate probability, risk, or prognostic uncertainty? How long to pursue aggressive interventions before changing the goals of care from cure to comfort? How much suffering along the way is acceptable? What constitutes an acceptable quality of life? What fates are worse than death? How much weight to give to the needs of the family?

A wealth of stimulus material—questionnaires, videos, online exercises, facilitated dinner conversations, even card games—already exist to assist individuals and their loved ones in exploring these abstract questions. These exercises do not help formulate better scripts for unforeseen medical crises, but provide insight into how to improvise when the unthinkable occurs, especially when loved ones interact with clinicians who never knew us or our wishes.

What then should we ask of or expect from our health care providers? They ought to encourage us to undertake the advance care planning process and share the relevant stimulus materials. But their contributions are necessarily limited by the time required for these complex ongoing conversations, lack of access in an office visit to all the participants who may one day try to speak for us, and lack of training to facilitate these difficult conversations,11 which have more to do with family dynamics and personal values than medical expertise or judgment. Still, physicians should help us identify the most effective proxy decision maker, insure that we understand the choices we face, discourage us from writing scripts prematurely, pose the hard questions appropriate to our medical status, prod us to reflect on these questions with our loved ones, and remind us to reexamine our responses, priorities, and choice of decision maker as life circumstances change. But we need directors inspiring and guiding improvisation, not scriveners checking boxes on boilerplate forms.

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.

1 Nyhan, Brendan. “Why the ‘Death Panel’ Myth Wouldn't Die: Misinformation in the Health Care Reform Debate." The Forum 8, no. 1 (2010): Article 5.



2 Gillick, Muriel R. "Reversing the Code Status of Advance Directives?" New England Journal of Medicine 362, no. 13 (2010): 1239-240; Sabatino, Charles P. “The Evolution of Health Care Advance Planning Law and Policy." Milbank Quarterly 88, no. 2 (2010): 211-39; Fagerlin, Angela, and Carl E. Schneider. "Enough: The Failure of the Living Will." The Hastings Center Report 34, no. 2 (2004): 30-42.



3 IOM (Institute of Medicine). Dying in America: Improving Quality and Honoring Individual Preferences near the End of Life. National Academies Press, 2015.



4 Degenholtz, Howard B., YongJoo Rhee, and Robert M. Arnold. "Brief Communication: The Relationship between Having a Living Will and Dying in Place." Annals of Internal Medicine 141, no. 2 (2004): 113-17; Hammes, Bernard J., Brenda L. Rooney, and Jacob D. Gundrum. "A Comparative, Retrospective, Observational Study of the Prevalence, Availability, and Specificity of Advance Care Plans in a County That Implemented an Advance Care Planning Microsystem." Journal of the American Geriatrics Society 58, no. 7 (2010): 1249-255; Silveira, Maria J., Scott Y.H. Kim, and Kenneth M. Langa. "Advance Directives and Outcomes of Surrogate Decision Making Before Death." New England Journal of Medicine 362, no. 13 (2010): 1211-218.



5 Shapiro, Susan P. "Advance Directives: The Elusive Goal of Having the Last Word." NAELA Journal 8, no. 2 (2012): 205-32;  Shapiro, Susan P. "Do Advance Directives Direct?" Journal of Health Politics, Policy and Law 40, no. 3 (2015): 487-530.



6 Shapiro, Susan P. "Advance Directives: The Elusive Goal of Having the Last Word." NAELA Journal 8, no. 2 (2012): 205-32.



7 Shapiro, Susan P. "Do Advance Directives Direct?" Journal of Health Politics, Policy and Law 40, no. 3 (2015): 487-530.



8 Percent of Medicare Decedents Hospitalized At Least Once During the Last Six Months of Life, by Gender and Level of Care Intensity. Dartmouth Atlas of Health Care Web Site. Accessed December 1, 2015.,32&oloc=2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,19,20,21.



9 Hickman, Susan E., Christine A. Nelson, Alvin H. Moss, Susan W. Tolle, Nancy A. Perrin, and Bernard J. Hammes. "The Consistency Between Treatments Provided to Nursing Facility Residents and Orders on the Physician Orders for Life-Sustaining Treatment Form." Journal of the American Geriatrics Society 59, no. 11 (2011): 2091-099.



10 McMahan, Ryan D., Sara J. Knight, Terri R. Fried, and Rebecca L. Sudore. "Advance Care Planning Beyond Advance Directives: Perspectives From Patients and Surrogates." Journal of Pain and Symptom Management 46, no. 3 (2013): 355-65.



11 Halpern, Scott D., and Ezekiel J. Emanuel. "Can the United States Buy Better Advance Care Planning?" Annals of Internal Medicine 162, no. 3 (2015): 224-25. ■

Susan P. Shapiro

Susan P. Shapiro is a sociologist and research professor at the American Bar Foundation in Chicago. She works at the intersection of fiduciary relationships and trust, on the one hand, and law and regulation, on the other. Her most recent research, conducted in two intensive care units, examines how families and others make medical—often end-of-life—decisions for patients who are unable to speak for themselves. She is also a Commissioner of the ABA Commission on Law and Aging.