Stability of End-of-Life Preferences

Original Investigation Research

Invited Commentary

What Should Be the Goal of Advance Care Planning? Yael Schenker, MD, MAS; Douglas B. White, MD, MAS; Robert M. Arnold, MD

The systematic review by Auriemma et al1 provides a valuable synthesis of the evidence on stability of end-of-life (EOL) treatment preferences. Among 24 longitudinal studies included in quantitative analysis, they found that in most (17 of 24), more than 70% of patients’ preferences for EOL care were stable over periods ranging from weeks to years. The reRelated article page 1085 sults suggest a greater degree of preference stability among inpatients and seriously ill outpatients than among older adults without serious illness (although the former groups were assessed over shorter time periods), as well as a higher rate of stable preferences among patients who have engaged in advance care planning. The authors are careful not to overinterpret these results, noting the heterogeneity in studies precluding meta-analytic estimates, the use of hypothetical rather than “real world” scenarios, and the significant minority of patients who change their preferences for future treatment over time. However, they conclude that EOL preferences are generally stable, particularly among patients for whom advance directives may be most beneficial. This review provides an important opportunity to reflect on why we care about preference stability and its implications for EOL decision making. One might claim that if preferences for future treatments are stable, advance directives should be trusted to reflect what a patient would say if she or he loses capacity. However, in this Invited Commentary we argue that evidence of preference stability alone cannot achieve this aim. Furthermore, we discuss why efforts to ensure accuracy in EOL decision making for incapacitated patients are unrealistic and suggest an alternative focus on “authenticity,” meaning the extent to which a decision represents a patient’s core values and beliefs.2 First, there are reasons to believe that stable preferences—as measured in advance—may not give insight into a patient’s informed choice. (Similarly, a measurement system may be precise but inaccurate, meaning that the same result is elicited on repeated measures and all results are off target.) As an example, consider a pregnant woman who prefers not to have an epidural. When asked in advance, her preference to avoid anesthesia and experience a “natural” childbirth outweighs her preference to avoid pain. Presenting to the hospital in the early stages of labor, she reiterates this preference. However, as labor progresses she changes her mind, revaluing these outcomes based on her experience of prolonged and painful contractions. The next time she is pregnant, she again prefers not to have an epidural. Remembering that she had a difficult recovery from anesthesia, she hopes that her second delivery will be faster and therefore less painful. In this vignette, the patient’s preferences are informed by her values and understanding of the burdens and likely outcomes of treatment. Experiences illuminate both—labor pains

are more difficult to endure than she imagined, and the recovery from anesthesia is slower. The clinical situation changes (statistically, a second labor is likely to be quicker than the first), influencing the probability that she will experience a particular outcome. Full consideration of these factors results in a stable preference—not to receive an epidural—that is nevertheless inaccurate when reappraised during active labor. This scenario illustrates the known difficulty with “affective forecasting,” meaning that people often misjudge how they will respond to future health states.3 The challenge with EOL decision making for a patient who has lost capacity is that physicians and family members seek to use previously stated preferences—as documented in an advance directive—and apply them without the ability for the patient to reappraise. To the extent that previous preferences have been “stable,” they are presumed to be accurate. However, stable preferences may represent past choices that were never fully considered or no longer reflect core values in light of new circumstances. A stable preference to pursue life-sustaining treatment, for example, may be reconsidered only after a patient has experienced prolonged mechanical ventilation. A stable preference not to be intubated may no longer apply to an unforeseen event in which the need for intubation would most likely be brief and lifesaving. In light of constantly evolving clinical situations and life experiences, it is often impossible to anticipate how values and preferences may change. We argue further that efforts to promote widespread accuracy in EOL treatment decisions are impractical. Given the heterogeneity of illnesses and the challenge of knowing in advance how one will adapt, ensuring that EOL decisions reflect patients’ previously stated wishes is not an attainable population-level goal. Advance directives address a finite number of “boiler-plate” clinical circumstances (ie, treatment preferences if a patient is in a coma and not expected to recover) in which few patients find themselves. Therefore, even if an advance directive accurately reflects what a patient would want, it is inapplicable to most decisions because it does not specifically address them. One solution might be increasing the length of these documents to incorporate future preferences for all potential scenarios. However, this would likely worsen already low rates of advance directive completion. In addition, surveys suggest widespread public recognition that accuracy should not be the sole goal of EOL treatment decisions. Most older or seriously ill inpatients prefer to have their family and physicians participate in resuscitation decisions rather than have their advance directives strictly followed.4 As a commentator aptly noted, “many people value the certainty of their trust in their loved ones over the uncertainty of applicability of their current preferences in the future.”5 An alternative to the pursuit of accuracy in surrogate decision making is an emphasis on “authenticity.”2 Rather than

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Stability of End-of-Life Preferences

focusing exclusively on a patient’s prior choices—which only apply to a small number of clinical scenarios and may not be a true reflection of deeply considered judgments—pursuit of authenticity means striving to make decision that are consistent with the patient’s core values and beliefs. This is a very different approach—accuracy requires enacting the patient’s previously stated wishes, authenticity requires making judgments about what the patient would want—yet likely represents a more realistic goal. How to achieve authentic EOL decisions? One recommendation is to refocus advance care planning efforts on preparing for “in-the-moment” decision making by encouraging patients and surrogates to reflect on values over time.6 Once a patient lacks capacity, physicians may obtain cues to authenticity by talking with surrogates about the patient as a person. What was he like before he got sick? What is important to him? What do you think he is hoping for? This information (proARTICLE INFORMATION Author Affiliations: Department of Medicine, Section of Palliative Care and Medical Ethics, University of Pittsburgh, Pittsburgh, Pennsylvania (Schenker, Arnold); Clinical Research, Investigation, and Systems Modeling of Acute Illness (CRISMA) Center, Department of Critical Care Medicine, University of Pittsburgh, Pittsburgh, Pennsylvania (White). Corresponding Author: Yael Schenker, MD, MAS, Department of Medicine, University of Pittsburgh, 230 McKee Pl, Ste 600, Pittsburgh, PA 15213 ([email protected]). Published Online: May 26, 2014. doi:10.1001/jamainternmed.2014.1887. Conflict of Interest Disclosures: None reported. REFERENCES

vided by loved ones), coupled with information about the current clinical situation (provided by physicians), may help to shed light on what the patient would want and whether previously expressed preferences—if any are available—apply.7 Making authentic EOL decisions may seem more difficult and emotionally wrenching than striving to have patients articulate all preferences in advance. However, it is more realistic and potentially valuable because articulating advance preferences for all potential scenarios is an impossible task and likely fraught with affective forecasting errors. Preference stability does not ensure certainty that advance directives reflect a patient’s current values, nor is evidence of stable prior preferences likely to eliminate surrogates’ uncertainty about whether the right choice has been made.8 When facing difficult choices for a patient who lacks capacity, pursuit of a thoughtful decision driven by respect for the patient as a person—not merely respect for autonomy—may be the most appropriate goal.

2. Brudney D. Choosing for another: beyond autonomy and best interests. Hastings Cent Rep. 2009;39(2):31-37. 3. Halpern J, Arnold RM. Affective forecasting: an unrecognized challenge in making serious health decisions. J Gen Intern Med. 2008;23(10):1708-1712. 4. Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment: Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc. 2000;48(5)(suppl):S84-S90. 5. Kim SY. Improving medical decisions for incapacitated persons: does focusing on “accurate predictions” lead to an inaccurate picture? J Med Philos. 2014;39(2):187-195.

6. Sudore RL, Fried TR. Redefining the “planning” in advance care planning: preparing for end-of-life decision making. Ann Intern Med. 2010;153(4):256261. 7. Scheunemann LP, Arnold RM, White DB. The facilitated values history: helping surrogates make authentic decisions for incapacitated patients with advanced illness. Am J Respir Crit Care Med. 2012; 186(6):480-486. 8. Schenker Y, Crowley-Matoka M, Dohan D, Tiver GA, Arnold RM, White DB. I don’t want to be the one saying “we should just let him die”: intrapersonal tensions experienced by surrogate decision makers in the ICU. J Gen Intern Med. 2012; 27(12):1657-1665.

1. Auriemma CL, Nguyen CA, Bronheim R, et al. Stability of end-of-life preferences: a systematic review of the evidence [published online May 26, 2014]. JAMA Intern Med. doi:10.1001 /jamainternmed.2014.1183.

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What should be the goal of advance care planning?

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