Recognizing difficult trade-offs: values and treatment preferences for end-of-life care in a multi-site survey of adult patients in family practices

Abstract

BackgroundDecisions about care options and the use of life-sustaining treatments should be informed by a person’s values and treatment preferences. The objective of this study was to examine the consistency of ratings of the importance of the values statements and the association between values statement ratings and the patient’s expressed treatment preference.MethodsWe conducted a multi-site survey in 20 family practices. Patients aged 50 and older self-completed a questionnaire assessing the importance of eight values (rated 1 to 10), and indicated their preference for use of life-sustaining treatment (5 options). We compared correlations among values to a priori hypotheses based on whether the value related to prolonging or shortening life, and examined expected relationships between importance of values and the preference option for life-sustaining treatment.ResultsEight hundred ten patients participated (92% response rate). Of 24 a priori predicted correlations among values statements, 14 were statistically significant but nearly all were negligible in their magnitude and some were in the opposite direction than expected. For example, the correlation between importance of being comfortable and suffering as little as possible and the importance of living as long as possible should have been inversely correlated but was positively correlated (r = 0.08, p = 0.03). Correlations between importance of values items and preference were negligible, ranging from 0.03 to 0.13.ConclusionsPatients may not recognize that trade-offs in what is most important may be needed when considering the use of treatments. In the context of preparation for decision-making during serious illness, decision aids that highlight these trade-offs and connect values to preferences more directly may be more helpful than those that do not.Electronic supplementary materialThe online version of this article (doi: 10.1186/s12911-017-0570-x) contains supplementary material, which is available to authorized users.

Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial

“…Despite knowledge of the benefits of ACP, studies continue to document deficiencies in the quality or quantity of communication and decision-making during serious illness 13–17. Patients are seemingly able to express a preference related to the use of life-sustaining treatments, however, they report considerable decisional conflict about the preference, and there is a lack of alignment between stated values and preferences 18 19. In our survey of mostly well older adults in primary care, approximately one-third indicated that they would want only comfort care and not life-sustaining treatment if they became seriously ill and only 8% indicated a preference for cardiopulmonary resuscitation (CPR),19 suggesting that preferences may not be informed by the outcomes of various treatments for different populations.…”

“…Patients are seemingly able to express a preference related to the use of life-sustaining treatments, however, they report considerable decisional conflict about the preference, and there is a lack of alignment between stated values and preferences 18 19. In our survey of mostly well older adults in primary care, approximately one-third indicated that they would want only comfort care and not life-sustaining treatment if they became seriously ill and only 8% indicated a preference for cardiopulmonary resuscitation (CPR),19 suggesting that preferences may not be informed by the outcomes of various treatments for different populations. Other studies have documented the lay public’s significant overestimation of the probability of survival after CPR20 and a lack of understanding of palliative care 21.…”

Same, same, but different? A longitudinal, mixed-methods study of stability in values and preferences for future end-of-life care among community-dwelling, older adults

“…Strengths of this study thus include the combination of exploring DöBra card rankings as well as underlying reasoning about end-of-life preferences over time, which furthers knowledge on the dynamics between values and preferences in end-of-life decision-making [ 42 , 43 ]. Other strengths are the longitudinal design with community-dwellers in a natural setting with end-of-life preferences defined broadly, design choices also suggested by others [ 11 , 38 ], as opposed to researcher-formulated hypothetical illness scenarios.…”

Toward Understanding the Relationship Between Prioritized Values and Preferences for Cardiopulmonary Resuscitation Among Seriously Ill Adults

“…3,7,11e22 One challenge is that patients commonly endorse multiple priorities that may conflict in guiding treatment decisions near the end of life. 3,11 For example, patients may value extending life as long as possible, but simultaneously value independence, being home with family, and freedom from discomfort near the end of life. In this situation, values may fail to provide reliable guidance on treatment decisions.…”