My Family Wants Something Different'

Discordance in Perceived Personal and Family Treatment Preference and Its Association With Do-Not-Resuscitate Order Placement

Login S. George, PhD; William Breitbart, MD; Holly G. Prigerson, PhD

Disclosures

J Oncol Pract. 2019;15(11):e942-e947. 

In This Article

Abstract and Introduction

Abstract

Purpose: Patients make treatment decisions based not only on what they want, but what they think their families want. Discordance in such perceived preferences may therefore pose challenges for advance care planning. This study examines discordance in preference for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement.

Methods: One hundred eighty-nine patients with advanced cancers refractory to at least one chemotherapy regimen were enrolled in a multisite observational study. In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families' preference. DNR placement was reported by patients and verified using medical records.

Results: Approximately 23% of patients (n = 43) perceived discordance between their preference and their families' preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds (odds ratio = .35; P = .02). Subgroups of discordance and concordance showed varying DNR placement rates (χ 2, 19.95; P < .001). DNR placement rate was lowest among discordant subgroups, where there was either a personal (26.7%; four of 15) or family preference for comfort care (28.6%; eight of 28), followed by patients who perceived concordance for wanting life-extending care (34.5%; 29 of 84) and by patients who perceived concordance in wanting comfort-focused care (66.1%; 41 of 62).

Conclusion: Many patients may perceive discordance between personal and family treatment preferences, posing impediments to advance care planning. Such patients may benefit from additional decision support.

Introduction

Among patients with advanced cancer, advance care planning is critical for ensuring preference-consistent care.[1–3] As patients' planning for future care is driven by not only what patients want, but what they think their families want,[4–6] patients who perceive discordant preferences may face challenges in advance care planning.[7–9] Perceiving conflicting preferences with family would generate more uncertainty for patients regarding what care outcomes to strive for or what plans to make.[10,11] Discordance could therefore be paralyzing for care planning, resulting in no action or delayed action. In contrast, perceiving family as holding concordant preferences may provide greater confidence to proceed with making care plans.

To date, there has been little research examining whether patient perception of discordant preferences is associated with a lower likelihood of advance care planning. Such research would be critical for identifying at-risk patients and a modifiable target for intervention. Specifically, examination of patients' perceptions is important, as such perceptions of family preferences may not match true family preferences[8] but are nevertheless central to the internal decision and planning processes of the patient and thus ripe for intervention.

This study examines discordance between patients and their family caregivers in preferences for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement. The preference of prioritizing comfort as the primary goal of treatment is fundamental to guiding care choices in patients with cancer who are nearing death and has been shown to be predictive of actual care outcomes—for example, aggressive care at end of life.[12,13] DNR orders are a critical form of advance care planning as they can help to ensure that patients receive care at the end of life in more preference-consistent ways.[14,15] Thus, this study examines whether a perception by patients of discordant preferences for a fundamental priority guiding treatment decisions is associated with completion of a concrete step toward planning future care.

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