The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer
Restricted accessResearch articleFirst published online December, 2020
The Impact of Varying Levels of Advance Care Planning Engagement on Perceptions of the End-of-Life Experience Among Caregivers of Deceased Patients With Cancer
Advance care planning (ACP) is used to prepare patients and caregivers for future “in the moment” decisions at the end-of-life. Patients with cancer generally do not engage in all 3 components of ACP (documented living will, health-care surrogate, end-of-life discussions); however, little is known about the impact of these varying levels of ACP engagement on caregivers postdeath.
Objective:
To examine the relationship between varying levels of ACP engagement and caregivers’ perceptions of cancer decedents’ end-of-life experiences.
Methods:
A secondary analysis of the 2002 to 2014 waves of the Health and Retirement Study data using structural equation modeling was conducted. Five levels of ACP engagement were defined: full (discussions/documents), augmented discussions, documents only, discussions only, and no engagement.
Results:
Among the 2172 cancer death cases, the analyzed sample included 983 cases where end-of-life decisions occurred. Compared to no ACP, all levels of ACP were significantly associated with caregivers’ positive perceptions of cancer decedents’ end-of-life experiences (P ≤ .001), controlling for sex, race, and Hispanic ethnicity (R2 = .21). However, the relative impact of each level of ACP engagement was not equal; full engagement (β = .61) was associated with a greater impact compared to each of the partial levels of engagement (augmented discussions [β = .33], documents only [β = .17], discussions only [β = .17]).
Conclusion:
Partial ACP engagement, not just nonengagement, serves as an important clinically modifiable target to improve the end-of-life care experience among patients with cancer and the perceptions of those experiences among bereaved caregivers.
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