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

Am J Hosp Palliat Care. 2020 Dec;37(12):1045-1052. doi: 10.1177/1049909120917899. Epub 2020 Apr 13.


Context: 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 (R 2 = .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.

Keywords: advance care planning; advance directive; bereavement; cancer; caregiver; end-of-life.

MeSH terms

  • Advance Care Planning* / statistics & numerical data
  • Caregivers*
  • Child
  • Death
  • Female
  • Humans
  • Male
  • Neoplasms* / therapy
  • Perception