The Value of Advance Care Planning for Spokespersons of Patients With Advanced Illness

Bronson R Kunzler; Theresa J Smith; Benjamin H Levi; Michael J Green; Laurie Badzek; Maria G Katsaros; Lauren J Van Scoy

doi:10.1016/j.jpainsymman.2022.12.143

The Value of Advance Care Planning for Spokespersons of Patients With Advanced Illness

J Pain Symptom Manage. 2023 Jun;65(6):471-478.e4. doi: 10.1016/j.jpainsymman.2022.12.143. Epub 2023 Jan 20.

Authors

Bronson R Kunzler¹, Theresa J Smith², Benjamin H Levi³, Michael J Green⁴, Laurie Badzek⁵, Maria G Katsaros², Lauren J Van Scoy⁶

Affiliations

¹ Penn State College of Medicine (B.R.K.), Hershey, PA, USA.
² Department of Humanities, Penn State College of Medicine (T.J.S., B.H.L, M.J.G., M.G.K., L.J.V.S), Hershey, PA, USA.
³ Department of Humanities, Penn State College of Medicine (T.J.S., B.H.L, M.J.G., M.G.K., L.J.V.S), Hershey, PA, USA; Department of Pediatrics, Penn State College of Medicine (B.H.L.), Hershey, PA, USA.
⁴ Department of Humanities, Penn State College of Medicine (T.J.S., B.H.L, M.J.G., M.G.K., L.J.V.S), Hershey, PA, USA; Department of Medicine, Penn State College of Medicine (M.J.G, L.J.V.S.), Hershey, PA, USA.
⁵ Penn State Ross and Carol Nese College of Nursing (L.B.), University Park, PA, USA.
⁶ Department of Humanities, Penn State College of Medicine (T.J.S., B.H.L, M.J.G., M.G.K., L.J.V.S), Hershey, PA, USA; Department of Medicine, Penn State College of Medicine (M.J.G, L.J.V.S.), Hershey, PA, USA; Department of Public Health Sciences, Penn State College of Medicine (L.J.V.S.), Hershey, PA, USA. Electronic address: lvanscoy@pennstatehealth.psu.edu.

PMID: 36690164
DOI: 10.1016/j.jpainsymman.2022.12.143

Abstract

Context: Advance Care Planning (ACP) has fallen under scrutiny primarily because research has not consistently demonstrated patient-focused benefits.

Objectives: To better understand how spokespersons regard, engage with, and find value in ACP during decision-making for their loved ones.

Methods: This qualitative analysis was part of a randomized controlled trial involving spokespersons of patients with advanced illness who had completed ACP. After making a medical decision on behalf of their loved one (or that loved one's death), semi-structured interviews explored spokespersons' experience of decision-making and if (and how) ACP played a role. Thematic analysis was conducted on interview transcripts.

Results: From 120 interviews, five themes emerged: 1) Written advance directives (ADs) helped increase spokespersons' confidence that decisions were aligned with patient wishes (serving as a physical reminder of previous discussions and increasing clarity during decision-making and family conflict); 2) Iterative discussions involving ACP facilitated "In the moment" decision-making; 3) ADs and ACP conversations helped spokespersons feel more prepared for future decisions; 4) Spokespersons sometimes felt there was "no choice" regarding their loved one's medical care; and 5) Regrets and second-guessing were the most common negative emotions experienced by spokespersons.

Conclusion: Considering the recent debate about the utility of ACP and ADs, this analysis highlights the value of ACP for spokespersons involved in surrogate decision-making. Reframing the goals of ACP in terms of their benefit for spokespersons (and identifying appropriate outcome measures) may provide additional perspective on the utility of ACP.

Keywords: Advance care planning; advance directives; caregiver; spokesperson; surrogate decision making.

Publication types

Randomized Controlled Trial
Research Support, N.I.H., Extramural

MeSH terms

Advance Care Planning*
Advance Directives
Humans

Grants and funding

R01 NR012757/NR/NINR NIH HHS/United States