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

被引:6
|
作者
Kunzler, Bronson R. [1 ]
Smith, Theresa J. [2 ]
Levi, Benjamin H. [2 ,3 ]
Green, Michael J. [2 ,4 ]
Badzek, Laurie [6 ]
Katsaros, Maria G. [2 ]
Scoy, Lauren J. Van [2 ,4 ,5 ,7 ]
机构
[1] Penn State Coll Med, Hershey, PA USA
[2] Penn State Coll Med, Dept Humanities, Hershey, PA USA
[3] Penn State Coll Med, Dept Pediat, Hershey, PA USA
[4] Penn State Coll Med, Dept Med, Hershey, PA USA
[5] Penn State Coll Med, Dept Publ Hlth Sci, Hershey, PA USA
[6] Penn State Ross & Carol Nese Coll Nursing, University Pk, PA USA
[7] Penn State Coll Med, Humanities & Publ Hlth Sci, 500 Univ Dr,H-041, Hershey, PA 17033 USA
关键词
Advance care planning; surrogate decision making; spokesperson; advance directives; caregiver; INTERVENTION; FAILURE; STRESS;
D O I
10.1016/j.jpainsymman.2022.12.143
中图分类号
R19 [保健组织与事业(卫生事业管理)];
学科分类号
摘要
Context. Advance Care Planning (ACP) has fallen under scrutiny primarily because research has not consistently demon-strated 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' con-fidence 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 some -times 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. J Pain Symptom Manage 2023;65:471-478. (c) 2023 Published by Elsevier Inc. on behalf of American Academy of Hospice and Palliative Medicine.
引用
收藏
页码:471 / 478.e4
页数:12
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