Factors Contributing to Non-Concordance Between End-of-Life Care and Advance Care Planning

Shih-Chieh Lee; Chih-Yuan Shih; Shan-Ting Chen; Ching-Yi Lee; Shin-Rung Li; Chia-Chun Tang; Jaw-Shiun Tsai; Shao-Yi Cheng; Hsien-Liang Huang

doi:10.1016/j.jpainsymman.2024.03.004

Factors Contributing to Non-Concordance Between End-of-Life Care and Advance Care Planning

J Pain Symptom Manage. 2024 Mar 11:S0885-3924(24)00657-2. doi: 10.1016/j.jpainsymman.2024.03.004. Online ahead of print.

Authors

Shih-Chieh Lee¹, Chih-Yuan Shih², Shan-Ting Chen³, Ching-Yi Lee³, Shin-Rung Li³, Chia-Chun Tang⁴, Jaw-Shiun Tsai², Shao-Yi Cheng², Hsien-Liang Huang⁵

Affiliations

¹ Department of Family Medicine (S.-C.L.), Fu Jen Catholic University Hospital, No. 69, Guizi Road, Taishan District, New Taipei City, Taiwan.
² Department of Family Medicine, College of Medicine and Hospital (C.-Y.S., J.-S.T.,S.-Y.C.,H.-L.H.), National Taiwan University, No. 7, Chung Shan S. Rd., Zhongzheng Dist., Taipei, Taiwan.
³ Department of Nursing (S.-T.C.,C.-Y.L.,S.-R.L.,C.-C.T.), National Taiwan University Hospital, No. 7, Chung Shan S. Rd., Zhongzheng Dist., Taipei, Taiwan.
⁴ Department of Nursing (S.-T.C.,C.-Y.L.,S.-R.L.,C.-C.T.), National Taiwan University Hospital, No. 7, Chung Shan S. Rd., Zhongzheng Dist., Taipei, Taiwan; School of Nursing, College of Medicine (C.-C.T.), National Taiwan University, No. 1, Sec. 4, Roosevelt Rd., Taipei, Taiwan.
⁵ Department of Family Medicine, College of Medicine and Hospital (C.-Y.S., J.-S.T.,S.-Y.C.,H.-L.H.), National Taiwan University, No. 7, Chung Shan S. Rd., Zhongzheng Dist., Taipei, Taiwan. Electronic address: tennishuang@gmail.com.

PMID: 38479538
DOI: 10.1016/j.jpainsymman.2024.03.004

Abstract

Context: Despite making do-not-resuscitate or comfort care decisions during advance care planning, terminally ill patients sometimes receive life-sustaining treatments as they approach end of life.

Objectives: To examine factors contributing to nonconcordance between end-of-life care and advance care planning.

Methods: In this longitudinal retrospective cohort study, terminally ill patients with a life expectancy shorter than six months, who had previously expressed a preference for do-not-resuscitate or comfort care, were followed up after palliative shared care intervention. An instrument with eight items contributing to non-concordant care, developed through literature review and experts' consensus, was employed. An expert panel reviewed electronic medical records to determine factors associated with non-concordant care for each patient. Statistical analysis, including descriptive statistics and the chi-square test, examines demographic characteristics, and associations.

Results: Among the enrolled 7871 patients, 97 (1.2%) received non-concordant care. The most prevalent factor was "families being too distressed about the patient's deteriorating condition and therefore being unable to let go" (84.5%) followed by "limited understanding of medical interventions among patients and surrogates" (38.1%), and "lack of patient participation in the decision-making process" (25.8%).

Conclusions: This study reveals that factors related to relational autonomy, emotional support, and health literacy may contribute to non-concordance between advance care planning and end-of-life care. In the future, developing an advance care planning model emphasizes respecting relational autonomy, providing emotional support, and enhancing health literacy could help patients receiving a goal concordant and holistic end-of-life care.

Keywords: Advance care planning; End of life; Palliative care; Relational autonomy; Shared decision making.