Department of Family Medicine (S.-C.L.), Fu Jen Catholic University Hospital, No. 69, Guizi Road, Taishan District, New Taipei City, Taiwan.
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.
J Pain Symptom Manage. 2024 Jun;67(6):544-553. doi: 10.1016/j.jpainsymman.2024.03.004. Epub 2024 Mar 11.
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.
To examine factors contributing to nonconcordance between end-of-life care and advance care planning.
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.
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%).
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.
尽管在预先医疗计划中做出了不复苏或舒适护理的决定，但终末期患者在接近生命终点时有时仍会接受维持生命的治疗。
探讨导致临终关怀与预先医疗计划不相符的因素。
在这项纵向回顾性队列研究中，对预计生存时间少于 6 个月且先前表示不复苏或舒适护理偏好的终末期患者进行姑息共享护理干预后进行随访。通过文献回顾和专家共识开发了一个包含 8 个项目的仪器，用于确定导致非一致性护理的因素。一个专家小组审查了电子病历，以确定每个患者与非一致性护理相关的因素。统计分析包括描述性统计和卡方检验，用于检查人口统计学特征和关联。
在纳入的 7871 名患者中，有 97 名（1.2%）接受了非一致性护理。最常见的因素是“家属对患者病情恶化感到过于痛苦，因此无法释怀”（84.5%），其次是“患者和代理人对医疗干预措施的理解有限”（38.1%），以及“患者参与决策过程的程度有限”（25.8%）。
本研究表明，与关系自主性、情感支持和健康素养相关的因素可能导致预先医疗计划与临终关怀之间的不相符。未来，制定一个强调尊重关系自主性、提供情感支持和提高健康素养的预先医疗计划模型，可能有助于患者接受目标一致和全面的临终关怀。
