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ContextDespite 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.ObjectivesTo examine factors contributing to non-concordance between end-of-life care and advance care planning.MethodsIn 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.ResultsAmong the enrolled 7,871 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%).ConclusionsThis 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.
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Shih-Chieh Lee
Dayeh University
Chih‐Yuan Shih
National Taiwan University
Shan-Ting Chen
National Taiwan University Hospital
Journal of Pain and Symptom Management
National Taiwan University
National Taiwan University Hospital
Fu Jen Catholic University
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Lee et al. (Mon,) studied this question.
synapsesocial.com/papers/68e7493fb6db6435876c1f24 — DOI: https://doi.org/10.1016/j.jpainsymman.2024.03.004
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