Lehto Hanna-Riikka, Wang Yidi, Manning Katharine A, Lakin Joshua R, O'Shea Lauren K, Landzberg Michael J, Orkaby Ariela R, Desai Akshay S, Tulsky James A, Jain Nelia, Bernacki Rachelle E
Department of Psychosocial Oncology and Palliative Care, Dana Farber Cancer Institute, Boston, Massachusetts.
Harvard Medical School, Boston, Massachusetts.
JHLT Open. 2024 Apr 9;4:100092. doi: 10.1016/j.jhlto.2024.100092. eCollection 2024 May.
Patients undergoing evaluation for advanced heart failure therapies (AHT) are at a critical juncture of their illness. Guidelines recommend shared decision-making with patients and caregivers; however, the approach and content of these discussions are unknown.
Patients referred to a specialty palliative care service during AHT evaluation between October 2018 and September 2022 were identified from electronic health care records. Goals of care conversations documented in an advance care planning module were analyzed for participants, content, and timing before the transplant selection committee meeting. Primary outcomes included the prevalence of documented hopes, worries, shared prognostic communication, illness understanding, treatment expectations, and information preferences. Patients were followed for a minimum of 6 months to evaluate secondary processes and clinical outcomes.
Ninety-four patients (mean age 52.8 years, 76.6% male) met the criteria. Most patients (97.9%, = 92) had illness understanding documented. In initial discussions, 76.3% ( = 71) hoped to "live longer" and 67.7% ( = 63) to "be independent"; thematic analysis supported these hopes with 91.0% of patients expecting "better functionality." Most patients preferred multimodal information and communication. During follow-up, 27.7% ( = 26) had treatment decisions deferred at the initial committee presentation, and 43.6% ( = 41) were reviewed at multiple selection committee meetings. By the end of the study period, 53.2% ( = 50) underwent one or more AHT and 24.5% ( = 23) had died.
Patients undergoing the AHT evaluation process face considerable uncertainty. A standardized approach by a specialty palliative care service elicits patients' illness understanding, hopes, worries, treatment expectations, and information preferences to promote shared decision-making at this critical time.
接受晚期心力衰竭治疗（AHT）评估的患者正处于疾病的关键阶段。指南建议与患者及其护理人员共同进行决策；然而，这些讨论的方式和内容尚不清楚。
从电子医疗记录中识别出2018年10月至2022年9月期间在AHT评估期间转诊至专科姑息治疗服务机构的患者。分析了在预先护理计划模块中记录的护理目标对话的参与者、内容以及在移植选择委员会会议之前的时间安排。主要结果包括记录在案的希望、担忧、共同的预后沟通、疾病理解、治疗期望和信息偏好的发生率。对患者进行至少6个月的随访，以评估次要过程和临床结果。
94名患者（平均年龄52.8岁，76.6%为男性）符合标准。大多数患者（97.9%[n = 92]）有疾病理解记录。在最初的讨论中，76.3%（n = 71）希望“活得更长”，67.7%（n = 63）希望“独立”；主题分析支持了这些希望，91.0%的患者期望“功能更好”。大多数患者更喜欢多模式信息和沟通。在随访期间，27.7%（n = 26）在最初的委员会报告中推迟了治疗决策，43.6%（n = 41）在多次选择委员会会议上接受了审查。到研究期结束时，53.2%（n = 50）接受了一种或多种AHT，24.5%（n = 23）已经死亡。
接受AHT评估过程的患者面临相当大的不确定性。专科姑息治疗服务机构采用标准化方法可引发患者对疾病的理解、希望、担忧、治疗期望和信息偏好，以在这个关键时期促进共同决策。
