Improving Understanding of Quality End of Life Care Using a Dyadic Approach

使用二元方法提高对优质临终护理的理解

• 批准号: 10735211
• 负责人: Sara L. Douglas
• 金额: $ 69.25万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2023
• 资助国家: 美国
• 起止时间: 2023-07-13 至 2028-06-30
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10735211
• 关键词: Advance Care Planning; Advanced Malignant Neoplasm; Caregivers; Caring; Categories; Cessation of life; Collaborations; Communication; Consensus; Correlation Studies; Development; Diagnosis; Distant Metastasis; Emergency department visit; Ensure; Exclusion; Family; Fostering; Goals; Grief reaction; Health; Health Personnel; Healthcare; Hospice Care; Hospitalization; Individual; Intervention; Investigation; Knowledge; Length of Stay; Malignant Neoplasms; Mediating; Methods; Modeling; Outcome; Palliative Care; Patient Care; Patient Preferences; Patients; Play; Process; Proxy; Quality of Care; Quality of life; Research; Resources; Risk; Role; Science; Severities; Symptoms; Theoretical model; Time; Value of Life; aggressive therapy; care outcomes; contextual factors; end of life; end of life care; end-of-life decision making; experience; health care service; improved; informal caregiver; insight; loved ones; member; preference; provider factors; research study; satisfaction; social; theories

Project Summary/Abstract There is strong national consensus about the need to deliver high-quality care at the end of life (EOL) for patients with advanced (distant metastasis) cancer. Yet, despite the efforts of healthcare providers, many patients receive care that they do not want at EOL and leave their informal caregivers struggling with complicated grief months after their death. Research, to date, has tended to define quality EOL care using unidimensional factors that do not encompass key aspects of EOL care, such as patient and family-centered EOL care that holds individual preferences for EOL care at its core. Specifically, quality EOL care has been defined in terms of either: (a) amount of aggressive health care services received, or (b) whether it was “goal concordant care”---care that aligned with the patient’s preferences and goals for EOL care. These approaches have provided limited perspectives of what constitutes quality EOL care. Aggressiveness metrics (e.g., days of hospitalization, number of emergency department visits), for example, ignore the fact that some patients want aggressive care at EOL and goal concordant care metrics ignore the post-death QOL of caregivers. It is usually the patient-caregiver dyad who experience the trajectory of care, and who need support throughout. With patients continuing to receive EOL care that they do not want and caregivers struggling with poor post- death outcomes such as complicated grief, we need a new paradigm for conceptualizing quality EOL care. This project will be the first to apply the principles of a dyadic theory of illness to examine the relationships between patient-caregiver dyadic factors (e.g., dyadic incongruence for patient symptom severity) and dyadic quality EOL care. We have reconceptualized quality EOL care to be care that benefits both members of the dyad and is present when the patient identifies the receipt of goal concordant care at EOL and the caregiver does not demonstrate complicated grief 3 months post-death. This longitudinal, descriptive, correlational study will address the following aims: Aim 1: Examine the influence of dyadic appraisal of illness factors upon dyadic quality EOL care (present or absent); Aim 2: Examine the influence of risk-protective contextual factors (individual, dyadic, family/social) on dyadic appraisal of illness factors (symptoms, EOL treatment preferences, EOL values) over time; and Aim 3: Assess the extent to which dyadic appraisal of illness factors mediate the relationship between risk-protective contextual factors and dyadic quality EOL care. Identifying specific dyadic variables (such as symptom severity incongruence) that relate to dyadic outcomes can facilitate the development of dyadic interventions aimed at enhancing communication or knowledge, for example, for both members of the dyad over time. By enhancing dyadic outcomes, we will have better stewardship of healthcare resources for patients at EOL and ensure improved quality EOL care for patients and improved post-death outcomes for caregivers---those who must carry on after the patient’s death.

项目总结/摘要 对于在生命末期（EOL）提供高质量护理的必要性，全国有着强烈的共识， 晚期（远处转移）癌症患者。然而，尽管医疗保健提供者的努力，许多 患者在EOL时接受他们不想要的护理，并让他们的非正式护理人员挣扎于 在他们死后几个月的复杂悲伤到目前为止，研究倾向于使用 不包含EOL护理关键方面的一维因素，例如以患者和家庭为中心 EOL护理以个人对EOL护理的偏好为核心。具体而言，高质量的EOL护理一直是 定义为：（a）接受积极的卫生保健服务的数量，或（B）是否是“目标 和谐护理”-与患者的偏好和终末期护理目标相一致的护理。这些方法 提供了有限的观点，什么是优质的终末期护理。攻击性度量（例如，天的 例如，住院治疗次数、急诊科就诊次数）忽略了一些患者希望 在EOL和目标一致性护理指标的积极护理忽略了照顾者的死亡后生活质量。是 通常是经历护理轨迹的患者-护理者二人组，并且在整个过程中需要支持。 由于患者继续接受他们不想要的终末护理，而护理人员在术后情况不佳时苦苦挣扎， 死亡的结果，如复杂的悲伤，我们需要一个新的模式，概念化的质量终末期护理。 这个项目将是第一个应用疾病的二元理论的原则来检查的关系 在患者-护理者二元因素（例如，患者症状严重程度的二元不一致）和二元 高质量的EOL护理。我们已经重新定义了质量EOL护理，使其既有利于 当患者在EOL时确定接受目标一致性护理，并且护理人员 并没有表现出死后三个月的复杂悲伤这项纵向的、描述性的、相关的研究 目的1：探讨疾病因素的二元评价对二元评价的影响， 优质的终末护理（存在或不存在）;目标2：检查风险保护背景因素的影响 （个人，二元，家庭/社会）对疾病因素（症状，EOL治疗偏好， 目标3：评估疾病因素的二元评估在多大程度上介导了 风险保护背景因素与二元质量EOL护理之间的关系。识别特定的并矢 与二元结果相关的变量（如症状严重程度不一致）可以促进 制定旨在加强沟通或知识的二元干预措施，例如， 二分体的成员。通过加强二元结果，我们将更好地管理医疗保健 为EOL患者提供资源，并确保改善患者的EOL护理质量， 照顾者的结果-那些在病人死后必须继续工作的人。