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.

项目概要/摘要 对于需要在生命末期 (EOL) 提供高质量护理的需求，全国达成了强烈共识。 晚期（远处转移）癌症患者。然而，尽管医疗保健提供者做出了努力，许多人 患者在停产时接受了他们不想要的护理，并让他们的非正式护理人员陷入困境 他们死后几个月，感到复杂的悲痛。迄今为止的研究倾向于使用以下方法来定义优质的 EOL 护理： 不包含 EOL 护理关键方面的单维因素，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。具体来说，高质量的 EOL 护理已 定义为：(a) 接受的积极医疗保健服务的数量，或 (b) 是否是“目标” 一致护理”——与患者的 EOL 护理偏好和目标相一致的护理。这些方法 对于什么是优质 EOL 护理提供了有限的观点。攻击性指标（例如， 例如，忽略了一些患者想要 EOL 时的积极护理和目标一致护理指标忽略了护理人员的死后生活质量。这是 通常是患者与护理人员二人组，他们经历护理的轨迹，并在整个过程中需要支持。 患者继续接受他们不想要的 EOL 护理，而护理人员则在贫困的术后护理中苦苦挣扎。 死亡结果，例如复杂的悲伤，我们需要一个新的范式来概念化高质量的 EOL 护理。 该项目将是第一个应用疾病二元理论原理来检查这些关系的项目 患者与护理人员二元因素（例如，患者症状严重程度的二元不一致）和二元因素之间 优质的 EOL 护理。我们对优质 EOL 护理进行了重新概念化，使其成为对双方成员均有利的护理 当患者在 EOL 和护理人员处确认接受目标一致护理时，二人在场 死后 3 个月没有表现出复杂的悲伤。这项纵向、描述性、相关性研究 将实现以下目标： 目标 1：检查疾病因素的二元评估对二元评估的影响 优质的 EOL 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、 EOL 值）随着时间的推移；目标 3：评估疾病因素的二元评估在多大程度上介导 风险保护背景因素与二元质量 EOL 护理之间的关系。识别特定的二元 与二元结果相关的变量（例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， 随着时间的推移，二人组的成员。通过增强二元结果，我们将更好地管理医疗保健 为 EOL 患者提供资源，确保提高患者 EOL 护理质量并改善死后状况 护理人员的结果——患者死后必须继续工作的人员。