Quality of Death: Ethnic and Psychosocial Influences

描述（由申请方提供）：拟议研究的目的是确定以下情况的程度：（a）客观死亡情况（例如，使用呼吸器、饲管），（B）主观死亡情况（例如，情感、身体、精神痛苦、疼痛;对患者的关注、尊重），和（c）目标实现（即，接受与患者治疗偏好一致的护理），根据患者的种族状况（即，黑人、白色、西班牙裔）而不同。我们假设，可改变的心理社会因素（例如，信任、自我效能、沟通、偏好、心理健康、应对方式）将影响患者的死亡质量，并解释临终（EOL）护理中的种族差异。这项拟议的研究是一项为期4年的纵向研究，涉及800名晚期癌症患者-护理人员二人组，该研究建立在正在进行的研究的基础上，作为多中心NIMH R 01（MH 63892）“垂死患者及其幸存者的精神疾病”（PI：Prigerson）的一部分。MH 63892从耶鲁大学的癌症中心和CT的VA CT医疗保健系统以及纽约的Memorial Sloan-Kettering招募晚期癌症患者和护理人员（例如配偶）。额外的黑人和西班牙裔患者将来自德克萨斯大学西南帕克兰医院姑息治疗诊所和西蒙斯癌症中心的新地点。预期寿命< 6个月的患者及其主要照顾者接受基线评估。死亡后1周进行尸检评估，使用从病历和最后照顾病人的护士获得的信息。幸存的照顾者在损失后6个月接受采访。研究结果将填补以下方面的巨大知识空白：1）癌症患者死亡质量的种族差异，以及2）可能导致患者死亡质量种族差异的可改变的心理社会因素的作用。这将是第一项将不同种族患者样本中死亡结局的主观质量与死亡指标的客观质量（例如，接受的护理），从而确定提供给患者的护理影响其在EOL时的生活质量的方式。如果黑人死于比白人更多的身体和心理痛苦，这证明了更积极的护理的作用（例如，饲管，呼吸机使用），这将突出需要修改调节种族和接受更积极的护理之间的关系的社会心理因素（例如，沟通不畅，不信任）。通过这些方式，结果不仅可以产生有用的信息，临床医生可以应用于提高他们对文化特定需求和愿望的敏感性，而且还可以为干预措施提供信息，以改善垂死的黑人，白色和西班牙裔患者的生活质量和护理。

DESCRIPTION (provided by applicant): The aims of the proposed study are to determine the extent to which: (a) objective death circumstances (e.g., use of ventilators, feeding tubes), (b) subjective death circumstances (eg, emotional, physical, spiritual distress, pain; concern, respect shown patients), and (c) goal attainment (ie, receipt of care consistent with patient treatment preferences), differ based on the patient's ethnic status (ie, Black, White, Hispanic). We hypothesize that modifiable psychosocial factors (e.g., trust, self-efficacy, communication, preferences, mental health, coping styles) will influence the patient's quality of death and account for ethnic differences in end-of-life (EOL) care. The proposed study is a 4- year longitudinal study of 800 terminally ill cancer patient-caregiver dyads that builds on ongoing research being conducted as part of a multi-site NIMH R01 (MH63892) "Psychiatric Disorders in Dying Patients & Their Survivors" (PI: Prigerson). MH63892 enrolls terminally ill cancer patients and caregivers (eg, spouses) from cancer centers at Yale and the VA CT Healthcare System in CT, and Memorial Sloan-Kettering in NY. Additional Black and Hispanic patients will come from new sites at the University of Texas Southwestern Parkland Hospital Palliative Care Clinic and Simmons Cancer Center. Patients with a life expectancy of < 6 months and their primary caregiver receive a baseline assessment. A postmortem assessment, using information obtained from medical charts and the nurse who last cared for the patient, is conducted 1-week post-loss. Surviving caregivers are interviewed 6 months post-loss. Results will fill large gaps in knowledge about: 1) ethnic differences in the quality of death of cancer patients, and 2) the role of modifiable psychosocial factors likely to account for ethnic differences in the patient's quality of death. This will be the first study to relate subjective quality of death outcomes across ethnically diverse patient samples to objective quality of death indicators (e.g., care received) and, thereby, determine the way the care provided to the patient influences his/her quality of life at the EOL. If Blacks die in more physical and psychological distress relative to Whites, and this proves a function of more aggressive care (e.g., feeding tube, ventilator use), this would highlight the need to modify psychosocial factors mediating the relationship between ethnicity and the receipt of more aggressive care (e.g., poor communication, mistrust). In these ways, results would not only yield useful information that clinicians could then apply toward enhancing their sensitivity to culturally-specific needs and wishes, but also inform interventions to improve the quality of life and care received by dying Black, White, and Hispanic patients.