Quality of Death: Ethnic and Psychosocial Influences

描述(由申请人提供)：拟议研究的目的是确定：(A)客观死亡情况(例如，使用呼吸机、喂养管)，(B)主观死亡情况(例如，情感、身体、精神痛苦、痛苦；关心，尊重患者)，以及(C)目标实现程度(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、白人、西班牙裔)。我们假设，可改变的心理社会因素(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，并解释临终关怀的种族差异。这项拟议的研究是对800名晚期癌症患者-照顾者双方进行的为期4年的纵向研究，该研究建立在作为多站点NIMH R01(MH63892)“临终患者及其幸存者的精神障碍”(PI：Prigerson)的一部分正在进行的研究的基础上。MH63892从耶鲁大学癌症中心、CT的VA CT医疗系统和纽约州的纪念斯隆-凯特琳登记晚期癌症患者和照顾者(例如，配偶)。其他黑人和西班牙裔患者将来自德克萨斯大学西南公园医院、姑息治疗诊所和西蒙斯癌症中心的新地点。预期寿命为6个月的患者和他们的主要照顾者接受基线评估。使用从病历中获得的信息和最后护理患者的护士，在死亡后1周进行尸检评估。幸存的照顾者在失去后6个月接受采访。这些结果将填补人们在以下方面的认识上的巨大空白：1)癌症患者死亡质量的种族差异，以及2)可能解释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的死亡结果主观质量与客观死亡质量指标(例如，接受的护理)联系起来的研究，从而确定向患者提供的护理如何影响他/她在EOL的生活质量。如果黑人死于比白人更多的身体和心理痛苦，这被证明是更积极的护理(例如，喂养管、呼吸机的使用)的作用，这将突出表明需要修改调解种族和接受更积极的护理之间的关系的心理社会因素(例如，沟通不良、不信任)。通过这些方式，结果不仅将产生有用的信息，临床医生随后可以应用于增强他们对特定文化需求和愿望的敏感性，而且还将为干预措施提供信息，以改善黑人、白人和西班牙裔临终患者的生活质量和接受的护理。

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.