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，喂食管），(b)主观死亡情况（例如，情绪，身体，精神上的痛苦，疼痛；对患者的关注，尊重），以及(c)目标实现（即，接受与患者治疗偏好一致的护理），在多大程度上根据患者的种族地位（即，黑人，白人，西班牙裔）而不同。我们假设可改变的社会心理因素（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（EOL）的种族差异。拟议的研究是一项为期4年的纵向研究，涉及800名晚期癌症患者和护理者，该研究建立在NIMH R01 （MH63892）“临终患者及其幸存者的精神疾病”（PI: Prigerson）的多站点研究的基础上。MH63892招募了来自耶鲁大学癌症中心和弗吉尼亚州CT医疗保健系统的晚期癌症患者和护理人员（如配偶），以及纽约的斯隆-凯特琳纪念医院。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，使用从医疗图表和最后照顾患者的护士获得的信息。幸存的护理人员在失去亲人6个月后接受采访。结果将填补以下知识方面的巨大空白：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社会心理因素的作用。这将是第一个将不同种族患者样本中死亡结果的主观质量与死亡指标的客观质量（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。如果黑人相对于白人死于更多的生理和心理痛苦，并且这证明了更积极的护理（例如，喂食管，呼吸机的使用）的功能，这将突出需要修改调解种族与接受更积极的护理之间关系的社会心理因素（例如，沟通不良，不信任）。通过这些方式，研究结果不仅可以产生有用的信息，临床医生可以应用这些信息来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、白人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.