END OF LIFE PREFERENCES & OUTCOMES: PATIENTS & SPOUSES

提出了一项前瞻性纵向研究：(1) 慢性病患者对治疗的生活偏好及其影响因素 配偶；(2)患者和配偶的临终选择方式 在慢性病病程中的变化；以及(3) 生命偏好和各种临终治疗的实际应用 对患者配偶的负担感、悲痛感和心理健康有影响。 这项研究的总体目标是更好地了解 对临终治疗的偏好及其影响 在婚姻二元体和慢性病病程的背景下。 以家庭压力理论为基础，需要检验的中心假设是：(1) 患者和配偶对临终治疗的偏好直接不同于 患者生活质量知觉的功能和间接功能 应激源(例如，患者的身体健康和功能能力) 和资源(宗教/精神、婚姻关系、社会支持) 患者及其配偶；(2)患者与其配偶之间的一致性越大 配偶对于临终偏好的负担感越小， 配偶会感觉到。减轻负担反过来又会带来更好的心理健康 配偶；(3)在病程中，随着生活质量的下降， 对治疗的偏好将从那些专注于攻击性的改变 对那些比较姑息的人进行治疗；(4)越严重的 关于临终治疗偏好的配偶一致性和 治疗偏好和实际情况之间的一致性程度更高 进行临终治疗时，患者所经历的悲伤越少 配偶去世后，患者的心理健康状况会越好 配偶的身份。为了解决这些假设，一个五年的前瞻性研究 提出了纵向研究设计。325例终末期肾病患者及其配偶 将在基线时进行全面评估，然后分四次进行简要评估 (9个月、18个月、27个月、36个月)。成为的配偶 在观察期内丧偶的人将参加一次死后 面试。分析将集中在横断面和前瞻性两个方面 纵向关系使用回归、结构性 方程建模和分类数据分析技术。

Proposed is a prospective longitudinal study of: (1) the end of life preferences for treatment held by patients with chronic illness and their spouses; (2) the ways that end of life preference of patients and spouses change over the course of a chronic illness; and (3) the effects that end of life preferences and actual administration of various end of life treatments have on the sense of burden, grief, and mental health of the patient's spouse. The overall goal of the study is to gain better understanding of the preferences for end of life treatment and the effects of such preferences within the contexts of both the marital dyad and the course of chronic disease. Grounded in family stress theory, the central hypotheses to be tested are: (1) Patient and spouse preferences for end of life treatment vary directly as a function of perceptions of quality of patient life and indirectly as a function of the stressors (e.g., physical health and functional ability of the patient) and resources (religious/spiritual, marital relationship, social support) of patients and their spouses; (2) The greater the congruence between patient and spouse regarding end of life preferences, the less the sense of burden the spouse will feel. Reduced burden, in turn, results in better mental health for the spouse; (3) Over the course of disease, as quality of life declines, preferences for treatment will change from those focused on aggressive treatment to those that are more palliative; (4) The greater the degree of spouse congruence regarding preferences for end of life treatment and the greater the extent of congruence between preferences for treatment and actual end of life treatment administered, the less grief will be experienced by the spouse after the death of the patient and the better will be the mental health of the spouse. In order to address these hypotheses, a five-year prospective longitudinal study design is proposed. 325 patients with ESRD and their spouses would be assessed comprehensively at baseline and then briefly at four times (9, 18, 27, 36 months) over the course of the three years. Spouses who become widowed during the observation period would participate in a single post-death interview. Analyses would focus on both cross-sectional and prospective longitudinal relationships using a combination of a regression, structural equation modeling, and categorical data analysis techniques.