END OF LIFE PREFERENCES & OUTCOMES: PATIENTS & SPOUSES

提出了一项前瞻性纵向研究：（1）结束 长期病患者对治疗的生活偏好及其 （2）患者和配偶的临终偏好方式 （3）在慢性疾病的过程中发生变化;以及（3）结束的影响 寿命偏好和各种寿命终了治疗的实际管理 对患者配偶的负担感、悲伤感和心理健康有影响。 研究的总体目标是更好地了解 对临终治疗的偏好以及这种偏好的影响 在婚姻二人组和慢性病病程的背景下。 本研究以家庭压力理论为基础，主要假设如下：（1） 患者和配偶对临终治疗的偏好直接因 患者生活质量感知的函数，并间接作为一个函数 紧张性刺激（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） 病人和他们的配偶;（2）病人和他们的配偶之间的一致性越大， 配偶关于生命结束的偏好，负担感越少， 配偶会感觉到。减轻负担，反过来，导致更好的心理健康， 配偶;（3）在疾病过程中，随着生活质量的下降， 对治疗的偏好将从那些专注于积极的 （4）治疗的程度越高， 关于临终治疗偏好的配偶一致性， 更大程度的一致性之间的偏好治疗和实际 生命结束治疗管理，更少的悲伤将经历的 配偶去世后的病人和更好的将是心理健康 的配偶。为了解决这些假设，一个为期五年的前瞻性 纵向研究设计。325例ESRD患者及其配偶 将在基线时进行全面评估，然后在四个时间点进行简要评估 （9、18、27、36个月）。配偶成为 在观察期内丧偶的妇女将参加一次死亡后 采访分析将侧重于横截面和前瞻性 纵向关系使用回归、结构 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.