End-of-life decision making in seriously ill patients: the case of ESRD

描述（由申请人提供）：终末期肾病（ESRD）是美国发病率和死亡率的重要原因。虽然肾移植是少数患者的一种选择，但大多数患者和他们的亲人必须在某些时候面临是否退出慢性透析的艰难决定。然而，我们对患者及其护理人员对预后的期望知之甚少。此外，目前尚不清楚这些观点如何随着时间的推移而改变，以及它们如何影响是否继续或终止透析的决定。大约30%的ESRD患者至少有轻度认知障碍，更多的患者在透析期间认知功能下降。当这种情况发生时，通常要求家庭成员做出治疗决定。因此，为了指导明智的决策，不仅是患者，而且家属对预后和疾病轨迹有一个现实的了解是至关重要的。这项初步研究将探讨重症ESRD患者及其护理人员对血液透析的看法。根据一种经过验证的预后工具，如果患者的一年死亡率估计为25%，则将其定义为重病。具体目的是：1)比较危重透析患者及其护理人员对未来功能状态和生活质量（QOL）的预期寿命和期望，并探讨患者和护理人员期望的一致性程度；2)在2个月和6个月时对患者和护理人员进行随访访谈，探讨随访时的预期寿命、功能状态和生活质量与患者基线期望的相关程度，并探讨这些因素如何影响治疗决策；3)使用定性方法深入了解透析（开始、继续、终止）的决策过程，以及导致治疗预期与未来预期寿命、功能状态和生活质量之间潜在不匹配的因素。这个国家研究服务个人奖学金奖的首要目标是促进申请人Melissa Wachterman，医学博士，公共卫生硕士，姑息治疗医师的发展，成为生命末期（EOL）护理领域的独立研究科学家，特别是对癌症以外的患者。拟议的培训计划将为Wachterman博士提供严格的定性和先进的定量研究方法培训，并为重症患者及其家属提供实践研究经验。ESRD患者是一个不断增长的人群，他们有大量的姑息治疗需求，而历史上对临终关怀的研究一直不足。本研究将提供初步数据，为干预措施的发展提供信息，以改善对慢性透析患者预后、身体功能和生活质量的沟通。这条研究线的最终目标是促进围绕决定开始、继续或退出透析的更好的以患者为中心的讨论。这一领域的研究与美国国立生命研究中心的使命高度一致，即进一步推进临终关怀研究的科学，提高那些接近死亡的人的生活质量。

DESCRIPTION (provided by applicant): End-stage renal disease (ESRD) is a substantial cause of morbidity and mortality in the United States. Although renal transplantation is an option for a minority of patients, most patients and their loved ones must, at some point, face the difficult decision of whether to withdraw from chronic dialysis. Yet, very little is known about the expectations of patients and their caregivers regarding prognosis. Moreover, it is unclear how these perspectives change over time, and how they affect decisions about whether to continue or terminate dialysis. Approximately 30% of ESRD patients have at least mild cognitive impairment, and many more experience declines in cognitive function over time while on dialysis. When this happens, family members are usually called upon to make treatment decisions. Therefore, to guide informed decision-making, it is critical that not only patients but also families have a realistic understanding about prognosis and disease trajectory. This pilot study will investigate the perspectives of seriously-ill ESRD patients on hemodialysis and their caregivers. Patients will be defined as seriously ill if they have an estimated one-year mortality of > 25%, based on a validated prognostic tool. The specific aims are: 1) To compare the perceptions of life expectancy and expectations for future functional status and quality of life (QOL) between seriously-ill dialysis patients and their caregivers, and to explore the extent to which patients' and caregivers' expectations are concordant; 2) To conduct follow-up interviews with patients and caregivers at 2 and 6 months to explore the extent to which life expectancy, functional status, and QOL at follow-up correlate with their expectations at baseline, and explore how these factors influence treatment decisions; 3) To use qualitative methods to gain an in-depth understanding of the decision making process about dialysis (initiation, continuation, termination) and the factors that contribute to the potential mismatch between treatment expectations and future life expectancy, functional status and QOL. The overarching goal of this National Research Service Individual Fellowship Award is to foster the development of the applicant, Melissa Wachterman, M.D., M.P.H., a palliative care physician, into an independent research scientist in the area of end-of-life (EOL) care, particularly for patients with conditions other than cancer. The proposed training plan will provide Dr. Wachterman with rigorous training in qualitative and advanced quantitative research methods, and hands-on research experience with seriously-ill patients and their families. Patients with ESRD are a growing population with substantial palliative care needs that historically has been understudied with respect to end-of-life care. This study will provide preliminary data to inform the development of interventions to improve communication about prognosis, physical functioning, and quality of life on chronic dialysis. The ultimate goal of this line of research is to facilitate better patient-centered discussions around decisions to initiate, continue, or withdraw dialysis. This area of inquiry is highly consistent with NINR's mission to further the science of end-of-life care research and improve quality of life for those approaching death. PUBLIC HEALTH RELEVANCE: Project Narrative The number of elderly patients with end-stage renal disease who begin dialysis in the United States is increasing rapidly. Although kidney transplantation is an option for some patients, most patients and their families must, at some point, face the difficult decision of whether to withdraw from dialysis. This study will inform the decision-making process by exploring the perspectives of seriously ill patients and their caregivers regarding prognosis and expectations about treatment.