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

重病患者的临终决策：ESRD 案例

基本信息

批准号：
8202192
负责人：
MELISSA WACHTERMAN
金额：
$ 6.32万
依托单位：
UNIVERSITY OF PENNSYLVANIA
依托单位国家：
美国
项目类别：
财政年份：
2011
资助国家：
美国
起止时间：
2011-09-21 至 2012-08-24
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/8202192
关键词：
Affect Area Award Caregivers Caring Cessation of life Chronic Clinical Cognitive Communication Data Decision Making Development Dialysis patients Dialysis procedure Disease Doctor of Medicine End stage renal failure Ensure Face Family Family member Fellowship Fostering Future Goals Hemodialysis Impaired cognition Individual Internist Intervention Interview Kidney Transplantation Life Expectancy Malignant Neoplasms Master of Public Health Melissa Minority Mission Morbidity - disease rate Palliative Care Patient-Centered Care Patients Perception Physical Function Physicians Pilot Projects Plant Roots Population Probability Process Qualitative Methods Quality of life Reporting Research Research Methodology Research Training Science Scientist Services Symptoms Time Training United States base cognitive function end of life expectation experience follow-up functional status improved loved ones mild neurocognitive impairment mortality outcome forecast palliative patient expectation patient oriented prognostic surrogate decision maker termination factor therapy development tool

项目摘要

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.

描述（由申请人提供）：终末期肾病（ESRD）是美国发病和死亡的主要原因。尽管肾移植是少数患者的一种选择，但大多数患者及其亲人在某些时候必须面临是否退出长期透析的艰难决定。然而，人们对患者及其护理人员对预后的期望知之甚少。此外，尚不清楚这些观点如何随着时间的推移而变化，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，更多人在透析期间会出现认知功能下降的情况。发生这种情况时，通常会要求家人做出治疗决定。因此，为了指导明智的决策，至关重要的是，不仅患者而且家属对预后和疾病轨迹有现实的了解。这项试点研究将调查重症终末期肾病患者及其护理人员对血液透析的看法。如果根据经过验证的预后工具，患者的一年死亡率估计> 25%，则患者将被定义为重病。具体目的是： 1）比较重病透析患者及其护理人员对预期寿命的看法以及对未来功能状态和生活质量（QOL）的期望，并探讨患者和护理人员的期望程度是一致的； 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的决策过程（开始、继续、终止）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。该国家研究服务个人奖学金奖的总体目标是促进申请人 Melissa Wachterman（医学博士、公共卫生硕士）（一名姑息治疗医生）成长为临终 (EOL) 护理领域的独立研究科学家，特别是对于患有癌症以外疾病的患者。拟议的培训计划将为 Wachterman 博士提供定性和先进定量研究方法方面的严格培训，以及对重病患者及其家人的实际研究经验。终末期肾病 (ESRD) 患者数量不断增长，对姑息治疗的需求巨大，但历史上临终关怀方面的研究不足。这项研究将提供初步数据，为干预措施的制定提供信息，以改善有关慢性透析的预后、身体功能和生活质量的沟通。这一系列研究的最终目标是促进更好地以患者为中心的讨论，围绕开始、继续或退出透析的决定。这一研究领域与 NINR 的使命高度一致，即进一步推进临终关怀研究科学并提高临终者的生活质量。公共健康相关性：项目叙述在美国开始透析的老年终末期肾病患者数量正在迅速增加。尽管肾移植对于某些患者来说是一种选择，但大多数患者及其家人在某些时候必须面临是否退出透析的艰难决定。这项研究将通过探讨重病患者及其护理人员对预后和治疗期望的看法，为决策过程提供信息。