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

• 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
• 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

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）：在美国，末期肾脏疾病（ESRD）是发病率和死亡率的重要原因。尽管肾脏移植是少数患者的一种选择，但大多数患者及其亲人在某个时候必须面对是否退出慢性透析的艰难决定。然而，对于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流逝而改变，以及它们如何影响有关是否继续还是终止透析的决策。 大约30％的ESRD患者至少患有轻度的认知障碍，并且在透析时，认知功能的经验会下降。发生这种情况时，通常会要求家庭成员做出治疗决定。因此，为了指导知情的决策，至关重要的是，不仅患者而且家庭对预后和疾病轨迹有现实的了解。 这项试点研究将调查严重的ESRD患者在血液透析及其护理人员上的观点。如果患者根据经过验证的预后工具估计一年估计死亡率> 25％，则将被定义为重病。具体目的是：1）比较认真的透析患者及其护理人员之间对未来功能状况和生活质量（QOL）的预期寿命和期望（QOL）的期望，并探索患者和看护者的期望是一致的； 2）在2和6个月的时间对患者和护理人员进行后续访谈，以探讨预期寿命，功能状态和随访时与基线期望相关的程度，并探索这些因素如何影响治疗决策； 3）使用定性方法来深入了解透析（启动，延续，终止）的决策过程，以及导致治疗期望与未来寿命，预期寿命，功能状态和QOL之间潜在不匹配的因素。 这项国家研究服务个人奖学金奖的总体目标是促进申请人的发展，姑息治疗医生M.D. M.P.H.成为一名独立的研究科学家（EOL）护理领域（特别是对于患有癌症以外的患者）的独立研究科学家。拟议的培训计划将为Wachterman博士提供对定性和高级定量研究方法的严格培训，以及与认真的患者及其家人的动手研究经验。 ESRD患者的人群不断增长，具有大量姑息治疗需求，从历史上讲，这些人对临终护理有所研究。这项研究将提供初步数据，以告知开发干预措施，以改善有关慢性透析的预后，身体机能和生活质量的沟通。这一研究的最终目标是促进围绕启动，继续或撤回透析的决策的更好以患者为中心的讨论。这一探究领域与Ninr的使命相吻合，该使命是进一步发展临终护理研究并改善接近死亡的人的生活质量。 公共卫生相关性：项目叙述是在美国开始透析的终末期肾脏疾病的老年患者的数量正在迅速增加。尽管肾脏移植是某些患者的一种选择，但大多数患者及其家人在某个时候必须面对是否退出透析的艰难决定。这项研究将通过探索严重患者及其护理人员对预后和对治疗的期望的看法来为决策过程提供信息。

项目成果

The impact of gender and marital status on end-of-life care: evidence from the National Mortality Follow-Back Survey.

性别和婚姻状况对临终关怀的影响：来自全国死亡率跟踪调查的证据。

• DOI: 10.1089/jpm.2006.9.343
• 发表时间: 2006
• 期刊: Journal of palliative medicine
• 影响因子: 2.8
• 作者: Wachterman,MelissaW;Sommers,BenjaminD
• 通讯作者: Sommers,BenjaminD

Patterns of hospice care among military veterans and non-veterans.

退伍军人和非退伍军人的临终关怀模式。

• DOI: 10.1016/j.jpainsymman.2013.08.013
• 发表时间: 2014
• 期刊: Journal of pain and symptom management
• 影响因子: 4.7
• 作者: Wachterman,MelissaW;Lipsitz,StuartR;Simon,StevenR;Lorenz,KarlA;Keating,NancyL
• 通讯作者: Keating,NancyL