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

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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.