Patients' perspectives on dialysis decision-making and end-of-life care .

Fahad Saeed,Sara N Davison,Muhammad Adil Sardar,Paul R Duberstein,Haris Murad,Timothy Edward Quill

doi:10.5414/cn109608

Abstract

Background: Few studies have explored dialysis patients’ perspectives on dialysis decision-making and end-of-life-care (EoLC) preferences. We surveyed a racially diverse cohort of maintenance dialysis patients in the Cleveland, OH, USA, metropolitan area. Materials and methods: In this cross-sectional study, we administered a 41-item questionnaire to 450 adult chronic dialysis patients. Items assessed patients’ knowledge of their kidney disease as well as their attitudes toward chronic kidney disease (CKD) treatment issues and EoLC issues. Results: The cohort included 67% Blacks, 27% Caucasians, 2.8% Hispanics, and 2.4% others. The response rate was 94% (423/450). Most patients considered it essential to obtain detailed information about their medical condition (80.6%) and prognosis (78.3%). Nearly 19% of respondents regretted their decision to start dialysis. 41% of patients would prefer treatment(s) aimed at relieving pain rather than prolonging life (30.5%), but a majority would want to be resuscitated (55.3%). Only 8.4% reported having a designated healthcare proxy, and 35.7% reported completing a living will. A significant percentage of patients wished to discuss their quality of life (71%), psychosocial and spiritual concerns (50.4%), and end-of-life issues (38%) with their nephrologist. Conclusion: Most dialysis patients wish to have more frequent discussions about their disease, prognosis, and EoLC planning. Findings from this study can inform the design of future interventions.

Highlights

The Institute of Medicine has called for research to improve decision-making and end-of-life care (EoLC) in patients with chronic illnesses such as chronic kidney disease (CKD) [1]
A study from the University of Alberta showed that nearly 90% of CKD patients wanted detailed information about their medical condition, including prognosis, but fewer than 10% reported having prognostic discussions with their doctors during the prior year [4]
How informed are you in regards to your medical condition and how it will change over time?

Summary

Introduction

Few studies have explored patients’ perspectives on dialysis decisions and EoLC, even though nearly 25% of dialysis patients die each year and rates of dialysis withdrawal have been increasing [1, 2, 3]. To improve dialysis decision-making and EoLC, we need a better understanding of patients’ preferences on these issues. A study from the University of Alberta showed that nearly 90% of CKD patients wanted detailed information about their medical condition, including prognosis, but fewer than 10% reported having prognostic discussions with their doctors during the prior year [4]. To the best of our knowledge, the largest recent American study concerning EoLC and dialysis treatment issues in minority patients included only 63 African American patients [7]. Findings from this study can inform the design of future interventions

Objectives

Results

Conclusion