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

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.

Dialysis Decision Making and Preferences for End-of-Life Care: Perspectives of Pakistani Patients Receiving Maintenance Dialysis

“…12 In our survey, 63% of patients considered it important to prepare and plan for death, but only 18% were able to discuss these issues with their doctors. These findings are consistent with those reported in U.S. and Canadian patients, 16,20 but the Pakistani health care system can make some fundamental changes to improve EoL care. It lacks a system for ACP, and most physicians are unaware of practices to honor patients' dignity near the end of their lives.…”

“…27 Others have argued that paternalism is universal in medical culture worldwide; it is certainly not exclusive to Pakistan. 16,20 A high proportion of the patients wished to know their prognosis, a critical component of the informed decision making, but only a few recalled having such discussions. This finding is similar to a previous Pakistani study on patients with cancer where three of five wished to know their prognosis.…”

Assessment of Self-reported Prognostic Expectations of People Undergoing Dialysis

“…Compared with other seriously ill populations, rates of advance care planning among members of this population are lower 10 , 11 and patterns of end-of-life care are more focused on life prolongation. 12 , 13 , 14 , 15 , 16 Although people with advanced kidney disease report wanting to learn about their prognosis and future course of illness, 17 , 18 , 19 , 20 , 21 nephrologists rarely share prognostic information with their patients. 22 , 23 , 24 , 25 …”

“…Prior studies suggest that people with advanced kidney disease tend to have overly optimistic expectations about the future. 21 , 24 , 26 , 27 However, these earlier studies were limited because they did not frame prognosis in terms of life expectancy, offer patients an opportunity to indicate if they were uncertain about their prognosis, or provide a detailed characterization of how prognostic expectations relate to other domains of end-of-life care.…”

Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study

“…Previous research has demonstrated numerous clinician barriers to providing conservative kidney management and facilitating advance care planning including prognostic uncertainty, inconsistent collaboration between nephrologists and primary care physicians (PCP), and limited knowledge of ESRD treatment options [10][11][12]. Although there is some literature that explores perceptions of ESRD treatment and end-of-life care options among older patients with advanced CKD and ESRD, it is unclear whether their views are consistent with their clinicians [6,[13][14][15][16][17][18][19]. To fill this knowledge gap, we sought to explore the alignment between clinician views of their responsibilities and patient clinical experiences via qualitative interviews with nephrologists, PCPs, patients, and caregivers regarding ESRD treatments and advance care planning.…”