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

Fahad Saeed, Muhammad Sardar, Khalid Rasheed, Raza Naseer, Ronald M Epstein, Sara N Davison, Muhammad Mujtaba, Kevin A Fiscella, Fahad Saeed, Muhammad Sardar, Khalid Rasheed, Raza Naseer, Ronald M Epstein, Sara N Davison, Muhammad Mujtaba, Kevin A Fiscella

Abstract

Context: Previous studies from the U.S. and Canada report deficiencies in informed decision making and a need to improve end-of-life (EoL) care in patients undergoing dialysis. However, there is a paucity of literature on these issues in Pakistani dialysis patients, who differ from Western patients in culture, religion, and available health care services.

Objectives: To study informed dialysis decision-making and EoL attitudes and beliefs in Pakistani patients receiving dialysis.

Methods: We used convenience sampling to collect 522 surveys (90% response rate) from patients in seven different dialysis units in Pakistan. We used an existing dialysis survey tool, translated into Urdu, and backtranslated to English. A facilitator distributed the survey, explained questions, and orally administered it to patients unable to read.

Results: Less than one-fourth of the respondents (23%) felt informed about their medical condition, and 45% were hopeful that their condition would improve in the future. More than half (54%) wished to know their prognosis, and 80% reported having no prognostic discussion. Almost 63% deemed EoL planning important, but only 5% recalled discussing EoL decisions with a doctor during the last 12 months. Nearly 62% of the patients regretted their decision to start dialysis. Patients' self-reported knowledge of hospice (5%) and palliative care (7.9%) services was very limited, yet 46% preferred a treatment plan focused on comfort and symptom management rather than life extension.

Conclusion: Pakistani patients reported a need for better informed dialysis decision making and EoL care and better access to palliative care services. These findings underscore the need for palliative care training of Pakistani physicians and in other developing countries to help address communication and EoL needs of their dialysis patients.

Keywords: ESKD; Palliative care in Pakistan; dialysis decision making; end-of-life care; shared decision making.

Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.

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