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

Research output: Contribution to journalArticle

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.

Original languageEnglish (US)
Pages (from-to)336-345
Number of pages10
JournalJournal of Pain and Symptom Management
Volume60
Issue number2
DOIs
StatePublished - Aug 2020

Keywords

  • dialysis decision making
  • end-of-life care
  • ESKD
  • Palliative care in Pakistan
  • shared decision making

ASJC Scopus subject areas

  • Nursing(all)
  • Clinical Neurology
  • Anesthesiology and Pain Medicine

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