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

Authors
  • Saeed, Fahad1
  • Sardar, Muhammad2
  • Rasheed, Khalid3
  • Naseer, Raza4
  • Epstein, Ronald M5
  • Davison, Sara N6
  • Mujtaba, Muhammad7
  • Fiscella, Kevin A8
  • 1 Division of Nephrology, Department of Medicine, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA; Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA. Electronic address: [email protected]
  • 2 Department of Medicine, University of Arizona, Tuscan, Arizona, USA.
  • 3 Department of Medicine, Shifa medical Center, Islamabad, Pakistan. , (Pakistan)
  • 4 The Wright Center for Community Health, Scranton, Pennsylvania, USA.
  • 5 Division of Palliative Care, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA; Department of Psychiatry, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA; Department of Family Medicine and Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA.
  • 6 Division of Nephrology & Immunology, University of Alberta, Edmonton, Alberta, Canada. , (Canada)
  • 7 Division of Nephrology, Department of Medicine, University of Texas Medical Branch, Galveston, Texas, USA.
  • 8 Department of Family Medicine and Center for Communication and Disparities Research, University of Rochester School of Medicine and Dentistry, Rochester, New York, USA.
Type
Published Article
Journal
Journal of pain and symptom management
Publication Date
Aug 01, 2020
Volume
60
Issue
2
Pages
336–345
Identifiers
DOI: 10.1016/j.jpainsymman.2020.03.009
PMID: 32201311
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

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. To study informed dialysis decision-making and EoL attitudes and beliefs in Pakistani patients receiving dialysis. 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. 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. 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. Copyright © 2020 The Authors. Published by Elsevier Inc. All rights reserved.

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