Living with end-stage renal disease: Moral responsibilities of patients

• Published in: Nursing ethics Vol. 25; no. 8; pp. 1017 - 1029
• Main Authors: Schipper, Karen, Landeweer, Elleke, Abma, Tineke A
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.12.2018; SAGE PUBLICATIONS, INC
• Subjects: Attention; Confidentiality; Disease management; Ethics; Humans; Identity; Informed consent; Kidney diseases; Kidney Failure, Chronic - psychology; Kidney Failure, Chronic - therapy; Life stress; Medical ethics; Morality; Morals; Netherlands; Nursing; Privacy; Qualitative Research; Quality of life; Selfmanagement; Support services; Netherlands; End-stage renal disease; responsibilities; moral aspects; narrative ethics; renal transplantation
• ISSN: 0969-7330; 1477-0989
• DOI: 10.1177/0969733016687154

Background: Living with a renal disease often reduces quality of life because of the stress it entails. No attention has been paid to the moral challenges of living with renal disease. Objectives: To explore the moral challenges of living with a renal disease. Research design: A case study based on qualitative research. We used Walker’s ethical framework combined with narrative ethics to analyse how negotiating care responsibilities lead to a new perspective on moral issues. Participants and research context: One case was chosen from 20 qualitative interviews with renal patients in the Netherlands. Ethical considerations: Several actions have been taken to ensure the informed consent, privacy, anonymity and confidentiality of the patient in this article. More details are offered in this article. The study has been conducted in line with the recommendations of the Medical Ethical Committee of the VU Medical Center. Findings: A renal disease can force people to change their identity, relationships, values and responsibilities. The case study illustrates the moral challenges confronting renal patients. Discussion and conclusion:: Moral issues can be raised by the changes to identities, relationships, values and responsibilities caused by renal disease. Support services for renal patients and their relatives should pay more attention to these issues in order to promote self-management.