Between the patient and the next of kin in end-of-life care: A critical study based on feminist theory.

Abstract

For the experience of end-of-life care to be 'good' many ethical challenges in various relationships have to be resolved. In this article, we focus on challenges in the nurse-next of kin relationship. Little is known about difficulties in this relationship, when the next of kin are seen as separate from the patient. From the perspective of nurses: What are the ethical challenges in relation to next of kin in end-of-life care? A critical qualitative approach was used, based on four focus group interviews. A total of 22 registered nurses enrolled on an Oncology nursing specialisation programme with experience from end-of-life care from various practice areas participated. The study was approved by the Norwegian Social Science Data Service, Bergen, Norway, project number 41109, and signed informed consent obtained from the participants before the focus groups began. Two descriptive themes emerged from the inductive analysis: 'A feeling of mistrust, control and rejection' and 'Being between hope and denial of next of kin and the desire of the patient to die when the time is up'. Deductive reinterpretation of data (in the light of moral distress from a Feminist ethics perspective) has made visible the constraints that certain relations with next of kin in end-of-life care lay upon the nurses' moral identity, the relationship and their responsibility. We discuss how these constraints have political and societal dimensions, as well as personal and relational ones. There is complex moral distress related to the nurse-next of kin relationship which calls for ethical reflections regarding these relationships within end-of-life care.