Moral distress in end-of-life care decisions in the intensive care unit

Abstract

Background: Many deaths in intensive care involve difficult decisions about withholding and withdrawing therapy and consenting to organ donation, with the potential to trigger moral distress in those involved. Moral distress occurs when an individual feels constrained from acting in accordance with their moral choice or acts against their moral judgement. The resulting sense of wrong-doing and remorse generates an exquisitely painful feeling of anguish and sense of fractured sense of identity; with detrimental consequences in the long-term. Moral distress remains a poorly recognised and understood phenomenon and little is known of the factors that trigger it in ICU end-of-life decisions. Prior research focused largely on nurses, less was known about doctors' experiences and moral distress in relatives' was an underinvestigated area.

Study Aim: This study aimed to identify the key triggers and constraints involved in the development of moral distress in end-of-life decisions in ICU and the resulting consequences of moral distress for the clinical staff and relatives involved.

Method: A qualitative narrative thematic analysis end-of-life case approach was used to undertake in-depth interviews with 20 bereaved relatives and 45 nurses and doctors closely involved in 21 patient cases of non-escalation and withdrawal of therapy, and organ donation following brain-stem death and circulatory death. The study was funded by the Research and Development division of the Public Health Agency and conducted in a large tertiary referral ICU in Northern Ireland, from August 2012- November 2013.

Key Findings: ICU nursing and medical staff experienced a considerable amount of moral distress in end-of-life care decisions. Bedside nurses and junior medical trainees with perceived lower levels of knowledge, experience and influence in end-of-life decisions experienced more moral distress than did consultants and senior nurses. At least half of relatives experienced moral distress at some point along the ICU end-of-life care trajectory. Triggers specific to all three participant groups included, breaches in consistency and continuity of care delivery and end-of-life decisions and insensitive and lengthy organ retrieval procedures. Failure to ensure 'The Good Death' left a powerful sense of failed obligation. Some relatives remained ' stuck in the chaos' of moral distress several months after the death.

Conclusion: Findings have important implications for the educational preparation of new ICU nurses and doctors to prepare them for the complexities of the ethically challenging ICU environment. An educational intervention could be tested in future research based on case studies and vignettes from the study findings and from relatives interviews uploaded onto the Healthtalkonline website. Finding also have implications for the support of relatives in ICU with follow-up after the death. There are also implications for improvement in organ retrieval services in Northern Ireland.

Date of Award	Dec 2016
Original language	English
Awarding Institution	Queen's University Belfast
Supervisor	Bronagh Blackwood (Supervisor), Danny McAuley (Supervisor), Lindsay Prior (Supervisor), Joanne Reid (Supervisor) & Ann Begley (Supervisor)