Negotiated reorienting: A grounded theory of nurses’ end-of-life decision-making in the intensive care unit
Intensive care units (ICUs) focus on treatment for those who are critically ill and interventions to prolong life. Ethical issues arise when decisions have to be made regarding the withdrawal and withholding of life sustaining treatment and the shift to comfort and palliative care.
These issues are particularly challenging for nurses when there are varying degrees of uncertainty regarding prognosis. Little is known about nurses’ end-of-life (EoL) decision-making practice across cultures. This project aimed to understand nurses’ EoL decision making-practices in ICU’s in different cultural contexts.
Semi-structured interviews were conducted with 51 nurses (10 in Brazil, 9 in England, 10 in Germany, 10 in Ireland and 12 nurses in Palestine). They were purposefully and theoretically selected to include nurses having a variety of characteristics and experiences concerning EoL decision-making.
The study used grounded theory to inform data collection and analysis. Interviews were facilitated by using key questions. The comparative analysis of the data within and across data generated by the different research teams enabled researchers to develop a deeper understanding of EoL decision-making practices in the ICU. Ethical approval was granted in each of the participating countries and voluntary informed consent obtained from each participant.
With thanks to the international nurses’ end-of-life decision making in intensive care research group.
The study highlights the importance ICU nurses bestow on relationships and dialogue in EoL decision making and care. In all five cultures, despite some differences regarding perceptions of nurse autonomy, ICU nurses are actively engaged in negotiating a reorientation for cure to care and towards a broader holistic care orientation.
They engage in negotiated reorienting which through consensus seeking and emotional holding enables a consensus to be reached in relation to EoL care. Importantly, the theory suggests how patients and families may be facilitated to have experience of a good death in a technologically focused environment.
Despite the challenges of working in an environment that is focused on treatment and cure, the theory suggests that nurses stay focused on the needs and suffering of patients and families.
The theory suggests that nurses have a clearly articulated role to play in EoL decision-making. Further it suggests the complexity of their role in an area of practice that is medically-dominated. This research reveals the value of culturally sensitive multi-professional EoL ethics education and ethics support.
Ethical and clinical EoL decision-making are inextricably connected and confidence and confidence in area could be enhanced. Future research could interrogate further the impact of nurses’ cultural and religious perspectives on EoL decision-making. This research highlighted resource constraints and lack of availability of palliative care in Palestine.
In Brazil, palliative care is not a compulsory component of health professional education and it was suggested by German colleagues that nurses who were more competent in palliative care were more comfortable with EoL decision-making. The research also identified a need for nurses and nursing organisations to advocate for the interests of patients and families where these services were under-developed.
The core category that emerged was ‘negotiated reorienting’. Whilst nurses do not make the ‘ultimate’ EoL decisions, they engage in two core practices: consensus seeking (involving coaxing, information cuing and voice enabling); and emotional holding (creating time-space and comfort giving).
There was consensus regarding the core concept and core practices employed by nurses in the ICU’s in five countries. However, there were some discernible differences regarding the power dynamics in nurse-doctor relationships, particularly in relation to the cultural perspectives on death and dying and in the development of palliative care. The research suggests the need for culturally sensitive education and bereavement support in different cultural contexts.
Read an IJNS article on the project findings.
Research groups and centres
Our research is supported by research groups and centres.