End of life care in intensive care settings: a case study approach to explore decision making and processes

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Description/Abstract

Up to one third of patients admitted to Intensive Care Unit die prior to being discharged from hospital. For about ten per cent of these patients, decisions are made to stop active treatments, such as help with their breathing or use of life sustaining drugs, prior to their death. There has been little research on the United Kingdom about dying on Intensive Care Units. This means that we do not know why health care professionals make the decisions they do, or what patients and families want. This study provides some understanding of these issues in End of Life Care in Intensive Care.

This is a research study that explores how decisions are made about end of life care in Intensive Care, and about what care is provided to patients when these decisions are made. To help our understanding in this area, we looked at the in-depth care and treatment of 18 individuals who died in two Intensive Care Units in the South of England. All these people died after a decision was made to stop active treatment. After death, each patient’s health care notes were reviewed to see what decisions were recorded and what care they received. We talked with the key doctors and nurses involved with that person’s care to get their perspective on what decisions were made and why, and on the care that was provided. Six weeks after the death, we interviewed the patient’s designated next-of-kin about their experiences. We then brought together all the information on each person to identify key factors involved in end of life decision-making, staff and relatives’ experience of such decisions, and the care processes involved.

Findings from the interviews indicate that most patients in this study were admitted to the Intensive Care Units with an expectation of cure and recovery. Initial care focussed on this expectation. However in this study, patients did not respond to intensive therapies that led to discussions about whether it was in the patient’s best interest to continue treatment. Discussions were held with families to talk about the next step in care and their expectations of what this was. After discussions had taken place, and with the agreement of all families, treatments were withdrawn.

The findings in this study show us that end of life is an emotive and complex area in health care. Specific findings have helped us understand what staff and families find most challenging in end of life care and we can use these findings to help train staff to: communicate more effectively with family members; make decisions that are fully informed by the views of family members and ensure that areas of care, important to bereaved families, receive the highest level of attention.