Intensive care decision-making, survival and dying well: a mixed methods study with people who have been intensive care patients

Item Type: Journal Article

Authors: Donaldson, Thomas;Keywood, Kirsty;Frith, Lucy and Holm, Søren

Publication Date: 2026

Journal: Anaesthesia 81(10), pp. 1367–1377

Abstract: 

Introduction Admission to the ICU involves experiential burdens and a risk of a negative dying experience if patients do not survive their critical illness. Many patients who are critically unwell, or their surrogate decision-makers, must decide about accepting ICU treatment without knowing what it is like. People who have been through ICU treatment can provide useful insights into what it might be like to die in ICU and what chance of survival makes ICU treatment acceptable to them. 

Methods This study utilised a mixed methods approach involving questionnaires and semi-structured interviews which were analysed using a reflexive thematic analysis approach. This was done to provide a deep and rich analysis of how participants' experiences of ICU treatment and end-of-life wishes affected their reflections about what it might be like to die on an ICU, and their willingness to accept ICU treatment again in the future. 

Results Twenty-six people who had experienced ICU as patients were interviewed. Whilst some positive experiences were reported, participants thought the negative experiences associated with ICU made it likely that dying on ICU would be a negative dying experience. Being a patient in an ICU involved a confrontation with mortality, loss of control and total dependence, and was described as a transformative experience. Participants considered the chance of survival to be an important consideration in shared decision-making with ICU clinicians about ICU treatments. The median chance of survival that made ICU treatment acceptable was 30%. 

Discussion An understanding of the experiences associated with being a patient in the ICU can inform how patients and clinicians consider the risk-benefit analysis of ICU treatment. The experiential harms of ICU admission and the risk of ICU treatment resulting in a negative dying experience may outweigh the survival benefit that ICU treatment will offer a patient when there is a low chance of survival.

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"Living with dying": The evolution of the family members' experience of mechanical ventilation.

Crit Care Med. 2008 Nov 28; [Epub ahead of print] LinkOut

Sinuff T, Giacomini M, Shaw R, Swinton M, Cook DJ.

From the Department of Critical Care Medicine (TS), Sunnybrook Research Institute, Sunnybrook Health Sciences Centre and Interdepartmental Division of Critical Care, University of Toronto, Toronto, ON; Department of Clinical Epidemiology and Biostatistics (MG), Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, ON; Departments of Sociology (RS), Medicine, and Clinical Epidemiology and Biostatistics (DJC), McMaster University, Hamilton, ON; and School of Nursing (MS), McMaster University, Hamilton, ON, Canada.

BACKGROUND:: Communication with families about mechanical ventilation may be more effective once we gain a better understanding of what families experience and understand about this life support technology when their loved ones are admitted to the intensive care unit (ICU).

METHODS:: We conducted in-depth interviews with family members of 27 critically ill patients who required mechanical ventilation for >/=7 days and had an estimated ICU mortality of >/=50%. Team members reviewed transcripts independently and used grounded theory analysis.

RESULTS:: The central theme of family members' experience with mechanical ventilation was "living with dying." Initial reactions to the ventilator were of shock and surprise. Family members perceived no option except mechanical ventilation. Although the ventilator kept the patient alive, it also symbolized proximity to death. In time, families became accustomed to images of the ICU as ventilation became more familiar and routine. Their shock and horror were replaced by hope that the ventilator would allow the body to rest, heal, and recover. However, ongoing exposure to their loved one's critical illness and the new role as family spokesperson were traumatizing.

CONCLUSIONS:: Family members' experiences and their understanding of mechanical ventilation change over time, influenced by their habituation to the ICU environment and its routines. They face uncertainty about death, but maintain hope. Understanding these experiences may engender more respectful, meaningful communication about life support with families.

PMID: 19050614 [PubMed - as supplied by publisher]

Quality of dying in a New Zealand teaching hospital.

Glasgow JL, McLennan SR, High KJ, Celi LA. Related Articles, LinkOut

Qual Saf Health Care. 2008 Aug;17(4):244-8. PMID: 18678719
[PubMed - indexed for MEDLINE]