Dying in intensive care: An analysis of the perspectives of families and clinicians on end-of-life care

Published:September 09, 2022DOI:



      Despite a growing body of research into end-of-life care (EOLC) in intensive care units (ICUs), few studies have concurrently explored the perspectives of families and clinicians.


      The objective of this study was to identify the characteristics of high-quality EOLC in the ICU from family and clinician perspectives and by examining the care documented in medical records.


      A convergent mixed-methods study incorporating electronic health record audits (n = 20), structured interview surveys with families (n = 20), clinician surveys (n = 189), and focus groups (n = 10) was undertaken at a 30-bed, level 3 ICU at a metropolitan public adult teaching hospital in Australia. Descriptive statistics were calculated from quantitative data, and inductive thematic analysis was used to analyse qualitative data.


      Overall, families were very satisfied with EOLC and the quality of communication yet, felt that earlier, clearer communication that the patient was dying was required. Families spoke of the attentiveness, or lack thereof, by ICU clinicians and the opportunity to be present for the patient's death. The majority of ICU clinicians felt EOLC could be improved. Nurses highlighted communication challenges when family meetings were delayed. Some nurses expressed a lack of clarity of how to withdraw care, resulting in hesitancy to cease potentially inappropriate care, and to provide EOLC outside ICU practice norms. In many instances, observations, invasive monitoring, and interventions were documented after EOLC commenced. A lack of documented personal cares was also noted.


      This study provides new insights into EOLC from the dual perspectives of families and clinicians. There is a need for institutional guidelines to support ICU clinicians’ EOLC practices and education to improve clinician confidence with communication.


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        • Espinosa L.
        • Young A.
        • Symes L.
        • Haile B.
        • Walsh T.
        ICU nurses' experiences in providing terminal care.
        Crit Care Nurs Qual. 2010; 33: 273-281
        • Beckstrand R.L.
        • Callister L.C.
        • Kirchhoff K.T.
        Providing a "good death": critical care nurses' suggestions for improving end-of-life care.
        Am J Crit Care. 2006; 15: 38-46
        • Coombs M.A.
        • Addington-Hall J.
        • Long-Sutehall T.
        Challenges in transition from intervention to end of life care in intensive care: a qualitative study.
        Int J Nurs Stud. 2012; 49: 519-527
        • Ranse K.
        • Yates P.
        • Coyer F.
        Modelling end-of-life care practices: factors associated with critical care nurse engagement in care provision.
        Intensive Crit Care Nurs. 2016; 33: 48-55
        • Intensive Care National Audit and Research Centre (ICNARC)
        Key statistics from the case mix programme-adult, general critical care units.
        (2018 - 2019. ICNARC Website)
        • Australian Commission on Safety and Quality in Health Care
        National Consensus Statement: essential elements for safe and high-quality end-of-life care.
        ACSQHC, Sydney2015
        • Efstathiou N.
        • Vanderspank-Wright B.
        • Vandyk A.
        • Al-Janabi M.
        • Daham Z.
        • Sarti A.
        • et al.
        Terminal withdrawal of mechanical ventilation in adult intensive care units: a systematic review and narrative synthesis of perceptions, experiences and practices.
        Palliat Med. 2020; 34: 1140-1164
        • Ranse K.
        • Delaney L.
        • Ranse J.
        • Coyer F.
        • Yates P.
        End-of-life care content in postgraduate critical care nursing programs: structured telephone interviews to evaluate content informing practice.
        Aust Crit Care. 2020; 33: 181-186
        • Hebert K.
        • Moore H.
        • Rooney J.
        The nurse advocate in end-of-life care.
        Ochsner J. 2011; 11: 325-329
        • Fridh I.
        Caring for the dying patient in the ICU--the past, the present and the future.
        Intensive Crit Care Nurs. 2014; 30: 306-311
        • Hartog C.S.
        • Hartog C.S.
        • Reinhart K.
        • Reinhart K.
        Staff and family response to end-of-life care in the ICU.
        Curr Opin Anaesthesiol. 2018; 31: 195-200
        • Ghesquiere A.
        • Shear M.
        • Martí Haidar Y.
        Risks for complicated grief in family caregivers.
        J Soc Work End-of-Life Palliat Care. 2011; 7: 216-240
        • Curtis J.R.
        • Downey L.
        • Engelberg R.A.
        The importance and challenge of measuring family experience with end-of-life care in the ICU.
        Intensive Care Med. 2016; 42: 1179-1181
        • Stroebe M.P.
        • Schut H.P.
        • Stroebe W.P.
        Health outcomes of bereavement.
        Lancet. 2007; 370: 1960-1973
        • Hooyman N.R.
        • Kramer B.J.
        Living through loss: interventions across the lifespan.
        Columbia University, New York2006
        • Coombs M.A.
        • Parker R.
        • Ranse K.
        • Endacott R.
        • Bloomer M.J.
        An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care.
        J Adv Nurs. 2017 Jan; 73: 39-55
        • Coventry A.
        • Ford R.
        • Rosenberg J.
        • McInnes E.
        A qualitative meta-synthesis investigating the experiences of the patient's family when treatment is withdrawn in the intensive care unit.
        J Adv Nurs. 2020 Sep; 76: 2222-2234
        • Ranse K.
        • Bloomer M.
        • Coombs M.
        • Endacott R.
        Family centred care before and during life-sustaining treatment withdrawal in intensive care: a survey of information provided to families by Australasian critical care nurses.
        Aust Crit Care. 2016; 29: 210-216
        • Bloomer M.J.
        • Endacott R.
        • Ranse K.
        • Coombs M.A.
        Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand.
        J Clin Nurs. 2017; 26: 690-697
        • Gerritsen R.T.
        • Jensen H.I.
        • Koopmans M.
        • Curtis J.R.
        • Downey L.
        • Hofhuis J.G.M.
        • et al.
        Quality of dying and death in the ICU. The euroQ2 project.
        J Crit Care. 2018; 44: 376-382
        • Brooks L.A.
        • Bloomer M.J.
        • Manias E.
        Culturally sensitive communication at the end-of-life in the intensive care unit: a systematic review.
        Aust Crit Care. 2019 Nov; 32: 516-523
        • Chen C.
        • Michaels J.
        • Meeker M.A.
        Family outcomes and perceptions of end-of-life care in the intensive care unit: a mixed-methods review.
        J Palliat Care. 2020 Jul; 35: 143-153
        • Creswell J.W.
        • Plano Clark V.L.
        Designing and conducting mixed methods research.
        3rd ed. SAGE, 2018
        • Kentish-Barnes N.
        • Seegers V.
        • Legriel S.
        • Cariou A.
        • Jaber S.
        • Lefrant J.-Y.
        • et al.
        CAESAR: a new tool to assess relatives' experience of dying and death in the ICU.
        Intensive Care Med. 2016; 42: 995-1002
        • Hansen L.
        • Goodell T.T.
        • DeHaven J.
        • Smith M.D.
        Nurses' perceptions of end-of-life care after multiple interventions for improvement.
        Am J Crit Care. 2009; 18: 263-271
        • Holloway I.
        • Wheeler S.
        Qualitative research in nursing and healthcare.
        Wiley, 2013
        • Fortunatti C.P.
        • Silva N.R.
        Families on adult intensive care units: are they really satisfied? A literature review.
        Aust Crit Care. 2018; 31: 318 324
        • McLennan M.
        • Aggar C.
        Family satisfaction with care in the intensive care unit: a regional australian perspective.
        Aust Crit Care. 2020; 33: 518-525
        • Anstey M.A.
        • Litton E.
        • Trevenen M.L.
        • Thompson K.
        • Webb S.
        • Seppelt I.
        • et al.
        The prevalence of perceptions of mismatch between treatment intensity and achievable goals of care in the intensive care unit: a cross-sectional study.
        Intensive Care Med. 2019; 45: 459-467
        • Bloomer M.J.
        • Ranse K.
        • Butler A.
        • Brooks L.A.
        National position statement on adult end-of-life care in critical care.
        Aust Crit Care. 2021;
        • Ranse K.
        • Coombs M.
        The courageous practitioner during end-of-life care: harnessing creativity in everyday acts.
        Aust Crit Care. 2019; 32: 449-450