The need for effective End-of-Life (EoL) interventions is imperative if patients are to experience a good death and their family members are to receive appropriate levels of support.
Person-centred care places patients and their families at the heart of care decisions, is central to UK health policy (Health and Social Care Act, 2012) and is internationally recognised as a core aspect of high-quality healthcare (Giusti et al., 2020). Traditional outcome measures utilised in critical care studies such as length of stay, mortality and organ dysfunction have limited value within EoL care in critical care as the outcomes focus on system measures rather than outcomes of importance to patients and families. Furthermore there remains heterogeneity in outcomes evaluated in EoL care studies with a lack of consensus on which outcome is the most appropriate rendering interpretation and comparison of findings difficult (Connolly et al., 2018; Dinglas et al., 2020).
There is currently no core outcome set (COS) available for EoL care within a critical care context. A COS concentrating on outcomes that are important to both critical care patients and their families is therefore paramount to mitigate heterogeneity in outcomes evaluated and reported whilst simultaneously enabling data pooling, meta-analysis and reducing the risk of selective outcome bias and research waste.
To develop a person-centred core outcome set for the evaluation of interventions in end-of-life care in critical care.
Objectives
• To identify a list of person-centred outcome measures previously reported in studies evaluating interventions in EoL care in Critical Care
• To explore additional person-centred outcomes relevant to EoL care in Critical Care using semi-structured interviews with bereaved families of critical care decedents
• To define a core outcome set for evaluation of interventions to improve EoL care in Critical Care through a modified Delphi survey and consensus group meeting.
References
Connolly, B., Denehy, L., Hart, N., Pattison, N., Williamson, P., & Blackwood, B. (2018). Physical Rehabilitation Core Outcomes In Critical illness (PRACTICE): Protocol for development of a core outcome set. Trials, 19(1), 1–8. https://doi.org/10.1186/s13063-018-2678-4
Curtis, J. R., & Vincent, J. L. (2010). Ethics and end-of-life care for adults in the intensive care unit. The Lancet, 376(9749), 1347–1353. https://doi.org/10.1016/S0140-6736(10)60143-2
Dinglas, V. D., Cherukuri, S. P. S., & Needham, D. M. (2020). Core outcomes sets for studies evaluating critical illness and patient recovery. Current Opinion in Critical Care, 26(5), 489–499. https://doi.org/10.1097/MCC.0000000000000750
Efstathiou, N., & Clifford, C. (2011). The critical care nurse’s role in end-of-life care: issues and challenges. Nursing in Critical Care, 16(3), 116–123. https://doi.org/10.1111/j.1478-5153.2010.00438.x
Giusti, A., Nkhoma, K., Petrus, R., Petersen, I., Gwyther, L., Farrant, L., Venkatapuram, S., & Harding, R. (2020). The empirical evidence underpinning the concept and practice of person-centred care for serious illness: A systematic review. BMJ Global Health, 5(12). https://doi.org/10.1136/bmjgh-2020-003330
Health and Social Care Act, (2012) (testimony of Department of Health). https://www.legislation.gov.uk/ukpga/2012/7/contents/enacted
Sally Humphreys Principal Investigator, University of Hertfordshire
Professor Natalie Pattison, University of Hertfordshire - Supervisory Team
Dr Rosemary Godbold, University of Hertfordshire - Supervisory Team
Dr Nazir Lone, University of Edinburgh - Supervisory Team
Rebecca Scott, University of Hertfordshire
Joan Lomas, East and North Hertfordshire NHS Trust
Disease Category: Other
Disease Name: Critical illness
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Palliative
- Charities
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Families
- Patient/ support group representatives
- Researchers
- Service providers
- COS for clinical trials or clinical research
- COS for practice
- Consensus meeting
- Delphi process
- Interview
- Systematic review
The development of a critical care end-of-life COS will consist of a mixed-methods study incorporating the following phases:
a) A mixed methods systematic review on outcomes reported in EoL care in adult critical care research focusing on person-centred outcomes
b) An in-depth longitudinal exploration of what patients and their families feel are important outcomes measures in EoL care in critical care through semi-structured qualitative interviews and/or focus groups with bereaved families
c) A Delphi study to identify a set of core outcomes/key quality indicators from those selected in the literature review and family interviews
d) A consensus meeting to determine the final outcomes in the COS