Background:

Intensive care treatment can be life-saving, but it is invasive and distressing for patients receiving it and it is not always successful. Deciding whether or not a patient will benefit from intensive care is a difficult clinical and ethical challenge.

Objectives:

To explore the decision-making process for referral and admission to the intensive care unit and to develop and test an intervention to improve it.

Methods:

A mixed-methods study comprising (1) two systematic reviews investigating the factors associated with decisions to admit patients to the intensive care unit and the experiences of clinicians, patients and families; (2) observation of decisions and interviews with intensive care unit doctors, referring doctors, and patients and families in six NHS trusts in the Midlands, UK; (3) a choice experiment survey distributed to UK intensive care unit consultants and critical care outreach nurses, eliciting their preferences for factors used in decision-making for intensive care unit admission; (4) development of a decision-support intervention informed by the previous work streams, including an ethical framework for decision-making and supporting referral and decision-support forms and patient and family information leaflets. Implementation feasibility was tested in three NHS trusts; (5) development and testing of a tool to evaluate the ethical quality of decision-making related to intensive care unit admission, based on the assessment of patient records. The tool was tested for inter-rater and intersite reliability in 120 patient records.

Results:

Influences on decision-making identified in the systematic review and ethnographic study included age, presence of chronic illness, functional status, presence of a do not attempt cardiopulmonary resuscitation order, referring specialty, referrer seniority and intensive care unit bed availability. Intensive care unit doctors used a gestalt assessment of the patient when making decisions. The choice experiment showed that age was the most important factor in consultants’ and critical care outreach nurses’ preferences for admission. The ethnographic study illuminated the complexity of the decision-making process, and the importance of interprofessional relationships and good communication between teams and with patients and families. Doctors found it difficult to articulate and balance the benefits and burdens of intensive care unit treatment for a patient. There was low uptake of the decision-support intervention, although doctors who used it noted that it improved articulation of reasons for decisions and communication with patients.

Limitations:

Limitations existed in each of the component studies; for example, we had difficulty recruiting patients and families in our qualitative work. However, the project benefited from a mixed-method approach that mitigated the potential limitations of the component studies.

Conclusions:

Decision-making surrounding referral and admission to the intensive care unit is complex. This study has provided evidence and resources to help clinicians and organisations aiming to improve the decision-making for and, ultimately, the care of critically ill patients.

Future work:

Further research is needed into decision-making practices, particularly in how best to engage with patients and families during the decision process. The development and evaluation of training for clinicians involved in these decisions should be a priority for future work.

Study registration:

The systematic reviews of this study are registered as PROSPERO CRD42016039054, CRD42015019711 and CRD42015019714.

Funding:

The National Institute for Health Research Health Services and Delivery Research programme. The University of Aberdeen and the Chief Scientist Office of the Scottish Government Health and Social Care Directorates fund the Health Economics Research Unit.

Article history

The research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 13/10/14. The contractual start date was in February 2015. The final report began editorial review in May 2018 and was accepted for publication in January 2019. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors’ report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.

Declared competing interests of authors

Gavin Perkins reports grants from the National Institute for Health Research (NIHR) during the conduct of the study and non-financial support from Intensive Care Foundation (Camberwell, VIC, Australia) outside the submitted work. Karen Rees reports grants from NIHR during the conduct of the study. Helen Parsons reports grants from NIHR during the conduct of the study. Zoe Fritz has received grant funding from the Wellcome Trust (London, UK) outside this study and is on the executive committee of the Resuscitation Council (UK) (London, UK); expenses are covered for meetings. Zoe Fritz is also chairperson of the Strategic Steering Group for ReSPECT (Recommended Summary Plan for Emergency Care and Treatment); expenses are covered for meetings. Sarah Symons is a member of the Bath Clinical Ethics Advisory Group and has received payment from the University of Warwick for time taken to comment on the study documents as patient and public involvement co-investigator. Anne Slowther is a member of the Board of Trustees of the UK Clinical Ethics Network (Newcastle upon Tyne, UK) and the Institute of Medical Ethics (St Helens, UK). She has received funding in grants from NIHR as a co-investigator outside this study.