Title: Gatekeeping in intensive care: Understanding and improving the decision-making process surrounding admission to the intensive care unit
Funder: Department of Health and Social Care

Abstract: This research focusses on the process of referral and admission decisions for intensive care and the factors that influence these decisions. Intensive care unit (ICU) admission offers potentially lifesaving treatments but is associated with burdens of distressing and invasive interventions. Patients not admitted to ICU are more likely to die and timely admission to the ICU has better outcomes. ICU mortality is around 30% and for those who survive ICU hospital mortality is over 10%. ICU survivors often need on-going medical care for many years. Predicting who will benefit from ICU, and who to admit presents a difficult clinical and ethical challenge. There are currently no national guidelines on criteria or processes for making these decisions. The limited empirical evidence suggests that there is marked variability in decision-making among clinicians; that non-medical factors such as age and resources influence decision-making, that clinicians demonstrate a prognostic pessimism that does not correlate with objective data; and decisions are not communicated to patients and families. This variability suggests that clinicians may be influenced by a range of different factors in their decision-making processes which in turn raises concern about potential inequity for patients. There is a clear need to ensure that the decisions are consistent, transparent, and ethically justifiable, and that clinicians and families are supported in the process. This study will explore the current experience of clinicians and families with regard to these decisions; identify the key factors that stakeholders and the public consider should be considered in the decision-making process; and develop and implement a support framework to facilitate decision-making. The project has 4 work packages(WP). WP1 will describe current practice and explore the experience of key participants: ICU physicians, clinicians referring patients to ICU, and patient’s families. Data will be collected through interviews and observation of the decision-making process at six hospitals across two NHS regions. We will examine how evidence and values influence decisions. Views will be taken on how decisions should and should not be made. Data will be analysed using thematic and ethical analysis to provide both descriptive and normative insights into the decision making process. WP2 We will conduct a Discrete Choice Experiment, designed using factors identified in WP1 and in the literature, to identify preferences of ICU physicians and ICU outreach nurses regarding factors determining patients’ admission to ICU. In addition we will use recent advances in DCE methodology to investigate decision rules used by respondents when making their choices. WP3: Informed by WPs 1&2 we will develop, implement, and test a decision support framework to guide clinicians through the decision making process together with a patient/family support document to help them understand and participate in the process. A consensus conference of key stakeholders will help to refine the support tool. WP4: We will develop and test an evaluation tool for assessing the impact of the decision support framework on decision-making. We will conduct focussed systematic reviews of the relevant literature to inform each stage of the project. Outputs: This project will provide new information on ICU referral and admission decisions and will deliver a support framework to guide clinicians through this difficult proces

Lay abstract: NHS intensive care bed capacity is limited and under constant pressure. This is likely to increase with an ageing population. Admission to an intensive care unit (ICU) allows critically ill patients access to life-saving treatments but this care involves invasive and distressing interventions. Approximately one in three people admitted to ICU do not survive to go home. For those that do survive, many continue to have serious health problems. Given the burdens of treatment therapy on an intensive care unit and the sometimes limited benefit limited prognosis for many critically ill patients, admission to an ICU bed will not be appropriate for all patients. Clinicians must decide whether different treatment less invasive care might achieve the same goals, or whether the burdens of ICU care outweigh any potential benefit and that end of life (palliative) care is in the best interests of a particular patient. However, determining which patients will benefit from ICU and who will be harmed is not straightforward. Most patients considered for ICU admission are too ill to make decisions for themselves and clinicians therefore must make difficult practical and ethical judgements about balancing the benefits of ICU with the burdens of care. Despite this uncertainty there is no agreed process for deciding who should be admitted to ICU. Research suggests that there is large variation in how decisions regarding admission to ICU are made, and that doctors under-estimate the benefit that ICU can provide to certain groups of patients, including the elderly. Evidence also suggests that admission decisions are seldom explained to patients and families. Given the serious consequences of these decisions and the difficult circumstances under which they are made, it is important that they are based on good evidence, ensure fairness for all patients, and take into account the values relevant to patients and their families. This research will investigate how these decisions are made and how we can improve this process. We will conduct a systematic review current research evidence, of the literature to inform our research. We will identify current practice and explore the experiences and perspectives of those involved in these decisions (ICU doctors, doctors referring patients to ICU and patients’ families), and their views on how these decisions should be made. We will do this by observing the process of decision-making and interviewing health professionals and families in six NHS hospitals across the East and West Midlands. Information from the interviews and observations will be used to develop a questionnaire survey that will be sent to ICU doctors and nurses to further investigate the factors that they consider most important in making these decisions. From the analysis of all the information gathered, we will then develop a decision support framework to guide doctors through the decision making process and provide information for patients and their families. This framework will be refined at a consensus conference including health professionals, policy makers and patient groups. We will pilot it in three NHS trusts chosen to represent a range of hospital and ICU sizes. We will study how the framework has been used and whether it is fulfilling its aims. Little is known about how decisions regarding ICU admission are made, or how they should be made for patients in the NHS. By studying this area of clinical practice we will develop a mechanism to improve the quality and consistency of decision-making surrounding access to ICU for critically ill patients.

Research activity codes: 7.2 END OF LIFE CARE;7.3 MANAGEMENT AND DECISION MAKING
Health categories: GENERIC HEALTH RELEVANCE