Project title

Understanding the role patients’ relatives play in ICU decision-making: How the Mental Capacity Act can lead to better outcomes for patients, their families, and healthcare professionals




Most intensive care patients depend on others to make critical care decisions on their behalf. Although the Mental Capacity Act 2005 uses the patient’s “best interests” test to enable this to happen, very little is understood about how decisions are made in these cases, who has the final say, or the process by which conclusions are reached. Furthermore, there is no consistent national approach to recording decisions. By surveying patients’ relatives or carers, this project offers an opportunity to understand their role in each decision, especially in respect of potential conflict between decision-makers.

Better understanding is needed about whether, and how, healthcare professionals (HCPs) and family members discuss the patient’s preferences, and, even when they do, whether this truly reflects the patient’s perspective. Shared decision-making has long been a policy imperative, endorsed by professional guidelines, with the aim of ensuring patient-centred care. This has been further promoted by developments in the case law and a greater emphasis on the empowerment of patients through the Mental Capacity Act 2005. However, its implementation in practice is inconsistent and challenging. Conflict with a patient’s relatives is common, and the law is relatively silent as to the role that these others play, other than communicating what they think are the patient's own wishes, beliefs, and values. Consequently, patients, their families, and HCPs need to have a clear understanding of their responsibilities in the decision-making process.


This project will adopt a phenomenological, mixed methods approach to gain insight into individual experiences of patients’ relatives in the decision-making process. Respondents will be invited to complete paper questionnaires and opt-in to semi-structured follow-up interviews. It will investigate how the preferences and wishes of the patient are elicited and evaluated through the involvement and influence of others in the decision-making process. It will also propose a normative framework to ensure consistent clinical practice and experiences for patients’ relatives when it comes to treatment decisions, in order to reduce the risk of conflict due to inadequate communication or incompatible expectations.


By surveying the involvements of patients’ relatives or carers when involved in decision-making for the patients, this project offers an opportunity to understand their role in each decision, especially when it comes to reducing potential conflict between patients’ relatives and healthcare professionals, and in ensuring that the patient’s voice is heard. Consequently, it will identify the best ways to support and guide practice, inform the development of the normative framework that will lead to better patient experience, and promote healthcare professional wellbeing.