UNDERSTANDING PATIENTS’ RELATIVES’ ROLE IN ICU DECISION-MAKING

• Research type

  Research Study

• Full title

  UNDERSTANDING PATIENTS' RELATIVES' ROLE IN ICU DECISION-MAKING: HOW THE MENTAL CAPACITY ACT CAN LEAD TO BETTER OUTCOMES FOR PATIENTS, THEIR FAMILIES, AND HEALTH CARE PROFESSIONALS

• IRAS ID

  345638

• Contact name

  Therese Callus

• Contact email

  m.t.callus@reading.ac.uk

• Sponsor organisation

  University of Reading

• Duration of Study in the UK

  1 years, 2 months, 0 days

• Research summary

  Most intensive care patients depend upon others to make critical care decisions on their behalf. Although the Mental Capacity Act 2005 uses the “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. Better understanding is needed about whether, and how, clinicians and family members discuss the patient’s preferences; and indeed, even when they do, whether this is a true reflection of the patient’s perspective. Further, there is no consistent national approach to recording decisions. By surveying patients’ relatives or carers, this project offers an opportunity to understand the role of these others in each decision, especially in respect of potential conflict between decision-makers, and the best ways of supporting and guiding practice.
  Importantly, although the law (Mental Capacity Act 2005) provides for relatives/carers to be consulted in the process, very little guidance is given as to what their role actually involves and how in practice they are included in making decisions about the patient who in most cases, will not be able to communicate their own wishes. Guidance in the Code of Practice on the Mental Capacity Act is contradictory in places and case law interpretation of the relatives’ role inconsistent.
  This collaborative study will gather and interpret empirical data, linking the practical aspects of clinical decision-making with the development of a normative framework for regulating such decisions, and the role that relatives do and can play in this process.
  

• REC name

  East of England - Cambridge South Research Ethics Committee

• REC reference

  25/EE/0086

• Date of REC Opinion

  17 Apr 2025

• REC opinion

  Favourable Opinion