New guidelines for brain injury patients

Author: Mark Gould

The Royal College of Physicians (RCP) has today published new guidance on the diagnosis, assessment, care and management of patients with prolonged disorders of consciousness following brain injury.

The college says there is no reliable information on how many people may be in prolonged disorders of consciousness (PDOC) being cared for at home or in nursing/care homes across the UK. Estimates vary widely between 4,000 and 16,000 patients with long-standing vegetative state (VS) and perhaps three times that number in a minimally conscious state (MCS). 

Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines is an updated version of the 2013 guidelines, incorporating guidance on the new legal situation and developments in assessment and management. It has been endorsed by 15 health organisations and will support doctors, other clinicians, families and health service commissioners to ensure that everyone is aware of their legal and ethical responsibilities.

The guidelines cover :

  • Definitions and terminology of PDOC
  • Techniques for assessment, diagnosis and review
  • Care pathways from acute to long-term management
  • The ethical and medico-legal framework for decision-making
  • Practical decision-making regarding starting or continuing life-sustaining treatments, including clinically assisted nutrition and hydration (CANH, and management of end-of-life care for PDOC patients
  • Service organisation and commissioning.

The college recommends that a national registry should be set up to collect details of patients with PDOC which would include a register of doctors experienced in managing these conditions.

The guidance has been updated following a 2018 court ruling that it is no longer necessary to apply to a court for approval to withdraw CANH provided certain conditions are met.

Legally, in the absence of a valid and applicable advance decision to refuse treatment or a Lasting Power of Attorney for Health and Welfare appointed by the patient prior to losing capacity, no one person can make decisions on behalf of the patient – this includes the patient’s family, friends or carers.

In practice, this means that the senior clinician in charge of the patient’s care is responsible for determining whether treatment should be started, continued or stopped. However, the decision they make in any of these respects must be in the patient’s best interests and families/close friends play a critical role by providing information about the patient’s prior values and beliefs to determine their likely wishes.

As it is the giving, not withdrawing of treatment that must be justified under the Mental Capacity Act 2005, the new guidelines emphasise that it is the responsibility of clinicians to initiate best interests discussions.

These should be started from an early stage following severe brain injury and re-visited on a regular basis. The guidelines offer helpful advice and resources to support this process.

Nevertheless, many clinicians still feel under-prepared for these conversations, and there is need for widespread training and education to implement this practice effectively.

Importantly, this is not just an issue for healthcare professionals – hospitals, care homes and commissioning services need to understand that this is a legal requirement, binding on everyone concerned with the management of patients with PDOC as an aspect of their duties towards them.

Chair of the PDOC Guideline Development Group, Professor Lynne Turner-Stokes said: “These guidelines set out the responsibilities for clinicians and NHS organisations who care for patients in PDOC. They provide practical advice on assessment, diagnosis and management, as well as how to go about best interests decision-making in routine clinical practice. They will help us to ensure that we have fulfilled our responsibilities to our patients, treating them in accordance with their wishes (so far as we can know them) when they are no longer able to tell us themselves.”