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Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines

The Prolonged disorders of consciousness national clinical guidelines are a major contribution to clinical and ethical standards of care for people with prolonged disorders of consciousness (PDOC) – including vegetative (VS) and minimally conscious states (MCS) – following sudden onset brain injury, not only in the UK but internationally. For England and Wales, they provide much-needed clarity on legal decision-making.

Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines are an updated version of the 2013 guidelines and incorporate guidance on the new legal stance with regards to the withdrawal of clinically assisted nutrition and hydration (CANH), and developments in assessment and management. 

The Prolonged disorders of consciousness guidelines were developed by the PDOC Guideline Development Group, which included representation of patients/users and a wide range of stakeholders and professionals involved in the management of patients with PDOC.

Concise, clear information

The guidelines offer updated guidance on the diagnosis, assessment, care and management of patients with PDOC. They support doctors, families and health service commissioners to ensure that everyone is aware of their legal and ethical responsibilities.

The guidelines cover:

  • Definitions and terminology of prolonged disorders of consciousness (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 CANH, and management of end-of-life care for PDOC patients
  • Service organisation and commissioning.

People in a vegetative or minimally conscious state present a complex array of medical, ethical and legal challenges. The guideline also makes recommendations for development of a register and an agreed minimum dataset to gather systematic longitudinal data in order to identify factors that predict outcome and emergence from a minimally conscious state.

Guidance on clinically-assisted nutrition and hydration

Recent interim guidance on CANH from the Royal College of Physicians (RCP) and the British Medical Association (BMA), and endorsed by the General Medical Council (GMC), was published in December 2018 in response to a number of legal developments. You can access the guidance on the BMA website.

The guidance aims to ensure the law is followed correctly and to give practical advice to health professionals about how to make these difficult decisions, based on what is in the best interests of the individual patient.

Help for families and friends

By definition, VS and MCS patients are unable to make decisions regarding their own care and treatment. The role of patients’ families, and their need for support and information, is emphasised throughout.

The free electronic annexes* provide a range of guidance and tools designed to enhance the practical care and assessment of these patients, including tools and information for their families.

*Annexes 2g, 4c, 6a and 6b available soon.

To purchase a printed copy of the guidelines please visit the RCP shop.

Supplementary guidance for managing tracheostomised patients with prolonged disorders of consciousness during COVID-19 is available here.