The Royal College of Physicians(RCP) has launched new guidelines on the diagnosis and management of people with prolonged disorders of consciousness (PDOC). They should help healthcare staff, families, carers, friends and others understand the clinical, ethical and legal issues surrounding the care of these patients.
Prolonged disorders of consciousness is a term covering patients remaining in a coma, vegetative state (VS), and minimally conscious state (MCS) after a brain injury. The guidelines replace the RCP’s 2003 working party report 'The vegetative state'. The new guidelines have an expanded remit, updated terminology, full recognition of the Mental Capacity Act 2005 and have been produced according to the international AGREE criteria.
Healthcare staff, families, carers and representatives of patients with a prolonged disorder of consciousness can find the clinical and ethical situations challenging. The guidelines explain clearly who is responsible for making decisions about the care of patients with these disorders, including end-of life care, explaining the processes involved. The guidelines are based on the existing legal position in England and Wales, and do not discuss or debate the law on assisted dying.
The guidelines also emphasise the need to provide the patient’s family with information, education and support, as well as listening to families and friends. They specifically highlight the key role of families in the ‘best interests’ decision-making process. Family members provide important insights into the character, beliefs and likely wishes of the patient and can also help assess any changes in behaviour or responsiveness.
The report also recommends that there should be at least one designated specialist team for the assessment of people with prolonged disorders of consciousness commissioned under the specialised rehabilitation programme in each of the 12 clinical senates in England.
The six chapters cover:
• Definitions and criteria for diagnosis of vegetative and minimally conscious states.
• Assessment, diagnosis and monitoring.
• The care pathway from acute to longer-term management.
• Ethical and medico-legal issues.
• End-of-life decisions and care.
• Service organisation and commissioning.
Professor Lynne Turner-Stokes, consultant in rehabilitation medicine, Northwick Park Hospital; Herbert Dunhill Professor of rehabilitation, King’s College London, and chair of the Core Executive and Editorial Group, said: “The guidelines address some highly emotive and topical areas in which there is currently a dearth of formal research-based evidence to guide practice. The Guideline Development Group was deliberately chosen to represent a wide range of opinion. Some areas provoked rigorous and prolonged discussion, but we have endeavoured to provide a balanced view, based on the best evidence available at the current time.
“In this rapidly changing field the recommendations are likely to need updating as new evidence emerges and as an international consensus develops. In the meantime, we have aimed to provide a practical and useful source of advice for clinicians who work with this complex group of patients.”
To download the guidelines, visit: http://www.rcplondon.ac.uk/resources/prolonged-disorders-consciousness-national-clinical-guidelines
