New guidelines on the diagnosis and management of people with prolonged disorders of consciousness 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 coma, vegetative state (VS), and minimally conscious state (MCS) after a brain injury.
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 also emphasise the need to provide the patient’s family with information, education and support, as well as listening to families and friends.
Family members provide important insights into the character, beliefs and likely wishes of the patient. Families and friends who spend time with the patient are also important because they can help assess any changes in behaviour or responsiveness.
There are no data on the number of patients with prolonged disorders of consciousness in England and Wales. The guidelines recommend a new national registry for patients, with an agreed dataset, incorporated into the UK Rehabilitation Outcomes Collaborative (UKROC). 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.
Dr Peter Carter, chief executive of the Royal College of Nursing said:
“This guidance is much needed and has been informed by the nursing experience. It provides clarity and in-depth information in terms of treatment as well as emotional support and ethical considerations.
“No guidance will ever make these decisions easy, but nurses will welcome it as a means of informing their practice in a difficult and highly charged area.”
Dr Diane Playford, consultant in neurology, Institute of Neurology, Queen Square; Reader in neurological rehabilitation, University College London and co-chair, said: “This guideline provides a practical guide for the management of people with a persisting disorder of consciousness. It will result in better care for both patients and their families, defining what should be done to ensure accurate diagnosis, and describing clear pathways for immediate and long term management, as well as thoughtful processes around end of life decision and care.”
Prolonged disorders of consciousness (PDOC) is available on the RCP website.