12.12.13
RCP launches guidelines for patients with prolonged disorders of consciousness
New guidelines have been published by the Royal College of Physicians (RCP) to improve the diagnosis and management of people with prolonged disorders of consciousness.
The guidelines, developed to help clinicians, families, carers and friends, explain who is responsible for making decisions about the care of patients with these disorders.
The RCP has called for clinicians to provide information to families and listen to their input when making decisions about patients.
The guidelines recommend a new national registry for patients with an agreed dataset incorporated into the UK Rehabilitation Outcomes Collaborative (UKROC); at least one designated specialist team for the assessment of people with prolonged disorders of consciousness commissioned under the specialised rehabilitation programme.
Definition of prolonged disorders of consciousness, assessment, diagnosis and monitoring, care pathway, ethical and legal issues, end of life decisions and care, service organisation and commission are all covered by the new guidance.
Dr John McCann, BSRM president and consultant in Rehabilitation Medicine in Belfast said: “The optimum management of patients in Vegetative and Minimally Conscious States remains one of our greatest challenges. These guidelines will greatly assist myself and other practitioners in future management and care for these patients and their families.”
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.
“In this rapidly changing field the recommendations are likely to need updating as new evidence emerges and as 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.”
Professor Derick Wade, consultant in rehabilitation medicine, Oxford Centre for Enablement; Professor of neurological rehabilitation, University College London, and co-chair, said: “It has the potential to improve dramatically the experience of care and treatment as seen by both patients and families, and also to improve significantly the outcome for patients, and thus for society.”
And Dr Diane Playford, consultant in neurology, Institute of Neurology, Queen Square; Reader in neurological rehabilitation, University College London and co-chair, said the guideline will result in better care for patients and their families.
Professor Jenny Kitzinger (coordinator for service user input), Professor of communications research, Cardiff University and co-director of the Cardiff-York Chronic Disorders of Consciousness Research Centre, said: “The guidelines provide clear summaries of the legal situation and, I hope, will help family members to represent the wishes of their relative, and ensure clinicians gather this information, and take it into account, when making “best interests” decisions about vegetative and minimally conscious patients.”
Dr Peter Carter, chief executive & general secretary of the RCN commented: “When a person suffers an injury or illness resulting in a prolonged disorder of consciousness, they rely on families, loved ones and medical staff to make irrevocable decisions about their life.
“Sadly, there can currently be some confusion in how best to care for this group of patients, and indeed how to support carers and families. 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.”
For more on this story, including an interview with Professor Lynne Turner-Stokes, see the Jan/Feb 2014 edition of NHE. Subscribe here: www.nationalhealthexecutive.com/subscribe
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