It is striking that despite, in international terms, the small size of Rehabilitation Medicine in this country the UK can still occasionally punch above its weight in both service and basic science rehabilitation research. This is demonstrated by fMRI imagery studies from Cambridge in vegetative and minimally conscious states, and qualitative studies from Cardiff exploring the family experience of catastrophic brain injury in rehabilitation units and specialist nursing homes.
The latter was presented in person at this meeting by Jenny Kitzinger, who documented the widespread exclusion of close relatives from treatment decisions, and lack of recognition of their personal expertise in matters relating to their family member. Professor John Pickard presented fMRI and other basic science research from Cambridge and elsewhere, with a moving tribute to Dr Martin Coleman whose contribution is emphasised in the foreword to the RCP guidelines that were the focus of this meeting .1
These evidence based guidelines centre on the assessment, diagnosis and management of patients with PDoC throughout their lifetime from diagnosis to death. The guidelines emphasise the application of the Mental Capacity Act (2005) to the management of these patients and careful attention to their best interests. It is easy to lose sight of this and the failings of clinicians and current legal practice were amply demonstrated by Helen Steeple’s description of the medical and nursing chaos that followed her twin son’s brain injury; a presentation which left no dry eye in the house. The guidelines aim to assist clinicians to manage such patients within the existing legal framework. For example it is recommended that a Best Interests Meeting is held after 4 weeks of PDoC when patients are now defined as being in a Continuing Vegetative State (VS) or Continuing Minimally Conscious State (MCS). Such a meeting would offer families the opportunity to clarify the patient’s prior values and beliefs so that decisions made on the basis of their best interests can, where possible, reflect what they would have wanted if they were able to speak for themselves. A specialist service should be involved at this point with initial transfer to a specialist rehabilitation unit and then a specialist long term nursing facility. All such patients should be in receipt of NHS Continuing Health Care and the British Society of Rehabilitation Medicine (BSRM) has produced recommendations that describe, as standards, what is required by such specialist nursing homes.2 There should be diagnostic reassessment of such patients every 6-12 months using one or more of the following standardised assessments: The Wessex Head Injury Matrix, The Coma Recovery Scale – Revised and, when required, The Sensory Modality Assessment and Rehabilitation Technique (SMART). These will inform further Best Interest Meetings and Professor Derick Wade described, from his experience, how such delicate meetings could be approached in order to consider, amongst other issues, referral to the Court of Protection with reference to removal of clinically assisted nutrition and hydration (CANH). Previously clinicians have left it to families to raise this but it is a professional responsibility which Consultants in Rehabilitation Medicine should not avoid.
Removal of CANH should be considered for patients in a Permanent Vegetative State as they do not legally have an interest in further treatment. Legal presenters, chaired ably by Lord Justice McFarlane of the Court of Protection, confirmed that only about fifty cases have been referred to the court since 1989 but the judgement in all of them was that ‘it would not be unlawful to withdraw CANH’. Management thereafter may not be straightforward and Professor Rob George recommended careful proactive palliative management to ensure that any subsequent physiological distress is controlled.
The working party also drew up useful operational parameters for emergence from MCS. It introduced the term permanent MCS for patients in whom emergence from MCS is considered highly improbable. The guidelines also describe situations in which it would be legitimate for such patients to also be referred to the Court of Protection for consideration of removal of CANH. A case has been heard but it is a contentious area without as yet legal precedent.
- Royal College of Physicians. Prolonged disorders of consciousness: National Clinical Guidelines. London: RCP/BSRM, 2013
- Can be downloaded free of charge from http://www.rcplondon.ac.uk
- British Society of Rehabilitation Medicine. Specialist nursing home care for people with complex neurological disability: guidance to best practice. London: BSRM, 2012