The Royal College of Physicians 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. The guidelines 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. 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. The six chapters cover:
Definitions and criteria for diagnosis of vegetative and minimally conscious states
This includes specific definitions for vegetative state (VS) and the minimally conscious state (MCS), the diagnostic criteria for each, how to tell if someone is emerging from these states, and the conditions under which it is possible to diagnose ‘continuing’ or ‘permanent’ VS or MCS.
Assessment, diagnosis and monitoring
- when the patient should be referred or transferred to a specialist unit for managing PDOC following brain injury
- how to exclude treatable causes of PDOC
- which tests to use, how to make the specific diagnosis of VS or MCS
- the involvement of families in assessment of patients
- which assessment tools and techniques should be used including scanning, the use of stimulation, and the role of medication
- when to re-evaluate the patient’s condition
- how to recognise and control possible pain and depression.
The care pathway from acute to longer-term management
This stresses the importance of using a specialist neurorehabilitation team for evaluation and management, making sure the patient is treated in a unit with specialist expertise and not in a general ward. It sets out the programme of care for the patient, how their care should be funded, and plans for the review and monitoring of care.
There should be a two-way information exchange with the family including both the continuing offer of support, counselling and education and gathering information from families. The family should be involved in choosing the place for ongoing care of the patient, whether this is in a nursing home or specialist hospital unit. If the patient is likely to remain in a vegetative state, ie without any level of awareness, the family should be informed. They should be involved in and receive ongoing support with the subsequent legal, ethical and practical processes. Specifically the guideline emphasises that healthcare carries full responsibility for initiating and funding the legal process and also it carries full responsibility for the decision made; the family provide vital information about the patient but do not pay and do not decide.
Ethical and medico-legal issues
This chapter explains how decisions are made on behalf of patients who are not capable of making decisions about their treatment, within the legal framework set out by the Mental Capacity Act 2005. It also explains how decisions are made by the courts in the best interests of patients, what happens if the person has appointed someone else to make decisions on their behalf in advance or has written an Advance Decision to Refuse Treatment (ADRT), how the family can help contribute to the information needed to help the courts make a decision, and the processes and people involved in the formal decision-making, with suggested timescales for decision-making meetings.
End-of-life decisions and care
This chapter covers decisions about the kind of care the patient should receive, including whether or not the patient would benefit from being resuscitated in the event that their heart stops beating (cardiopulmonary resuscitation – CPR), and the withdrawal of life-sustaining treatment. It explains that some treatments can be given and withdrawn without applying to the courts for a decision, for example, antibiotics for an infection, but that the decision to withdraw clinically assisted nutrition and hydration (CANH) has to be reviewed by the Court of Protection.
It also discusses the process of withdrawal in cases where a decision has been made that CANH can be withdrawn.
It also explains how everyone can help by thinking about their own wishes in advance and drawing up a legal Advance Decision to Refuse Treatment. For further details visit http://www.rcplondon.ac.uk/resources/prolonged-disorders-consciousness-national-clinical-guidelines