Prolonged disorders of consciousness: new guidelines to help doctors and families

Prolonged disorders of consciousness following sudden onset brain injury: National clinical guidelines is an updated version of the 2013 guidelines, incorporating guidance on the new legal situation (see below) and developments in assessment and management.  It will support doctors, other clinicians, families and health service commissioners to ensure that everyone is aware of their legal and ethical responsibilities.

Prolonged disorder of consciousness includes vegetative state (VS) and minimally conscious state (MCS) but not short-term coma.  There is no reliable information on how many people may be in prolonged disorders of consciousness being cared for at home or in nursing/care homes across the UK. Estimates vary widely between 4,000 and 16,000 patients with long-standing VS and perhaps three times that number in MCS.  The guideline recommends that a national registry should be set up to collect details of patients with prolonged disorders of consciousness which would include a register of doctors experienced in managing these conditions.

The guidelines provide key information about assessment, diagnosis and management of VS and MCS as well as advice for supporting families.

In the early stages following severe brain injury, it is often unclear which patients will and will not regain consciousness or the level of recovery they might achieve. Proactive treatment and specialist assessment/management provide the best opportunity for maximising any potential.  However, the longer a patient remains in VS/MCS, the less likely it is that they will recover a quality of life that they would value. This poses difficult questions for families and treating teams about whether the patient would want to continue to receive life-sustaining treatment under certain circumstances.

While decision-making starts from the strong presumption that it is in the patient’s best interests to prolong life, this presumption can be rebutted if there is evidence that the patient him/herself would not want to receive that treatment under the circumstances that have arisen.

Updating the guidance following the change in the law

Patients with prolonged disorders of consciousness may receive a number of life-sustaining treatment including clinically assisted nutrition and hydration (CANH).  The guidance has been updated following a 2018 court ruling1 that it is no longer necessary to apply to a court for approval to withdraw CANH provided certain conditions are met, specifically:

• the provisions of the Mental Capacity Act (MCA) 2005, which covers decision-making for those who lack capacity have been followed. The MCA highlights the responsibility of clinicians to ensure that any treatment or intervention is given in the patient’s best interests taking into account their likely wishes and
• relevant guidance is observed (including clinical/professional guidance) and
• there is agreement that continued treatment is not in the best interests of the patient.

Legally, in the absence of a valid and applicable Advance Decision to Refuse Treatment or a Lasting Power of Attorney for Health and Welfare appointed by the patient prior to losing capacity, no one person can make decisions on behalf of the patient – this includes the patient’s family, friends or carers. In practice, this means that the senior clinician in charge of the patient’s care is responsible for determining whether treatment should be started, continued or stopped. However, the decision they make in any of these respects must be in the patient’s best interests and families/close friends play a critical role by providing information about the patient’s prior values and beliefs to determine their likely wishes.

As it is the giving, not withdrawing of treatment that must be justified under the Mental Capacity Act (MCA) 2005, the new guidelines emphasise that it is the responsibility of clinicians to initiate best interests discussions. These should be started from an early stage following severe brain injury and re-visited on a regular basis. The guidelines offer helpful advice and resources to support this process. Nevertheless, many clinicians still feel under-prepared for these conversations, and there is need for widespread training and education to implement this practice effectively.

Importantly, this is not just an issue for healthcare professionals – hospitals, care homes and commissioning services need to understand that this is a legal requirement, binding on everyone concerned with the management of patients with prolonged disorders of consciousness as an aspect of their duties towards them.

Chair of the PDOC Guideline Development Group, Professor Lynne Turner-Stokes said:

‘These guidelines set out the responsibilities for clinicians and NHS organisations who care for patients in PDOC. They provide practical advice on assessment, diagnosis and management, as well as how to go about best interests decision-making in routine clinical practice. They will help us to ensure that we have fulfilled our responsibilities to our patients, treating them in accordance with their wishes (so far as we can know them) when they are no longer able to tell us themselves.’

Alex Ruck Keene, Barrister from 39 Essex Chambers, said:

‘In NHS Trust v Y, the Supreme Court made clear that the majority of decisions concerning those in PDOC can be taken without the need to go to court. That important clarification carries with it the consequence that all those concerned with making these serious decisions understand and can apply the law - this clinically framed and legally accurate guidance is therefore essential reading to enable them to carry the heavy load that the Supreme Court has given them.’

Professor Jenny Kitzinger, co-director of the Coma and Disorders of Consciousness Research Centre, Cardiff University said:

‘Many patients in prolonged vegetative or minimally conscious states are lost in the system, sometimes for years, or even decades, without access to reassessment or any review of whether or not life-sustaining treatment continues to be in their best interests. These guidelines make it clear that patients should not be treated by default and that it is up to the professionals to ensure best interests reviews take place on a regular basis. Families should be asked about what the patient was like, what they might have wanted in their current situation, and should never have to be the ones to initiate discussion about continuing or stopping treatment.’