Evaluating prolonged disorders of consciousness (PDOC)

The Royal College of Physicians (RCP) is being urged by experts to review their guidance on the use of functional imaging (fMRI & PET) and electrophysiology in the clinical evaluation of people with prolonged disorders of consciousness (PDOC).

It is believed that there are around 25,000 UK patients with PDOC and, in a harrowing article in the Times[1], it is stated that “thousands of people thought to be in a vegetative state are awake and locked in unresponsive bodies...”.

The article refers to a paper by N Scolding et al[2] in which a neurologist, an imaging neuroscientist and lawyer-ethicist argue that the RCP should look to the American Academy of Neurology guidance from 2018 and review the explicit exclusion of “investigations to detect covert consciousness”, especially where “around one in five patients diagnosed with [PDOC] are in fact conscious enough to follow commands in a neuroimaging context, and given the clinical, ethical and legal importance of determining whether patients with [PDOC] are legally competent or at least able to express their views and feelings …”.

The article raises a number of ethical and legal issues that may well arise in claims involving claimants with PDOC:

1. If the claimant is covertly conscious and autonomous, treating clinicians should obtain informed consent. Even where the claimant is not autonomous, they may be able to convey their wishes to the treating team and family, thereby guiding decision making.
2. A failure to test could cause life-maintaining treatment to be withdrawn or condemn a claimant to “a life of mental solitude” where treatment and rehabilitation may be possible.
3. Even if negative, testing can be reassuring to family members, inform clinicians and assist both clinicians and family members when considering appropriate treatments, investigations and actions.
4. There is an assumption of capacity under s1(2) Mental Capacity Act 2005 and all practicable steps should be taken to help a person to make decisions (s1(3) MCA 2005). Where fMRI scanning can show a claimant retains awareness and can communicate, then this may well be such a step.  The article goes further and alleges that a failure to test “presumes lack of capacity” and “removes any possibility that some level of residual capacity might be found”.
5. If a claimant is conscious, but does not have capacity, s4 MCA 2005 requires a person making decisions on their behalf to act in their best interests. Section 4(4) requires the decision maker to “so far as reasonably practicable, permit and encourage the person to participate, or to improve his ability to participate as fully as possible in any act done for him and any decision affecting him.” Furthermore, when the decision relates to life-sustaining treatment, the decision maker “must consider, so far as is reasonably ascertainable the person’s past and present wishes and feelings …” (s4(6)(a) MCA 2005). It is argued neuroimaging may assist with this.
6. There may be a breach of Art 2 ECHR if life-maintaining treatment is withdrawn from a claimant who would have wanted to continue treatment if they had been found to be conscious when scanned.

Practice points for insurers:

1. Insurers may be asked to fund fMRI / PET scanning &/or electrophysiology as part of the rehabilitation package or at the request of medico legal experts. Consideration should be given to the challenges the RCP identified with such testing when deciding that they should not form part of the standard assessment[3].
2. Even if no such request is made, there is likely to be an increased reliance by claimants on neuroradiological evidence to try and establish consciousness and determine whether the claimant has capacity.
3. Where consciousness, with or without capacity, is established, decision making will be complex and time consuming.
4. As identified by both the RCP and Scolding et al, the way in which information is provided will have to be carefully considered to avoid providing false hope to families.
5. Claimants who may previously have had life-maintaining treatment removed at an early stage will have longer term care / rehabilitation needs.
6. Determination of the award for PSLA will be complicated.
7. Determination of capacity will be a complex and challenging assessment for the team of experts instructed.

For more information please contact Natalie Dawes or Jonathan Booth.

[1] Thousands in vegetative state ‘are conscious’ | News | The Times

[2] Prolonged disorders of consciousness: a critical evaluation of the new UK guidelines.  Brain 2021 Jul 28; 144(6):1655-1660.  doi: 10.1093/brain/awab063.

[3] Section 2.4; pg 55; Prolonged disorders of consciousness following sudden onset brain injury: national clinical guidelines | RCP London;