Covid-19: Royal College issues further guidance on the management of patients with prolonged disorders of consciousness

The Royal College of Physicians has published further guidance on the management and care of tracheostomised patients with prolonged disorders of consciousness (PDOC) during the COVID-19 crisis, as a supplement to its national clinical guidelines for PDOC published in March 2020.

To recap, the March guidance was an updated version of 2013 guidelines and was endorsed by 15 health bodies.  It followed the Supreme Court decision in An NHS Trust v Y.  Its target audience was clinicians, commissioners and providers (which includes care homes) of services for people with PDOC following profound brain injury.  It covers patients in a vegetative state and minimally conscious state but not short-term coma. 

At nearly 200 pages long it was divided into chapters covering:

  • Defining criteria and terminology
  • Assessment, diagnosis and monitoring
  • Care pathway from acute to longer term management
  • Ethical and legal framework for decision-making
  • Practical decision-making and practical management
  • Service organisation and commissioning

The supplemental guidance is designed primarily for the target group of the main guidance, which includes adult patients (aged 16 and over) in PDOC lasting for more than four weeks following sudden onset acquired brain injury (ABI) of any cause.  However, many of the principles may have wider application for other patients with profound brain injury who require tracheostomisation and who lack the capacity to make decisions regarding their own care and treatment.

The supplemental guidance sets out the key principles of the decision-making process for patients who lack capacity to make decisions for themselves:

  1. It is the giving (rather than the withdrawal or not giving) of treatment that needs to be justified.
  2. It is first up to the clinical team to decide which treatments may be clinically appropriate and thus on offer. (If a treatment is not on offer, the team is under no obligation to provide it and there is no need to hold a best interests discussion, although the decision and the reasons for it should be explained to the patient’s family).
  3. For those treatments that are on offer, a best interests discussion should follow to determine whether the patient would wish to receive that treatment.

In many respects the principles in the supplement are, of course, consistent with those set out in the main guidance, but overlaying this is guidance derived from the present, unprecedented situation, in anticipation of the worst-case scenario that, with a depleted staff and lack of PPE, clinicians may not be able to provide all of the interventions that they would be able to in ‘normal’ times.

In a section headed Difficult decisions, the supplemental guidance references the RCP’s own ethical guidance and follows in its very broad terms that issued with greater detail by the BMA in foreshadowing what decisions might need to be taken if resources were to fall short of demand:

"Where resources fall short of those required to manage patients safely (especially those with proven or suspected COVID-19), difficult decisions may be required to balance the benefits and risks of interventions, taking into account both the patient’s prognosis and the risk of infecting staff and the associated consequences for both them and other patients.

This may involve taking a decision not to offer further active treatment/intervention that may potentially mean that the patient does not survive.  These are among the most challenging decisions that any doctor or clinician could be faced with.  It is critically important that such decisions should not be left to nurses or junior staff on the ground, but should be made promptly by the senior clinician in charge of the patient’s care, with the involvement of at least one other consultant physician – ideally one with experience of PDOC and prognostication of severe ABI.

Before taking such a significant decision, however, the senior clinician should first ensure that they have done everything they reasonably can to resolve the problem.  In particular: 

  • the various possible options to avoid or minimise risk to an acceptable level – the identified risks should have been considered;
  • they should have escalated it within their trust/organisation so that the senior management team is fully aware of the issue and has had the opportunity to address it. Trusts and service managers have a responsibility to ensure the safety of their staff as a critical NHS resource for the care of all patients, and to support the senior clinicians in these difficult decisions when the need arises.

Finally, the senior clinician should document carefully the rationale for their decision including:

  • the prevailing circumstances at the time;
  • any steps taken to mitigate the identified risk;
  • who else they consulted or discussed the issue with;
  • the actions put in place to manage any consequences."

There is now a plethora of guidance from individual bodies seeking to support clinicians on the front line, some publications more detailed than others.  At the time of writing, we understand the threatened judicial review challenge, to the Government’s failure to publish national guidance on the allocation of scarce clinical resources in the event that demand outstrips supply, remains on foot.  We will keep readers posted on that.

In the meantime, if you have any queries about the lawfulness of critical care decisions (either as a commissioner or a provider), please do not hesitate to contact a member of the team.

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