Response to ‘A Matter of Life and Death: Controversy at the Interface Between Clinical and Legal Decision-Making in Prolonged Disorders of Consciousness’

Guest Post: Julian Sheather, British Medical Association

Response to: A matter of life and death: controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness (also available as a blog summary)

The law has to work in generalities. The prohibitions it imposes and the liberties it describes are set for all of us, or for large classes of us. But we live – like we sicken and die – as individuals. Lynne Turner-Stokes gives a vivid account of an area of clinical practice where these truisms come into conflict. Practice Direction 9E (PD9E) doesn’t sound like much, a piece of dry-as-dust procedure for the Court of Protection, but it governs an area of keen moral concern: for our purposes, decisions relating to the withdrawing or withholding of clinically-assisted nutrition and hydration (CANH) from patients in a persistent vegetative state (PVS) or a minimally conscious state (MCS). According to PD9E, all such decisions should be bought before the Court of Protection.

On the face of it, given the seriousness of the decisions involved, court involvement looks like an important safeguard – these are, inevitably, life or death decisions on behalf of people who cannot determine their own interests. That its origins lie with Anthony Bland and one of the most important judgments in recent medico-legal history seems to confirm it. But there are some crucial distinctions. Anthony Bland was young. His brain damage was sudden onset – the result of asphyxiation. Unless CANH were withdrawn, he could live for many years. The lawfulness of withdrawing CANH in these circumstances was legally untested. The question before the courts was whether withdrawal could be distinguished from unlawful killing.

But disorders of consciousness are not solely the result of trauma in the otherwise healthy. As Lynne Turner-Stokes points out, many people can move into and through them as part of the ordinary process of dying. And the withdrawing – or withholding – of artificial nutrition and hydration can be a part of appropriate clinical management. And this is where PD9E can come under stress. As Turner-Stokes points out, states of disordered consciousness arise in clinical practice in many contexts, often unlinked to sudden-onset brain injury. If PD9E arose from the specifics of Bland, how do we distinguish between those cases that should go to court, and those that form part of ordinary clinical care?

Also, consider some of the practical issues that Turner-Stokes raises. Many people in PVS or MCS will die before a court hearing can be arranged. If CANH has already been initiated – and, in cases of sudden-onset acquired brain injury, it will almost always be initiated – this can result in the continuation of treatment that all parties involve consider to be no longer in the patient’s best interests. How does this help those patients the Directive was designed to protect?

And consider the process of seeking declaratory relief from the courts – each case takes up to nine months and costs the NHS as much as £122,000. If every case were taken to the Court of Protection it would be overwhelmed. And the costs to the NHS would be stratospheric. And this without clear benefit to the patients involved.

Although PD9E has its roots in Bland, the House of Lords nonetheless stated that the requirement to seek court approval should be an interim measure until a sufficient body of professional experience had developed. Fair to say that this expertise now exists, as Turner-Stokes’ article clearly demonstrates. In the BMA’s view, there is no reason ‘to differentiate between decisions for patients in PVS and those for patients with other very serious conditions where (C)ANH is not considered to be a benefit, which are currently governed by best practice without the need for legal review.’

Surely this is right. For many of us at the end of our lives, decisions will need to be made about the withdrawal of treatment, including CANH, which may otherwise lengthen our life. It feels uncontroversial to say that the prolongation of our lives – or of our dying – will not always, on every occasion, be in our best interests. There will also be times, as Turner-Stokes demonstrates, when our bodies will no longer tolerate such interventions and the time to remove them has come.

The Royal College of Physicians’ guidance on prolonged disorders of consciousness, of which Turner-Stokes was the lead author, supports the need for Court application for withdrawal of CANH. But it restricts the requirement to PVS or MCS subsequent to sudden onset acquired brain disorder – to situations much like Anthony Bland’s.

There is clearly a role for the Court – where, for example, there is disagreement or dispute about the proper course of action. Given that those with sudden onset brain disorder may otherwise live for considerable time, perhaps court oversight may still provide some assurance. But we urgently need to find a way to distinguish those cases appropriately managed by ordinary clinical care. Let us hope that Lynne Turner-Stokes’ timely and immensely thoughtful paper leads to a necessary re-think. Somehow the law’s need for generality has to be squared with the wide clinical variety of every individual death.

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