Contested decision-making about life-sustaining treatment for adults after catastrophic brain injury
Is current law and practice fit for purpose and how can we work together to make it better?
Thursday 19 March 2026 17:45 to 19:30Speakers: |
Professor Lynne Turner-Stokes |
Location: |
EP Abraham Lecture Theatre and Online |
About the speaker
Professor Lynne Turner-Stokes DM FRCP MBE is a consultant in rehabilitation medicine and Director of the Regional Hyper-acute Rehabilitation Unit (RHRU), Northwick Park. The RHRU provides in-patient and community outreach services for younger adults with severe complex neurological disabilities. She has a special interest in the management of patients with prolonged disorders of consciousness (PDOC) from diagnosis to end of life care. In her academic role as Northwick Park Professor of Rehabilitation Medicine, King’s College London, Prof. Turner-Stokes chairs the Guidelines development group for the Royal College of Physician’s national clinical Guidelines for patients in PDOC, and was the lead editor for the final production of the guideline documentation. She has been extensively involved with the legal aspects of clinical and best interests decision-making working with clinicians and legal teams, as well as acting as an expert witness in court proceedings.
Abstract
NB This abstract has been amended in the light of the recent Court of Appeal judgement Townsend vs Epsom and St Helier NHS Trust [2026] EWCA Civ 195
As we get ever better saving lives through improved emergency services, we rescue more people who would otherwise have died at the scene of their injury. Some of those will have catastrophic brain injury and remain in prolonged disorders of consciousness.
An increasingly frequent challenge for clinicians is what happens when it becomes clear that either:
- the patient has an unsurvivable brain injury and simply cannot be saved,
- or that they will not regain a quality of life that they would value?
How do we manage expectations and difficult decisions, and how do we humanely and legally discontinue treatments if they are no longer clinically inappropriate to offer or are not in the patient’s best interests?
From a legal perspective it has been common ground that there are two distinct pathways for decision-making:
- Clinical: It is first up to clinicians to decide which treatments are clinically appropriate to offer (usually on the basis that it is likely to be effective and do more good than harm).
- Best interests: Then, if a treatment is on offer, for patients who lack capacity to decide for themselves, the Mental Capacity Act 2005 requires us to determine whether giving it would be in their best interests and in line with their likely wishes, so far as these can be ascertained.
Case law in the last decade or so has established that:
- It is the giving, not the withdrawing of treatment that has to be justified, and
- the key prognostic question is not whether the patient will regain consciousness, but whether they will regain a quality of life that they themselves would value.
Since 2018, decisions to discontinue clinically-assisted nutrition and hydration no longer require declaratory relief from the court when there is no disagreement about the patient’s best interests and the relevant guidance has been followed, but this decision-making is a complex and iterative process which is often poorly understood.
As best interests discussions have become part of routine practice, they have often highlighted areas of disagreement and the Court of Protection (CoP) has been critical of delay in bringing the matters to Court. As a result, more cases have been coming to the court and earlier in the acute phase of care. But the legal processes involved are time-consuming and expensive. The NHS has no allocated resources for them and applications started in good faith have sometimes been overtaken by more rapidly-moving clinical events, rendering them ultimately redundant and resulting in a waste of scarce clinical time and resources along the way.
The Court of Appeal (CoA) Judgment in Townsend vs Epsom and St Helier NHS Trust [2026] EWCA Civ 195 handed down on 3 March 2026 potentially adds a further order of magnitude to the problem. If implemented, it could even spell the end of the NHS as we know it!
Until this judgment, it was generally understood that there was settled law to the effect that a decision about appropriate treatment to offer is a ‘clinical decision’ and not a ‘best interests’ one. ‘Clinical’ and ‘best interests’ decisions have been dealt with differently by English law—through different judicial pathways in different courts. Disputes about best interests have been dealt with by the CoP and it was the responsibility of the treating organisation and/or service commissioner to make an application. However, the CoP can only make decisions that the patient themselves could make, and so determine on their behalf which of the available treatments is in their best interests. It cannot order clinicians or a hospital to give a treatment that is not on offer. If the family wanted to challenge a clinical decision not to offer a treatment, they could apply to the High Court, but it was up to them to make the application.
However, in his CoA Judgement Lord Justice Baker held that:
“(69) Any decision about the care and treatment of a mentally incapacitated adult, including the withdrawal of life-sustaining treatment, must be taken in the patient’s best interests. There is no carve out for ‘clinical decisions’.
“(68(3) If there is disagreement between any of the parties about the continuation of life-sustaining treatment that cannot be resolved by discussion and/or mediation, then the matter should be referred to the Court of Protection”.
Between them, clinicians up and down the country make many thousands of clinical decisions every day not to offer treatments that are clinically inappropriate, many of them urgent and for patients who lack capacity. Families may have unduly high expectations for the outcome of such treatments and contest the decision. If implemented in clinical practice, this judgement would very quickly swamp the CoP, and the NHS would potentially grind to a halt as clinicians spent their time preparing court applications rather than treating patients. Moreover, the CoP still does not have the power to order a treatment to be given, it could only say whether the treatment would be in the patient’s best interests if it were to be offered. So the exercise would have little point, but would place an even greater burden on an already-struggling NHS (and also on the justice system).
In this lecture, I will explore some of the clinical nuances of this decision-making process for patients in prolonged disorders of consciousness. I will examine further the potential impact of this judgment, and consider potential ways in which clinicians and lawyers could work together to find a way forward that is sustainable, both for the courts and the NHS. But, above all, that is right for the individual patients we strive to serve.
About the lecture
All welcome, but registration is recommended. Register here to book a seat at the lecture or to receive the online link if joining virtually.
The lecture will be followed by a short drinks reception in the Stables Bar.
This lecture is convened by Professor Jenny Kitzinger (University of Cardiff) as part of a project supported by the Sheila Kitzinger Programme.
