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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?
Check out this forthcoming talk at Oxford on NBT / PIT / medical futility.
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 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 unwanted further treatments if they are no longer clinically inappropriate to offer or are not in the patient’s best interests? From a legal perspective 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.
Importantly, if a treatment is not clinically appropriate to offer this is a clinical decision and not a best interests one. Disputes about these two types of decision are dealt with differently by the English law – through different judicial pathways in different courts. However, clinicians for the most part do not understand the difference and frequently muddle the language. But they are not alone – lawyers (and even some judges) have been known to do so as well!
Since 2018, decisions to discontinue clinically-assisted nutrition and hydration no longer require declaratory relief from the court provided all parties are in agreement 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. Moreover, as best interests discussions have become part of routine practice, they have often highlighted areas of disagreement and the Court has been critical of organisations who delay in bringing the matters to Court. As a result more cases are coming to the court and earlier in the acute phase of care. But the legal processes involved are often time-consuming and expensive. The NHS has not have allocated resources for them and applications started in good faith can be 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.
In this lecture, Prof. Turner-Stokes will explore some of the clinical nuances of this decision-making process, discuss some of the legal conundrums that have arisen from recent experience, and address whether the current system is fit for practice – and if not how we might be able to work together to improve it.
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.
