Facts for You

A blog about health, economics & politics

On 7 April 2022, at home in Southend-on-Sea, twelve-year-old Archie Battersbee was found by his mother, Hollie Dance, in distressing circumstances, unresponsive and with a dressing-gown cord tightened around his neck. She apparently believes that he had been engaging in an online “choking challenge”, during which participants “blackout” after asphyxiating themselves, temporarily depriving their brains of oxygen. When the ambulance arrived, he was in cardiac arrest. Resuscitated en route, he was taken to Southend Hospital and transferred the same night to the Royal London Hospital in the east of the city for specialist treatment.

Archie failed to regain consciousness over the ensuing weeks, leading hospital staff to diagnose brain stem death and to plan to discontinue all active life support measures. Their decision was backed by Mrs Justice Arbuthnot at the Family Division of the High Court of England and Wales in London. The judge concluded on 13 June “that Archie died at noon on 31 May 2022, which was shortly after the MRI scans taken that day”. Her ruling was immediately challenged by Archie’s mother, who said “His heart is still beating, he has gripped my hand, and as his mother I know he is still in there”. On 20 June 2022, Mrs Justice Arbuthnot allowed Archie’s parents to take their case to the Court of Appeal. According to Edward Devereux, QC, the barrister leading their legal team, the decision confirming Archie’s brain stem death requires a higher standard of proof, “beyond reasonable doubt” rather than “on the balance of probabilities”, and should respect his parents’ belief that “the time and manner of his death should be determined by God”.

Archie’s tragic case is yet another example of the problems surrounding the definition and recognition of brain stem death.  Traditionally, death was considered to happen when the heart stopped beating and the lungs could then no longer oxygenate the circulating blood. This definition of death was transformed by the development of cardiopulmonary resuscitation and the introduction of the ventilator, which kept people alive after independent heart and lung function had ceased, temporarily or otherwise. During the era of the ventilator, emphasis shifted from a cardiorespiratory definition of death towards a neurological definition, confirmed in the US by the Uniform Determination of Death Act 1981.

The concept of brain death was introduced by French neurologists Pierre Mollaret and Maurice Goulon in 1959. They described a state of ‘le coma depassé’ (beyond coma), in ventilator-dependent patients with severe and irreversible brain damage, whose hearts continued to beat while being artificially ventilated. Successive attempts to refine the diagnosis of brain death followed, notably in 1968 (Ad Hoc Committee of Harvard Medical School), 1976 (Conference of the Royal Medical Colleges in the UK), and 1981 (US President’s Commission for the Study of Ethical Problems in Medicine).  These advances were driven by the development of organ transplant surgery and the observation that outcomes of transplantation were better when organs were harvested from brain-dead donors with beating hearts rather than from “cadavers” in whom the heart had stopped. The original Harvard Brain Death criteria were based upon the recognition of “whole-brain death”, or complete loss of brain function (both brain and brain stem) and recommended an absence of electrical activity in the brain (a flat electroencephalogram tracing) to confirm the diagnosis. The 1976 UK guidelines emphasize testing for brain stem death, which also forms the basis of the 2010 American Academy of Neurology guideline on “Determining Brain Death in Adults”.

Current hospital practice in the UK is guided by the Code of Practice for the Diagnosis and Confirmation of Death, published by the Academy of Medical Royal Colleges in 2008. In this document, death is defined as “the irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe”. It is also noted that “there is no statutory definition of death” and that “there are no standardised criteria for confirmation of death following irreversible cessation of cardiorespiratory function”. Furthermore, the Code “does not (and could not) seek to provide guidance for every single clinical situation where a doctor is required to diagnose death”.

The all-important brain stem connects the brain with the spinal cord. It is responsible for conscious awareness, controls the sleep-wake cycle, and regulates the vital functions of breathing and blood circulation, maintaining heart rate and blood pressure. Brain stem death has to be considered when a person is comatose, unable to breathe without help, and is suffering from a condition known to cause irreversible brain damage, such as trauma, oxygen deprivation, or stroke. Coma is defined by an inability to open the eyes spontaneously, verbalise, or move in response to painful stimuli. The diagnosis of brain stem death is usually the responsibility of intensive care doctors, who look after patients on mechanical ventilators.   

Before brain stem death can be diagnosed, all potentially reversible causes of coma have to be excluded. The core body temperature must be within a normal range, there must be no evidence of intoxication with relevant drugs, such as sedatives, narcotics, and muscle relaxants, and acid-base balance and blood electrolyte levels must be within acceptable limits. Once these conditions are fulfilled, the absence of brain stem reflexes and the inability to breathe spontaneously upon disconnection from a ventilator, when a rising carbon dioxide level in arterial blood normally stimulates respiratory centres in the brain stem and initiates breathing (apnoea test). The diagnosis must be confirmed by at least two medical practitioners who have been registered with the General Medical Council for five years or more, acting together and on two separate occasions, at least six hours apart. One of the most familiar of the brain stem reflexes is the response of the pupils of the eyes, which normally constrict when light is shined upon them.

Most often, brain stem death is a “clinical diagnosis”, made at the patient’s bedside, and additional confirmatory tests are not considered necessary. In common with other clinical diagnoses, misdiagnosis is possible, for example when brain stem reflexes are not tested in accordance with current practice guidelines, or when an apnoea test has not been performed. Misdiagnoses of ‘recovery from brain stem death’ may reflect the diagnosis being incorrectly made in people with conditions that mimic brain death, such as Guillain-Barre syndrome and high cervical spine injury.

 Occasionally, ancillary tests may be required to confirm brain death, especially when brainstem reflexes cannot be tested, the apnoea test cannot be performed or is inconclusive, or when relatives and friends seek reassurance.  This may involve demonstrating either an absence of electrical activity in the brain (electroencephalogram, evoked potentials), a lack of blood flow in the major arteries supplying the brain (transcranial Doppler ultrasound, CT or MR cerebral angiography), or the failure of perfusion of brain tissue (radionuclide brain scans). One problem with ancillary tests, apart from their expense, is that both false-positive and false-negative results are possible.

It is easy to sympathise with the parents of Archie, a 12-year-old boy with a talent for gymnastics and mixed martial arts, who had his whole life ahead of him, only to be have sustained what is presumed to be severe and irreversible brain injury. It is particularly difficult for his loved ones to accept his doctors’ gloomy prognosis, just as his heart continues to beat and he may even be demonstrating some form of muscle activity. The presence of any signs of life, including a beating heart and the retention of some bodily function, conflicts with the definition of death under some moral and religious codes, explaining the Christian Legal Centre’s involvement in this case. A combination of moral, ethical and legal concerns, religious objections to equating biological death with a neurological diagnosis of death, a lack of international consensus with regard to the definition of brain death, and the possible coexistence of conditions that can confuse the diagnosis of brain stem death, all mean that cases such as that of Archie’s will unfortunately continue to arise and to be then fought out in the courts for years to come.

Ashis Banerjee

PS: Archie died at 12:15 PM BST on Saturday, 6 August 2022, on the day his life support was finally withdrawn