Today many adults and children are helped by new medical treatments for serious conditions and accidental injuries but many are too ill or injured to be helped. Families in shock or distress about a loved person may then put their trust in experimental treatments, even where there may be no evidence as yet that these work. While initially treated with mechanical ventilation as doctors assess conditions or injuries, there comes a point when a discussion about withdrawing treatment is needed.
A complicating factor is when other countries offer to treat the patient without seeing the medical records and test results.
We don't hear about the many cases where the patient and/or family and doctors agree on this point but where there there is disagreement, recently families have made the issue public to put pressure on doctors to continue treatment, even when the patient will not recover.
The parents of Charlie Gard have since set up the Charlie Gard Foundation to work a bill for Parliament on 'Charlie's Law'. They see an urgent need for changes in the law, policy and legal and health practices to support both families and medical and legal professionals involved in emotive, difficult and life-changing circumstances. They have been working with NHS medical professionals, world-leading ethicists and legal experts to develop draft legislation with the aim of preventing further long and painful conflicts between hospitals and families with sick children.
Three key changes proposed.
- Prevent cases reaching court. Both families and medical professionals would prefer this. The new legislation would provide access to clinical ethics committees throughout NHS hospitals, access to medical mediation where there are differences of opinion, and speedy access to all medical records including raw data.
- Help parents get the support they need for better access to advice on ethics and their rights, independent second opinions, and legal aid so families do not have to face having to pay for costly legal representation, and are not forced to rely on funding from outside interest groups.
- Protect parental rights by restricting court involvement to cases where there is a risk of significant harm to the child.
Terminal genetic conditions. Some children are born with life-limiting genetic conditions. While doctors are able to use mechanical ventilation to help breathing and tube-fed nutrients, no treatments for these these conditions are currently available. Doctors will aim to keep the child comfortable initially but at some point physical deterioration means that they will suggest removing medical help in the best interests of the child.
This was the case with Charlie Gard (4 Aug, 2016 to 28 Jul. 2017) who was born with mitochondrial DNA depletion syndrome (MDDS), a rare genetic condition that causes progressive brain damage and muscle failure, for which there is no treatment and usually causes death in infancy. While being cared for at Great Ormond Street Hospital, doctors contacted New York neurologist Dr Hirano, who was working on an experimental nucleoside treatment and thought there was a "theoretical possibility" that it would help. Dr Hirano and a member of the GOSH medical team discussed the case and agreed that the experimental treatment was unlikely to help if there was irreversible brain damage and that a baseline MRI scan was needed to rule out "severe brain involvement". to rule out . The GOSH team intended to try the treatment and started work on an application to the hospital ethics committee and invited Hirano to visit and examine Charlie (the visit did not happen till July 2017).
When in January 2017 Charlie had seizures that caused brain damage, doctors were of the view that further treatment was futile and might prolong suffering and began discussions with his parents about ending life support and giving palliative care. However, his parents still wanted to take him to the US for experimental treatment and raised funds for the transfer. In February 2017 the hospital asked the High Court to override the parents' decision. The parents appealed but British Courts and the European Court of Human Rights supported the hospital position. In July 2017 Dr Hirano visited Charlie but after examining scans of Charlie's muscles, determined that it was too late for his treatment to help. On 27th July, by consent, Charlie was transferred to a hospice, mechanical ventilation was withdrawn and he died on 28 July 2017.
Brain death. This is permanent, meaning that the affected person will never regain consciousness or start breathing on their own. They are legally confirmed as dead with the time of death on their death certificate logged when they fail a set of tests. This can be confusing to many people because brain dead people can still have a beating heart and their chest will rise and fall with every breath, which is due solely to life support machines - not because they have miraculously regained the ability to do this themselves. Occasionally also the limbs and torso can move, due to reflexes triggered by nerves in the spine that are not linked to the brain - this does not indicate that the brain is working. [By contrast, the the brain stem still functions in someone in a vegetative state.
When the brain stem stops working, it cannot send messages to the body to control any functions and cannot receive messages back from the body. This damage is irreversible. Six tests are used to determine brain death, including pupils not responding to light, having no cough or gag reflex and being unresponsive to pain. MRI scans can also show areas of damage and necrosis.
On 7th April 2022 12-year old Archie Battersby was found unconscious by his mother with a cord round his neck at their home in Essex. (His mother thought he might have been trying a challenge seen on TikTok.) Taken to Southend Hospital, he had suffered severe brain injuries and needed life-sustaining support, including mechanical ventilation and drug treatment. He never regained consciousness. On 8th April he was transferred to the Royal London Hospital in Whitechapel. With no sign of improvement, the hospital was granted High Court permission on 13th May for Archie to undergo brain stem testing. On 16th May two specialists tried to administer brain stem function tests, but were unable to as Archie did not respond to a peripheral nerve stimulation test, a precursor to the brain stem test. Continued life support would only delay cessation of breathing and other body organs would also deteriorate. With the parents still opposing removal of mechanical ventilation, believing that the spinal nerve triggered movement showed consciousness, further court cases gave doctors permission to use MRI scans, which took place on 31st May. Despite medical evidence from the scans, the parents still refused permission to end life support. During June 2017 further court cases in the UK, including the Supreme Court, gave permission to the hospital. On 3rd August the European Court of Human Rights deemed it a matter for UK courts. The family wanted him to be moved to a hospice for this but the High Court, taking medical evidence into account, ruled he was too unstable to be transported by ambulance. Archie's life support was withdrawn early on 6th August and he died at 12.15 BST with members of his family by his bedside.
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