Over the past years, science has made great discoveries, opening up new opportunities for patients and making their lives a lot easier. However, there are still things that can’t be fully controlled or helped. Some people might ask themselves whether is fair that people have their lives made longer, when actually it might not be the best option, because they are going to suffer a lot, due to the medications and actually, they might even feel worst because of them. People ask themselves if this is a life worth leaving, or if is better for them to be ‘let go’, in order to end their suffering. Other people however really believe that a life is always worth saving, because in their believes it comes from God and only God can decide when is the right moment for a person to depart. Due to this division of opinions, at times is really hard to decide what’s best for the person, whether to just end the medications and all the support given, which will end the person’s life and his or her suffering, or if it’s better to keep fighting and hope that everything will improve with time. Such a case is the case of Alfie Evans. Parents and medical team can’t really decide what could be best for the child and have really different ideas about what to do for him. Usually parents and medical team will go through together with what to do for the patient, but in this case opinions are really divided.
Alfie Evans is a child born at the Liverpool Women’s Hospital. However, by the time he was 6 months old, there were concerns about his development and on the 14th of December he became a patient of the Liverpool’s Alder Hey Children’s Hospital. He was from Tom Evans and Kate James. The baby has been ill for more than 20 months and nobody really knows what’s effecting him. The hospital would like to “stop the medical ventilation” because they feel it will end his pain and is in his best interest. However, his parents disagree and would like to have him moved to the Ospedale Pediatrico del Bambin Gesù. For this reason, a legal battle has risen between the hospital and the parents, because they both have their own ideas on how the situation should be handled. The reason why their ideas are so split is because the infant hasn’t fully been diagnosed, but is believed that he suffers from some sort of neuro-degenerative disorder. However there is also the possibility that the child is suffering from a metabolic disorder, which could possibly lead to a more positive outcome. Because of latest examinations the hospital believes that little can be done for him, since he remains highly unresponsive. His MRI shows signs of damaged to the brain that is believed to be far gone any possible treatment available. Recently he is been kept in the pediatric intensive care unit. It is also believed that his condition is progressive and there is not much that can be done to help.
Because of the afore mentioned situation, Mr Justice Hayden was recently involved and stated that
“Dr M, a Consultant Paediatrician, specialising in intensive care medicine, records the following:
“The MRI brain scan done on 30.11.2016 showed evidence of
borderline delayed myelination for his chronological age and
unexplained diffusion restriction along sensory motor cortex, the
cortical-spinal tracts and fibres leading into the medial temporal
lobes. The appearances were not typical for any specific disorder.
Suggested possible diagnoses to be excluded included mitochondrial
disorders and non- ketotic hyperglycinaemia.” “
This means that the infant has very restrict to no-movement, is not really able to feel external stimulations and it appears to have no specific explanation as to why is this happening. The statement also talked about how due to this misterious illness, Alfie keeps suffering from epileptic seisures. Due to the situation, it is believed by the doctors that there is no chance for his brain cells to regenerate, making it harder for him to recover. Even in the event of recovery, it will be very unlikely that he will be able to fully recuperate normal cerebral activities.
“Professor Cross concluded that Alfie has a progressive, ultimately fatal
neurodegenerative condition, most likely a mitochondrial disorder. During her
cross-examination by F she told him in gentle terms that even if it were possible to
stop Alfie’s seizures, which did not look likely given his poor response to anticonvulsant
treatment to date, his brain is entirely beyond recovery. The brain she
said, again on F’s enquiry, simply has no capacity to regenerate itself unlike e.g. the
liver. She agreed that nobody knew quite why the brain does not have the ability to
do so but it is simply acknowledged by neurologists that it cannot.”
Because of this diagnosy, doctors are concerned about the possibilities that the child could lead a normal and care-free life. However, because the child’s brain hasn’t fully developed yet, there might be a chance that it might recuperate in part.
Because of all the uncertainties, Alfie’s parents made and appeal to the Court of Appeal. Since they don’t want to end the fight for his life, they wouldn’t want him taken off life support and they would like for him to be able to receive food and water. They would also like to be able to transfer him to Italy, so that the baby could receive different and possible better care. However, this has been promptly dismissed and the Court of Appeal refused to agree to move Alfie to Italy. It states that it wouldn’t be in his best interests. It is believed that he would not make it there and would die before.
“The plans to take him to Italy have to be evaluated against this analysis of his needs. There are obvious challenges. Away from the intensive care provided by Alder Hey PICU, Alfie is inevitably more vulnerable, not least to infection. The maintenance of his anticonvulsant regime, which is, in itself, of limited effect, risks being compromised in travel. The journey, self-evidently will be burdensome. Nobody would wish Alfie to die in transit.”
However, his parents believe that is in his best interest to try and give him the best possible care anyway, even if the chances of him making it look pretty slim. Only they, as parents would be able to take the best course of action for him and could decide what would be in his best interest. The Supreme Court however, ruled it out and stated that only if it was believed that the child was in danger, section 100 (3) and (4) of Children’s Act 1989 could be applied. However, because it was the hospital who was taking care of Alfie and deciding what could be best for him, it was possible to decide that it was not in his best interest. For this reason, the Supreme Court decided that it would be better to leave it up to the doctors to decide what to do next. The Supreme Court trusted that the doctors are professionals enough to make sure that Alfie would not suffer.
“Supporting all this is the diligent professionalism of some truly remarkable doctors and the warm and compassionate energy of the nurses whose concern and compassion is almost tangible. All this creates an environment which inherently conveys dignity to Alfie himself. In my judgement his life has true dignity. The far more challenging question is whether and if so how that can be maintained.”
However, Alfie’s parents did not stop their search for justice and just recently went to the European Court of Human Rights, where they stated that the UK was not keeping in line with Article 8 of the European Convention. This article states that:
“1. Everyone has the right to respect for his private and family life, his home and his correspondence. 2. There shall be no interference by a public authority with the exercise of this right except such as is in accordance with the law and is necessary in a democratic society in the interests of national security, public safety or the economic well-being of the country, for the prevention of disorder or crime, for the protection of health or morals, or for the protection of the rights and freedoms of others.”
Because of the inability to make decisions for they son, the Evans feel denied of their role as parents and feel violated by the court. However, the Court declared that this was not the case and the case got turned again to the Domestic Court. Several protests in front of the hospital are being held, and his parents would like to remove their baby from the hospital. Reason being for this is because the Domestic Court would like to stop any treatment, while his parents would like to continue the research of a solution. Even the Pope got involved and showed his support to Alfie’s parents on this matter. He sent a message over twitter expressing that:
‘”everything necessary may be done in order to continue compassionately accompanying little Alfie Evans’”
In the meantime, Alfie’s parents are trying again to have their son removed from his current hospital and move him to Rome. The Court of Appeal however is ruling again against them. The Court of Appeal stated that
“There is also no reason for further delay. There will be no further stay of the Court of Appeal’s order. The hospital must be free to do what has been determined in Alfie’s best interests. That is the law in this country. No application of the European Court of Human Rights Strasbourg can or should change that.”
Alfie’s parents will continue to fight for what they believe and will soon appeal to the ECtHR again, citing Article 5 of the Convention. The Article states that:
“Everyone has the right to liberty and security of person. No one shall be deprived of his liberty save in the following cases and in accordance with a procedure prescribed by law.”
Alfie’s parents want to try and make sure that their boy is being looked after and kept safe and sound, as well as making sure that they will kept in control over what decisions could lead to a more positive outcome.
It is very hard for parents not to feel listened and validated in their role. Especially when they are dealing with such a heartwrenching situation. However some may ask how is it fair that someone is being kept alive, while potentially suffering a great deal. Others might instead say that life is the most precious gift of all and should be preserved. In a situation such as this is very hard to fully understand what the best choice might be. According to some, is no use to push for something that might seem as futile. Others however will still hold on to the hope that if everything that’s possible gets done, the situation might turn for the better.
By Fiammetta Broggi