I brought up this story in class and everyone was eager to hear the details of the situation. I did some digging for everyone and the whole situation is not easier to hear the second time round. This story is difficult to listen to, mainly because it isn’t over yet. Many families feel that the UK’s system of health care is lacking in a lot of departments and their choices are heavily scrutinized by the public and the government that funds them. This is complicated, messy, and unfortunately there is no fix for the families already affected. We can, however, look at the situation and hopefully build a structure to assist all parties involved.
So, because we do not live in the same country as the situation, I did some research for everyone. After a crash course through a summary of years of history, politics, and legalese, I think I have the gist. The National Health Service(NHS) is a government funded system that provides most of the services the public needs for free. According to the British Medical Association, “NHS services cover everything from antenatal screening and routine treatments for long-term conditions, to transplants, emergency treatment and end-of-life care.” Other services are supplemented by a small fraction of a private system that can be paid out of pocket or by a companies insurance plan an individual gets from work, this seems to be for unusual treatment and does not need to be used on a daily basis. As cut and dry as this may look, there is a lot of issues with the system over all. Between a deficiency in medical professionals, a misuse of the services by the public, or simply not enough funding for the equipment required to run a hospital, changes might need to be on the way. As a public system, they are responsible for everyone’s health in the UK, meaning standards should be fair and equal for everyone in theory. With the background out of the way, let's talk a bit about the family in question, the Evans.
Alfie Evans was a toddler born in the UK in May of 2016, and was admitted to a hospital due to seizures in December of the same year. By 2018, the doctors were talking to the parents about the next steps as Alfie was almost constantly in a vegetative state and only responded to touch. It was in the hospital’s opinion that it was cruel to keep the boy on life support. Alfie’s parents, and eventually a large amount of people, including the Pope, disagreed and took the case to court. In cases in the UK where parents and medical professionals differ in opinion, the government can intervene on behalf of the child’s safety, called the 1989 Children’s Act, with the implication that the courts will act in the best interest of the child. In spite of the favor of the public and the coverage that the family had garnered, the courts agreed that life support would be inhumane to continue and even with appeals all the way to the Supreme Court that Alfie was unable to go home or to a hospital in Italy where his parents had doctors waiting to assist them with their son. Alfie died in the hospital on April 28th 2018, of a chest infection and a degenerative neurological condition, possibly Mitochondrial DNA depletion syndrome (MDS).
I remember reading about this at the time and being conflicted. The spirit of the courts was to create the least amount of pain for this child but the parents were insistent as well. The parents thought that giving their son another shot at life was the right thing to do, no one wants to give up on their children. In researching, I tried to find articles that showed both sides, domestic and abroad. I found it interesting that the domestic discussions were fairly nonpartisan, showing both sides as equal, including the Sun, a notorious tabloid in the UK. Vox and CNN both talked more about the accusations of neglect or abuse on the part of the hospital. Potentially, the reactions of the hospital were logical but care and empathy need to be expected for the parents too. One thing was consistent with all of the articles, support was in favor of Alfie’s survival over all.
Personally, I am in a hard place. If the doctors were correct, Alfie was lacking a majority of the grey matter he needed to grow and survive past his first few years of life. At the same time, I cannot imagine any parent easily making the choice to end their only child’s life, or prolonging pain. The nature of degenerative neurological diseases is cruel, either it prevents life from starting, or it slowly takes the freedom from a person. It is for this reason I support the eventuality of genetic therapy, not because people should live longer, but because people should get to live in the first place. I also support legislation like Charlie’s Law, one promoted by the parents of another child that had a similar situation with the healthcare system and courts.
I look forward to everyone’s thoughts and below are the links to the articles I used.
The UK Healthcare System
An Introduction to the NHS
How the NHS works
The history of the NHS in charts
British toddler Alfie Evans not allowed to leave country, UK court says
The controversy surrounding the death of British toddler Alfie Evans, explained
Who was Alfie Evans and what was the row over his treatment?
Tot’s Battle: Who are Alfie Evans parents Kate James and Tom Evans, when did they have another baby and when did Alfie die?
This was supposed to be my comment for last class: Super excited to discuss this in class, because personally I don't feel torn in my opinion that the parents SHOULD have gotten the last say on the decision of the well being of their child. However, I do understand that parents often lack a much needed medical understanding but in this case the doctors hadn't even concretely diagnosed the child. Sad case.
ReplyDeleteThe issue was if the doctors were acting on behalf of the child or enacting their own wishes on a family who were going to pay for treatment. The truth being we will never know if therapy or recovery would have been possible. Both sets of parents in question were begging the courts for their children to go home or travel. Risk and reward happens everywhere, had Alfie been allowed to go home, away from the infection, would he have lived? Would the Italian doctors have been able to allowed him to live? We cannot change what has happened, but we can look at the case and consider what is the right thing to do in the future.
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