Alfie, the boy trapped between life and death

Fighting spirit: The judge who ruled in Alfie’s case called him “an extraordinary boy”.

What should be done about Alfie Evans? The two-year-old is comatose and terminally ill. His hospital has decided that he should not be kept alive, but his parents refuse to give up hope.

Alfie Evans has been alive for almost 24 months. Of those, he has spent 16 in Alder Hey Children’s Hospital. Alfie cannot swallow, smile or see. He is in a semi-vegetative state, and his doctors say that any movement he makes is an involuntary seizure.

The doctors believe that Alfie has lived long enough. They are unable to diagnose him, but they are confident that he has a degenerative neurological condition and no hope of recovery. His quality of life is so poor, they argue, that keeping him alive is “inhumane”. After a tortuous legal battle, the hospital won the right to turn off his life support, which it did on Monday.

Alfie’s parents disagree. Pointing out that he has continued — against all odds — to breathe on his own since Monday, Tom and Kate say that their son deserves more treatment. After Tom met the Pope and pleaded for help, an Italian hospital linked to the Vatican offered to operate on Alfie and prolong his life. But Alder Hey, backed by the courts, will not let him go.

In general, parents make decisions for their children, and the law protects their right to do so. If a public body believes that parents are not acting in a child’s interest, however, it can ask a court to let it override the parents’ choices.

For instance, a local authority may request permission to remove a child from an abusive home. In other cases, hospitals can try to intervene when parents refuse treatment for a sick child. This sometimes happens among Jehovah’s Witnesses, who reject blood transfusions on religious grounds.

Alfie’s case is tricky, not least because his condition is so rare. In siding with the hospital, the judges have accepted the doctors’ view that to prolong his life is to harm him.

Tom has called this verdict “the death penalty”. He and Kate have crowds of supporters, many of them Christian, who call themselves Alfie’s Army. But they seem to be out of legal options. Meanwhile, their son clings to life.

Who is right?

Alfie: a life

Tom and Kate, say some. They know Alfie best. It would be one thing if they were clearly hurting him, but this case is a grey area — there isn’t even a diagnosis — and they should get the benefit of the doubt. Just because Alfie will never be a fully healthy person does not mean that he deserves death. Love and optimism must win out.

The doctors, reply others. Loving your son is not the same as knowing what is best for him. Tom and Kate are not medical experts, and in any case their judgment is clouded by emotion. The doctors know enough to be certain that Alfie is a hopeless case. If they let him fly to Italy, they would be giving false hope to parents of terminally ill children everywhere.

You Decide

  1. Is letting someone die the same as killing them?
  2. Are outsiders, like the Pope and Alfie’s Army, helping by weighing in on this debate?

Activities

  1. Imagine you could pen a letter to Alfie that he would understand. What would you tell him? Write no more than two paragraphs.
  2. Write 1,000 words debating the statement: “Death gives life meaning.”

Some People Say...

“Choose life, so that you and your children may live.”

Deuteronomy 30:19

What do you think?

Q & A

What do we know?
According to his mother, Alfie did not develop normally in his first few months. He was having trouble swallowing, sitting and communicating. GPs initially reassured the parents, but in December 2016 Alfie fell seriously ill. “He was floppy and lifeless,” said Kate. “His limbs started jerking and his eyes started rolling back.” He was rushed to Alder Hey and put on ventilation.
What do we not know?
What is afflicting Alfie. It is “neurological” — it affects his nervous system (which includes nerves, the brain and the spinal cord) — and “degenerative”, which means that the functioning of his nervous system is gradually declining. Basically, most of his brain has been destroyed, and cannot be recovered. One judge has reportedly suggested that the condition could one day be named after Alfie.

Word Watch

Alder Hey Children’s Hospital
In Liverpool.
Tortuous legal battle
Alfie’s parents have appealed to the Supreme Court and the European Court of Human Rights. They have been rejected each time.
The Pope
In response, the Pope said that sick people should “be respected in their dignity and cared for … with great respect for life”. He also intervened in the case of Charlie Gard, a British baby at the centre of a similar debate last year. Charlie died after being taken off life support.
Prolong his life
The hospital says that its treatment will help Alfie breathe and keep him alive for an “undefined period”. British judges point out that it is not promising to improve his condition.
Override
Courts rule in favour of the parents more often in the US than in the UK.
Blood transfusions
Jehovah’s Witnesses say that the Bible commands them to abstain from receiving blood. They argue that blood represents life, and only God has the right to give life.
Alfie’s Army
Members of the group have protested outside Alder Hey, and even tried to storm the hospital’s entrance (police held them back).