Suffering in the land between black and white

By the time you read this, Charlie Gard, a baby born almost one year ago, may already be dead. Charlie was born with an extremely rare condition that causes progressive muscle weakness, including of the heart, and brain damage.

He has been on life-support for months and at the time of writing his medical team at Great Ormond Street Hospital (GOSH) in London looks set to turn off his life support and let him die. They will be doing this against the fervent wishes of his parents, Christopher and Constance.

Christopher and Constance want to be able to bring Charlie to America for a highly experimental form of treatment that they think will give him a shot at life. They raised £1.3 (€1.5) million for this purpose, an indication of public interest in the plight of little Charlie.

Doctors at GOSH disagree with the parents. They believe the treatment will be futile and may even cause the baby pain.

Worldwide interest

The case has attracted worldwide interest. It has been through the British courts and to the European Court of Human Rights (ECtHR). The Gards wanted the ECtHR to overturn the decision of the British courts to side with Charlie’s doctors and switch off his life support. But the ECtHR decided to leave the matter with the British courts and ruled the case inadmissible.

Even the Vatican and Pope Francis himself have commented on the matter. That is how big the case became.

The reason it became so big is that there are two crucial moral issues at stake. The first is when it is permissible to turn off life support and refuse certain forms of treatment. The second is who decides, and when, what is in a child’s best interests; the parents or some outside authority, in this case the doctors with the backing of the courts?

The Vatican’s Pontifical Academy for Life issued a statement about the case last week, following the ruling by the ECtHR.

The statement basically sided with the doctors.

It said: “The proper question to be raised in this and in any other unfortunately similar case is this: what are the best interests of the patient? We must do what advances the health of the patient, but we must also accept the limits of medicine and, as stated in paragraph 65 of the encyclical Evangelium Vitae, avoid aggressive medical procedures that are disproportionate to any expected results or excessively burdensome to the patient or the family.

“Likewise, the wishes of parents must be heard and respected, but they too must be helped to understand the unique difficulty of their situation and not be left to face their painful decisions alone. If the relationship between doctor and patient (or parents as in Charlie’s case) is interfered with, everything becomes more difficult and legal action becomes a last resort, with the accompanying risk of ideological or political manipulation, which is always to be avoided, or of media sensationalism, which can be sadly superficial.”

This takes a bit of unpacking as it brings together both of the above-mentioned considerations, namely when can treatment be deemed futile and when can you overturn the wishes of the parents?

The Vatican statement refers to “aggressive medical procedures that are disproportionate to any expected result”. Catholic moral theology does not oblige anyone to undergo such treatment.

Invasive

A good example would be open heart surgery on a very elderly patient. Such an operation is extremely invasive, requires a long recovery time and is disproportionate to the likely post-operation life expectancy of the patient.

In the case of Charlie, the experiment treatment in the US does not involve an operation of any kind, but medication. However, the doctors at GOSH believe it may cause him further pain and would have very little chance of success. In addition, ‘success’ in this case would not be a cure, but rather an outside chance of an improvement in Charlie’s condition.

The crucial issue here seems to be the prospect of causing Charlie pain for little or no effect. The Pontifical Academy for Life appears to believe the treatment on offer to him is out of proportion with the possible benefit effect it may have.

However, even if we accept this (it’s not entirely clear we should), shouldn’t the parents have the final decision here as they have the ultimate moral responsibility to their child and shouldn’t their judgement as to what is in Charlie’s best interests be decisive?

This should almost always be the case, unless the wishes of the parents are very obviously against the child’s best interests, for example when Jehovah Witness parents do not want their child to receive a life-saving blood transfusion.

Now the Pope has intervened in the case. A statement released by the Vatican on Sunday said: “The Holy Father follows with affection and emotion the affair of little Charlie Gard and expresses his closeness to his parents. He prays for them, hoping that their desire to accompany and care for their child until the end is not disregarded.”

Another translation of the statement changed ‘care’ in the last sentence above to ‘treat’, as in ‘treat their child to the end’, implying maybe that the Pope wanted Charlie’s parents to be allowed to take him to the United States for treatment.

In the final analysis, this case is not black or white, it is on the margins. Viewed through the lens of the Catholic moral tradition it is possible to side either with the doctors or with the parents.

The treatment on offer to Charlie is on the border of being excessive and disproportionate but may not quite have crossed that border. If it has, then the courts are right to side with the doctors. If it has not, then they should have sided with the parents.

One thing is certain however; Charlie parent’s, like the vast majority of parents, wanted to go the extra mile for their child, and more, in this case. This is why they had so much public support for their plight, including that of the Pope. They deserve every sympathy.