Re: Alfie Evans and Charlie Gard—should the law change?
These two cases (Charlie and Alfie) highlight palliative care and what is, and is not, ethically and resourcefully and financially possible. Before any discussion can take place everyone should know what the reality of the situation is. The description of Alfie's cerebral anatomy as being mainly fluid doesn't help. He was maintained on a ventilator for 16 months. Was he brain dead - in which case he would die within days if not weeks, and there should be no discussion required? If not brain dead was he in a persistent vegetative state or other similar condition with indefinite duration and prognosis? If the latter was the case, and from what occurred this must have been the case, the issue seems to be around what is and what is not acceptable or ordinary medical treatment in such cases. The problem would not arise if access to high tech medicine and facilities were not available. To say that treatment was harming the child when the opposite - no treatment at all would do far more harm (in fact cause death) is not an argument.
A person (or guardian in the case of a minor) does not have to undergo extraordinary or extreme treatment from an ethical standpoint, but they may if they so wish. Whether ventilation is an extraordinary or extreme treatment for babies or adults in persistent vegetative state or other chronic states of semi or unconsciousness may depend on the case, but generally it is used and seen as "treatment as usual." The resource issue is important as is the impact on relatives and caring staff. This total burden of care is pitched against the person's right to live and the wishes of loved ones, and who can judge the value or quality of a life? Does it come down to money? If you can afford it you can have it, if not well then sorry? Many families crowd source finances to send children abroad for expensive treatments and transplants and they get them.
Without going over the top and being a zealot you could say that staff in hospitals and ethicists, and the judiciary, should be more sensitive and responsive and supportive of views held by loved ones for the lives of their sick relatives. Everyone does not agree that ventilators should be switched off in such circumstances. When a situation is futile meaning the patient is at risk of imminent death that is one thing, which really is not an issue about longer term palliation. However the term "medically futile" seems to have evolved to mean "there is no hope of improvement or recovery to any significant degree" - which is not medically futile but the management of a chronic enduring illness. If "medically futile" was applied to any other of the chronic diseases with similar implications as in the cases in question, all treatment would be stopped. The term "medically futile" is inappropriate terminology for ongoing situations of illness of whatever degree.
When all the heat is gone and heads are clear the bottom line is something like:
"Alfie will probably live X months or years if ventilation is continued. He will die if ventilation is stopped. What do his guardian's want? Is it possible to facilitate their request or will they have to raise funds themselves? The right to life is the most fundamental right a person has, and if that is what the parents wanted, and it was medically possible (let the experts decide that) and financially affordable, it should have been respected.
Competing interests: No competing interests