Julian Savulescu
Dominic Wilkinson’s Response
A judge ruled last week that baby Charlie Gard will have his treatment withdrawn, against the wishes of his parents. His doctors argued that the rare mitochondrial disease (MDDS) he was born with was causing him unbearable suffering.
His parents had raised funds to take him to the US for experimental treatment and they wanted the chance to try the treatment. His doctors argued that such treatment could only prolong his suffering. It was their belief that it was in his best interests for treatment to be withdrawn, and for his life to end, a belief which the trial judge endorsed.
“It is with the heaviest of hearts, but with complete conviction for Charlie’s best interests, that I find it is in Charlie’s best interests that I accede to these applications and rule that GOSH may lawfully withdraw all treatment save for palliative care to permit Charlie to die with dignity.”
This is a profoundly difficult decision, and one in which all parties are acting out of care and compassion for the child. My comments are of course limited as I do not have access to all the relevant facts. However, it does raise an important question about the current basis of such decisions.
Ethics of Limitation of Life Prolonging Medical Treatment
In general, medicine has a presumption in favour of saving life, or prolonging life. There are three justifications for departing from this default. That is, there are 3 justifications for withholding or withdrawing life prolonging medical treatment:
- the patient autonomously refuses it. (autonomy)
- continued life is no longer in the patient’s interests (best interests)
- the probability of the treatment prolonging life, or the quality of life, or the length of time the patient can surVive are too low to justify the cost of the attempt (distributive justice)
Sometimes treatment is withheld or withdrawn because it is “futile.” Dominic Wilkinson and I have argued that although futility is often said to refer to “best interests”, it is more appropriately interpreted as a justice justification for limitation, that is, criterion 3. The reason we have argued this is that the best interests justification (2), requires that doctors establish that life is no longer worth living. That is, that the person would be better off dead. This is a very difficult standard to establish, even if the concept of a life not worth living is coherent. Justice does not require that we establish where the line of of a life worth living is. It only requires a comparative judgement – that compared to other uses of a limited medical resource, this use is not justified. The NHS has thresholds for cost-effectiveness that it routinely employs. A justice justification for limiting life prolonging medical treatment only requires an extension of this every day approach. For example, a treatment which has a 1/10,000 of prolonging a person’s life is a lower priority than a treatment which has a 50% chance of extending life. We need not say that the first treatment is “futile” or confers no benefit to the patient. We need only say that it is very poor value for money.
Read More »Debate: The Fiction of an Interest in Death? Justice for Charlie Gard