Should parents be allowed to go against doctors' advice?
It's an issue that gets discussed frequently in the healthcare community. How do healthcare providers override parents wishes when they want to make bad medical decisions for their children?
That topic is the subject of new research released today by Monash University in Australia and Oxford University in the UK.
Jehovah's Witnesses often come up in this debate. In 2017, it's generally accepted in the medical community that doctors should override a parent's request to deny their child a blood transfusion in life-threatening circumstance. It's taken some time to get to this point, but doctors will generally save a child's life over respecting religious preferences.
University of Auckland medical ethics theorist Monique Jonas says, "In New Zealand, a parental refusal of a blood transfusion or blood products for a child can be overridden if it is considered that the refusal imperils the life or health of the child.
"However good practice is to try to work with the family and find alternatives if the alternatives are as safe as a transfusion. If possible, conflict should be avoided and over-riding parental refusals is a last resort, but sometimes a necessary one."
Less understood is how doctors deal with parents who go against doctors' advice for their kids in non-life-threatening situations.
Sometimes, they'll request suboptimal treatment for their treatment, which can mean anything from less effective medical solutions, to equally-effective but more expensive solutions (when funded publicly).
One example is the administration of surfactant replacement therapy (SRT), which is the optimal treatment for respiratory distress syndrome in very premature babies.
SRT contains pork-derived ingredients which may be objected to by Muslim and Jewish parents, as well as parents who uphold animal rights or come from a vegetarian/vegan background.
Both bovine-derived and synthetic alternatives are available, but the cow product is both less effective and more expensive, while the synthetic product is more expensive, but equally effective, to the pork product.
It's important to note that if a patient of legal age chooses to refuse any treatment based on religious or other beliefs, that will be respected by doctors (even if they see it as an irrational medical decision).
This is problematic when it comes to underaged people who cannot make their own medical decisions and must rely on others. What's the parental point of view on this?
It's a difficult area, as we saw in a similar debate earlier this year when anti-vaccination parents voiced their concerns in line with the release of the documentary Vaxxed.
According to the study, most parents believe the request for a less effective treatment for their child should be provided if the child's mortality risk only increased marginally (up to a maximum of 19 per cent risk of death).
However, parents are less inclined to request a suboptimal treatment that would increase a child's disability risk. This shows that the general public is perhaps most concerned with disability than anything else in relation to child health.
Furthermore, 28 per cent of parents agree with absolute parental refusal of treatment for a child, regardless of whether a suboptimal substitute is available or not.
Study participants are more likely to agree to parental refusal of treatment when it's respectful of religious beliefs, as opposed to other reasons.
How does this contrast with doctors' views? While 28 per cent of parents agree with complete refusal of treatment, more than 80 per cent of oncologists, for example, deem it unacceptable for a parent to refuse chemotherapy treatment for cancer when there's a moderate or good prognosis.
"Doctors are bound by the principle of best interests – they need to ensure that children's interests are served," says Jonas.
However, doctors usually apply a "pick your battles" approach. "That goal is not best met by over-riding parents every time they make a decision that doctors disagree with: it is usually best for the child if doctors maintain a respectful and collaborative relationship with parents," Jonas explains.
"The risk if they don't is that parents will withdraw from contact with medical practitioners, and children will not receive any care. Also, it is important to maintain some humility in one's approach with all patients: doctors do not always know best, and good doctors are very aware of that."
As a final resort, doctors may seek a court order declaring that treatment will be lawful, if parents do not agree with medical advice and the child's best interests will otherwise be compromised.
However, the vaccination dilemma has provided a good framework in which doctors can apply a methodology based around building trust with parents.
"Parents are not legally obliged to vaccinate their children," says Jonas. "An example of the preferred approach in New Zealand is to inform, explain and work with parents, rather than force certain treatment decisions."
Lee Suckling has a masters degree specialising in personal health reporting.