When parents disagree with doctors on a child's treatment, who should have the final say?

Doctors and parents sometimes disagree about a child’s medical treatment. As the recent case of six-year-old boy Oshin Kiszko highlights, some disagreements between doctors and parents can’t be resolved by further information and discussion.

Oshin has brain cancer. His doctors believe he should receive treatment aimed at curing his disease, while Oshin’s parents believe the potential benefits of treatment don’t justify side-effects and other negative outcomes for their son, such as the possibility of long-term health issues.

They want Oshin to receive only palliative care to ensure his comfort in the remaining months of his life. In March, Western Australia’s Family Court mandated Oshin be given chemotherapy. The most recent judgement, after another two court cases, supports a palliative pathway for Oshin as his chance of a cure has decreased.

Oshin’s case is unique. Not all disagreements between doctors and parents reach court. Many are resolved in the hospital and many do not involve life-threatening conditions. In our recent research project, we investigated types of conflicts that can arise between doctors and parents in a paediatric hospital and the ethics of these situations.

We developed an approach called the “zone of parental discretion” to assist doctors in deciding whether a parental choice should be overridden. This is a tool that holds it is ethical for doctors to accept a treatment option parents want, providing it is good enough, rather than insisting on the best possible treatment.

What’s in the best interests?

Parents are the default medical decision-makers for their children for many ethically important reasons. Usually, parents know their children best and this knowledge – alongside the clinical expertise of doctors – is important in understanding how their child may experience a particular medical treatment. Parents also bear the primary burden of the medical decisions made for their children, caring for them in the long term.

But the parental right to make medical decisions is not unlimited. Their decision-making role is sometimes questioned when they don’t agree with the recommended treatment for their child. There are many ways in which parents may do this.

They might, for example, decline diagnostic testing they perceive as unnecessary. Others might refuse aspects of physiotherapy they see as distressing for the child, such as painful stretching. To avoid blood transfusion for religious reasons, parents sometimes prefer a different, less-effective form of surgery to that recommended by the doctors.

In one case, parents declined artificial feeding for an undernourished child with a disability, preferring the child remained lighter for lifting. And in other instances, parents of children with cancer have refused conventional treatment in favour of alternative therapies.

Traditionally, clinicians have thought in terms of the child’s best interests when deciding how to respond when parents disagree with their recommendations. Acting in a child’s best interests means doing the thing that will have the best possible outcome for him or her. There are two main problems with this approach.

First, a child’s well-being is made up of different elements, such as being free from pain, having a long lifespan, having meaningful relationships and being able to play. There is no straightforward way of calculating well-being and comparing it across treatment options to identify which would be best. And there are often several possible courses of action, each of which would benefit the child in different ways.

Second, the best interests approach may not adequately acknowledge parental autonomy. Parental decision-making often involves weighing up the interests of different family members – which are ethically appropriate considerations – and parents may be choosing against the best possible outcome for a particular child in order to care for the family as a whole.

When there is an entrenched disagreement between doctors and parents, focusing only on whether the parents are choosing in the child’s best interests is ethically problematic. Doctors should balance the child’s well-being and the parents’ autonomy by accepting choices that may be sub-optimal for the child, as long as they are not harmful.

Striking the right balance

Parents refusing treatment for their child is one type of situation for which doctors seek clinical ethics advice in paediatric hospitals.

Although clinical ethics support services are widespread and longstanding in the United States and United Kingdom, in Australia they are in their infancy. Over the past decade, clinical ethics support has been established at a few large metropolitan hospitals and more hospitals are working to make these services available to their staff.

We know that some clinical ethicists find the “zone of parental discretion” idea helpful when working through issues of disagreement about a child’s treatment. This approach focuses on the potential harmfulness of the parents’ decision rather than trying to identify and insist on the option in the child’s best interests.

There are some parental choices that do not optimise the child’s well-being but will not harm the child. For example, the parents’ preferred form of surgery may not be the best available, but may still be very likely to effectively treat the child’s condition. Such decisions fall within the boundary of the parents' discretion and should not be overridden.

The outer boundary of the zone of parental discretion is harm to the child. Parents are not ethically entitled to choose options that may harm the child. For example, if parents are refusing physiotherapy necessary to ensure their child will walk again, this choice is outside the zone of parental discretion and should be overriden.

Thinking about situations of deep disagreement in this way enables clinicians to respect and balance the two important values of parental autonomy and children’s well-being.

The zone of parental discretion is a conceptual tool, suited both to formal clinical ethics case discussions and more informal reflection and decision-making. By expanding our thinking beyond only “best interests”, we give clinicians more helpful ways of working ethically through these very difficult situations.

Rosalind McDougall receives funding from the Australian Research Council. She is a co-convenor of the Australasian Clinical Ethics Network and a member of the Children's Bioethics Centre.