How to involve parents in medical decisions about very young children? 'The values and perspective of parents deserve attention'

In complex medical decisions during pregnancy or in very young children, the medical perspective and the values of the parents play a role. Taking these parental values into account can be challenging for doctors in practice. Pediatric neonatologist Rosa Geurtzen of Radboudumc Amalia Children's Hospital wrote a review on this topic in The Lancet Child & Adolescent Health.

For instance, if a baby is in the ICU and develops complications that will have future consequences, such as a brain hemorrhage, as a doctor, do you continue ICU care or not? In such a situation, where the child is too small to decide, the perspective and values of the parents or caregivers play a significant role. However, it is challenging for a doctor to map them out effectively.

Analyses of conversations reveal that an open discussion about values and a shared approach are sometimes lacking. ‘Doctors can influence the conversation by emphasizing advantages or disadvantages unilaterally or giving much more attention to a particular option. Or they hint, unconsciously, their own values’, says pediatric neonatologist Rosa Geurtzen. ‘In that case, the choice for parents may not feel equal. Doctors need to be aware of this. Training, tools, and allocating more time for the conversation can help.’

Perspective

Furthermore, parents may not always be aware of their underlying values, and it can be challenging to construct them in an intense situation. Parents usually don't bring up their values spontaneously. ‘Care professionals should actively guide parents to discover and discuss their values’, says Geurtzen. ‘This can be achieved by asking good questions, adopting an empathetic attitude, providing continuity, and being supportive, regardless of the decision.’

The preferred extent of the parental role in a complex medical decision also varies. These choices are emotionally burdensome, ethically complicated, and the future is often uncertain. Geurtzen: ‘Some parents do not want or cannot participate in the decision-making. In that case, as a doctor, you must be willing to bear the burden of a decision. But ultimately, all parents want their perspective on life to be taken into account. As a physician, it's about taking those values into account appropriately, to arrive at the best possible decision together.’

Guidelines

Research shows how crucial it is to involve parents. Multiple studies indicate that parents feel stronger and can cope better with the situation when they are actively involved in decision-making. Parents who are engaged in deciding to stop treatment, leading to a baby's death, experience less grief a few years later than those who did not participate in the decision.

The most important tool for this: an open and active conversation with parents, where information flows both ways. Geurtzen: ‘The doctor's knowledge is primarily biomedical. But parents consider others in their environment, as well as social, psychological, and spiritual factors. These values are important and need to be taken into account. Doctors should become even more aware that shared decision-making means actively deliberating with the parents. In our review, we provide tools.’

About the publication

This review has been published in The Lancet Child & Adolescent Health: Incorporating parental values in complex paediatric and perinatal decisions. Rosa Geurtzen, Dominic J C Wilkinson.

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