Guide to children’s participation in decisions about their health  

Reaching a decision

Managing disagreements and conflicts

Differences of opinion may typically arise be between children and their parents, or children and health professionals, or both. It is important to support and manage disagreements with care and according to rights-based principles, so as to enable the best decisions to be made, to protect the ongoing relationships that are often vital to children’s continuing healthcare, and to enable all parties to move forward beyond the current situation.

The role of health professionals to protect, facilitate and advocate for each child’s right to participate remains unchanged in any circumstance. However, that does not imply that health professionals should agree with or take sides in any disagreement, it is about ensuring that the child is supported to express their opinion, and to ensure that this opinion is considered properly and with due weight in accordance with their rights. Each situation brings its own challenges for health professionals to try to navigate in order to support each child to achieve this right to the greatest extent; whilst enabling the important supportive relationships between the child, parents, and health professionals to remain intact.

Situations of disagreement may test the willingness and skills of health professionals to promote children’s right to participate, who may also worry about damaging relationships with those in disagreement. But the protection of this right is a central duty of health professionals and the principles for meaningful participation can help.

Similarly, whilst health professionals have a duty to support and enable children’s rights to participation, they should not be expected to go beyond the laws of their own country. Therefore, it is important for health professionals to know the legal parameters in their country.  

Cultural differences may at times contribute to misunderstandings. Where appropriate a translator and/or a cultural mediator should be available during the process of information and consent/assent and in the planning of the research. This person should be familiar with the language, including medical terminology, but also social habits, culture, traditions, religion, and particular ethnic differences. This person may need to be available throughout the medical intervention and/or clinical trial, e.g. to facilitate exchanges, adverse events reporting. 

Episodes where there may be different views, or where children may express disagreement with a proposed action, range across a wide spectrum of focus and severity. Scenarios where there may be different views and disagreement occur in all areas of healthcare.

There are some situations where the physical holding of a child who resists a procedure may be used to provide healthcare or to prevent greater harm to the child. These typically occur with young children requiring urgent care and sometimes in complex mental healthcare settings.

Situations like these often create ethical conflicts for health professionals and challenge the application of children’s rights. 
Physical holding should be exceptional and is subject to strict safeguards. It is important that healthcare professionals receive adequate training and support regarding the resort to such exceptional measures and be trained on alternative practices.

By way of example, in the UK, the Royal College of Nursing issues specific guidance on Restrictive physical interventions and the clinical holding of children and young people.

Enabling open communication is often key to resolving issues. However, sometimes serious disagreements over what are the children’s best interests remain among parents, children and healthcare professionals, even after a collaborative decision-making process. It is part of the health professional’s role to mediate and help to restore positive relationships following this (CoughlinKevin W. Coughlin, Medical decision-making in paediatrics: Infancy to adolescence, Canadian Paediatric Society, Bioethics Committee, Ottawa, Ontario).

The following actions may be helpful in mitigating conflict:

  Children, parents/legal representatives and healthcare professionals should be helped to clearly identify the values contributing to conflict and discuss the goals of the proposed treatment/research.

  Early discussion around the expectations, limitations and uncertainties of treatment options and outcomes may help establish mutually agreeable treatment/research plans.

  Cases should be discussed within multidisciplinary teams.

  Further discussions and/or referral for a second, independent medical opinion, should be promoted.

  Consulting with and mediation support from a spiritual care leader, social worker, relevant peers, patient relations expert, bioethicist or a bioethics committee, or with institutional or personal legal counsel.

  In very serious or complicated situations (when the child’s life is at risk or where a severe permanent injury can occur) a court can be asked to decide whether it is right to proceed with a particular treatment.