Jeffrey Goldhagen on giving children a voice in medical decision-making

Medical sciences, often built on a relationship focused on diagnostics, have not traditionally been attuned to giving children a voice in healthcare - despite children communicating their needs since birth. Yet, that is slowly beginning to change. We spoke with Dr Jeffrey Goldhagen, Professor of Paediatrics at the University of Florida and President of the International Society for Social Paediatrics and Child Health, on the importance of taking a child rights-based approach to children’s healthcare. 

The Convention on the Rights of the Child grants children the right to be heard and for their voice to be given due weight. This right is granted to all children, yet it is still a commonly held belief that only older children can express themselves meaningfully and influence adult decision-making.  

Medical science has proved this notion a myth. Only some decades ago many emergency operations on premature infants were routinely conducted without anaesthesia, until research into the frequency of babies’ cries in 1982 discovered that they expressed different pain levels and needs through different frequencies. In other words, infants tried to communicate with the adults they were surrounded by. We just did not have the right tools to listen. 

Towards a comprehensive approach to child health

Learning to listen to children changed the way neonatal care was practiced.  These days all operations are conducted under anaesthesia.  

Despite these advances in understanding how children communicate, the medical field is often not included in discussions around child rights, particularly children’s right to have a voice in decisions impacting their lives. Some advocates are challenging this status quo. One of them is Dr Jeffrey Goldhagen, Professor in Paediatrics at the University of Florida and President of the International Society for Social Paediatrics and Child Health (ISSOP), who has an ambitious agenda of bringing the concept of child rights into the field of medical science. 

His passion for a child rights-based approach was ignited during his time in South-East Asia as a young doctor, where the gap between clinical paediatrics and the health outcomes for children ‘in the real world’, as he puts it, became obvious. Children’s health was most importantly impacted by poverty and conflict, not by what happened at the doctor’s office.   

“Healthcare produces only 15 to 20 per cent of health outcomes, so how do we address the 80 per cent?” he says.  

This observation sparked an interest in social paediatrics, an approach that looks at children’s health through the broader environments and communities they live in. Dr Goldhagen wanted to find a more holistic approach children’s needs and found the answer in child rights.   

Since then, child rights have provided him an overall framework that everything needs to be anchored in. Instead of focusing on narrow diagnoses, the Convention looks ‘at the whole child’, Dr Goldhagen says, and articulates the rights required to address the civil-political, social, economic, and cultural determinants of child well-being.  

Slow but steady progress

The medical field is advancing rapidly, yet new ideas are slow to trickle down. It takes approximately 17 years for a new finding in medicine to be incorporated into practice, Dr Goldhagen says. Still, there has been a slow move from a strictly epidemiological approach to one that looks at the social and environmental determinants of health. The impact of poverty, discrimination, or even climate change on health outcomes is now well documented. 

This has also ignited a conversation on children’s role in their own healthcare. While adult patients appreciate a doctor asking questions before making a diagnosis, children often have not enjoyed the same opportunities to participate in decision-making related to their healthcare. The past decades have demonstrated a slow shift, with a growing number of countries making health care services available for adolescents without parental consent, particularly on sensitive issues such as reproductive or mental health. Some health care providers are starting to communicate more directly with children, and asking children for feedback on their care, recognizing their agency in their own health.  

Children’s participation in medical decision-making is always a balancing act between the right to participate, the best interest of the child, the rights and concerns of parents, and broader questions about medical ethics. But not asking children the right questions can have serious consequences. Listening to children not only has tremendous positive outcomes on their health, but it also boosts the professional satisfaction of medical professionals, Dr Goldhagen believes.

“It’s a lot harder than just diagnosing a child with anaemia, but it can be life-changing.” 

Looking beyond the doctor’s office 

The progress on child participation in the medical field must be seen in the broader context of governance, Dr Goldhagen says. He has been exposed to the change of mindsets first-hand as a prominent advocate for community-based child and youth participation, beyond the field of paediatrics.  

He sees adopting a child rights-based approach to paediatrics meaning a call to act beyond the healthcare systems to address health outcomes more broadly and advocating for children’s right to be heard in all decisions impacting their lives in their communities.  

“You have to move from the four walls of the clinic to work at the systems and community levels”, he says.  

This has brought him often to work together with youth from some of the most vulnerable communities (or, as Dr Goldhagen prefers to put it, ‘vulnerated’ communities) who experience health inequities directly in their own lives. Strengthening their opportunities to make their voices heard often requires going back to the root causes that caused those inequities in the first place.   

Just like social paediatrics, it comes down to looking at the whole child.

Bio

Dr Jeffrey Goldhagen is Professor of Paediatrics and Chief of the Division of Community and Societal Paediatrics at the University of Florida-Jacksonville and President of the International Society for Social Paediatrics and Child Health (ISSOP). He has worked on numerous projects to ensure better child medical services and public health for children.  

In his current role as the President of ISSOP, Dr Goldhagen works with a range of stakeholders to ensure that children have access to medical care and healthy lives and development. His work addresses issues such as violence against children, climate change, and child rights violations. Dr Goldhagen has extensive experience across various thematic areas of child health, rights, and participation, and has advocated for these issues globally.