From the Field
Ethical challenges in providing pediatric medical care in humanitarian contexts
by Rachel Yantzi
Many humanitarian aid organizations prioritize healthcare interventions for children under five years old. This is due to their increased vulnerability, the high mortality rates in this age group, and because many childhood illnesses are easily treated. Providing medical care to children in the context of a humanitarian crisis brings with it a number of ethical challenges. Some are unique to pediatrics and unique to humanitarian contexts, while others are very familiar to healthcare providers who tend to work in non-crisis settings. During the nine months that I worked as a nurse in the Central African Republic (CAR), I encountered many ethical challenges, some that I anticipated and others that were completely unexpected.
My primary role in CAR was as nurse supervisor at a large referral hospital in a community recovering from years of civil war. The overwhelming ethical challenge we faced in CAR was the reality that many of the children who died in our hospital would have almost certainly survived had they been in Canada. As a pediatric ICU nurse, I am used to having all manner of modern technology at my fingertips. I remember watching a little three-year old boy with pneumonia struggling to breathe for hours. All he needed was BiPAP, or possibly to be placed on a ventilator for a couple of days and he likely would have been fine. Instead, there was little we could do as he struggled for air and eventually succumbed to a simple infection. It was incredibly difficult to see how easily a child could be lost in CAR. In Canada, a huge team of nurses, doctors, specialists, as well as state of the art technology and medications would be summoned to save such a child’s life. The discrepancy was hard to stomach.
One of my roles in CAR was nurse supervisor for the malnutrition treatment program. This role exposed me to a host of unanticipated ethical questions. Our facility was surrounded by a green, fertile landscape that is typical of most regions in CAR. This is in contrast to the dusty and desolate communities often portrayed in the media where malnutrition is a more constant problem. In communities like the one I found myself, malnutrition is seasonal and often coincides with the planting season. When our hospital was packed tightly with malnourished children, the landscape was at its most green and lush. Ironically, most available food had been planted in the ground to ensure next season’s harvest. Years of unpredictable violence and political upheaval had left many families with very little reserve.
Malnutrition strikes the members of a community that are most vulnerable. In our program, this meant that many of the children admitted had pre-existing conditions such as global developmental delay, cerebral palsy, HIV infection or other chronic conditions. Central African families are incredibly resilient, but despite their resilience, many families in the community were just barely getting by. The presence of a child with a serious chronic illness was often just enough to push these children and their families over the edge.
In resource rich countries, having a child with special needs can be a joy but it can also be a burden, both financially and emotionally. Depending on the severity of the child’s disability, they may require round-the-clock care and the support of a whole team of nurses, doctors, physical therapists, occupational therapists, respiratory therapists and others. A challenge faced by humanitarian aid workers is how to support the families of children with special needs in a context where these types of services are almost non-existent.
There were several children I cared for in CAR with severe global developmental delay who presented repeatedly to our hospital extremely malnourished and close to death. We would admit them to the in-patient therapeutic feeding program for a couple of weeks, they would gain weight but ultimately, we could not cure the underlying condition that was predisposing them to malnutrition. We also could do nothing to support their family other than providing psychosocial support sessions and food rations. Patients such as these would present to our hospital every couple of months and we would “save their life” each time. I wrestled with what this meant for the family. What this meant for the ability of the parents to build a stable financial future. What this meant for their siblings. At times I even questioned if saving this child’s life was in the child’s best interest or in the best interest of their family. Some families took the situation into their own hands and quietly left the hospital during the night. I am quite certain that some of these children were allowed to die. Hopefully peacefully. Hopefully surrounded by family, but families were careful to protect us from the full awareness of this process.
In the pediatric ICU in Canada, we often work with children for whom we have done everything that is medically possible, and decisions are made to withdraw care. Sometimes I struggle with these same questions in Canada: Is it in this child’s best interest to continue aggressive treatment when the child has such poor quality of life? The ethics of these decisions felt different in CAR because we weren’t able to provide technologically advanced medical care and exhaust every treatment option.
When families disappeared during the night with their ill child, I struggled to reconcile this with how we would react to a similar situation back home. Humanitarian healthcare workers often do not have the same authority as they would in their professional role in Canada. In Canada, if I feel that a family is jeopardizing the health or wellbeing of their child by refusing medical treatment or by leaving against medical advice, there is a process whereby the medical establishment can strongly encourage, and sometimes even force, families to comply with medical treatment. There are innumerable ethical challenges and pitfalls associated with these situations, but humanitarian contexts are often characterized by the opposite ethical dilemma. If a family chooses to leave the hospital during the night even though the child will die without medical treatment, there is often nothing the medical team can do. Given the circumstances, there may not be anything that the medical team should do to change their decision other than advocate for an end to hostilities, global health improvements, and strengthening of local health systems. These situations stand in stark contrast to the way we would react here in Canada.
The discrepancy between the care we are able to provide in humanitarian contexts versus what we would be able to do back in Canada leads to a number of ethical questions and can be extremely distressing. The challenge is to find a balance between acknowledging that the situation is unjust and advocate for change, while finding a way to provide the best care possible given these limitations.
Rachel Yantzi is a paediatric intensive care nurse and research coordinator at McMaster University. She has been a valuable member of the HHE team since Fall 2017. You can contact her at firstname.lastname@example.org