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Pediatric Bioethics

September 2019

The Child's Voice 

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Author: Efua Wilmot, DO, PL-2, Children’s Mercy Pediatrics Residency   
 
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Column Editor: John D. Lantos, MD | Director of Pediatric Bioethics | Professor of Pediatrics, UMKC School of Medicine                 

I have had the unique experience of being born in the U.S., but spending 10 of my formative years being raised in Ghana. The choice to return to the U.S. 12 years ago to further my education has given me the privilege of experiencing life in America through a different world view lens.  

Every day, when I arrive to work at Children’s Mercy, I am reminded of the stark difference between how medicine is practiced in the U.S. and in Ghana. One of the biggest differences is not the technology. It is the idea of family-centered rounds. I was very surprised and intrigued the first time my clinical team included the family in our discussion of their child’s care. In Ghana, we never seek the thoughts and input of the patient and the parents in formulating our team’s plan of care. Instead, we are of the opinion that doctors, alone, know what is best for patients. Parents would not be expected to know, and would not want to be asked. How would they know what is good medical care?      

I am now in my second year of pediatrics residency, and I have come to appreciate how vital the input of the patient and their family truly is in choosing one plan of care over the other. In contrast, I grew up in a society where medicine was practiced from an old and reverenced position of power, and with a very paternalistic viewpoint. In Ghana, physicians are seen as next to God. They are thought of as all-knowing—the very stewards of God’s medical knowledge on this green earth. The patient wouldn’t dream of questioning the doctor or offering their input. Instead, customarily, the patient just nods in agreement with every decision the doctor utters and never even asks for clarification on the disease, prognosis, plan of care or medication choices. 

Ghana, like many African countries, ratified the United Nations Convention of the Rights of the Child. This extensive treaty is based on the very principle that “children are not just objects who belong to their parents and for whom decisions are made, or adults in training. Rather, they are human beings and individuals with their own rights.” The Convention defines childhood as a special protected time before the 18th birthday in which children must be allowed to grow, learn, play, develop and flourish with dignity. Article 13 encourages the child’s right to seek, receive and impart information. Articles 23 and 24 both take a health focus and detail the right of the child and their parents to be informed and have access to basic knowledge pertaining to the child’s health.  

The details of the articles included in the UN Convention of the Rights of the Child are all well-meaning, but one might easily question how effectively they are carried out. In a society where resources are limited and doctor-patient ratios are disproportionately unfair to the patient, the physician is strapped for time. He or she will often forgo explaining the very details of a diagnosis, or seeking input from the patient or the family, because there are other patients to be seen. Even when time is not a limiting factor, many Africans live in societies that do not foster the voice of the child. The child’s input is disregarded. It is not considered in any meaningful discussion of the health care plan because, “What experience do they have?” Even in my household, I was taught not to question elders as they were the beacons of wisdom in society. Given this backdrop of such a stifling society, how does a child begin to exercise their freedom or satisfy their curious mind?       

Medical ethics, as practiced in North America, gives great regard to the “respect of persons” – incorporated within the principle of autonomy. For children, we think about developing autonomy. They obviously begin life with no autonomy. They are totally dependent on their parents for all needs and decisions. As they mature, they gradually begin to understand the world around them, gain a voice, and contribute to decision-making. Of course, this all is contingent upon the parental inclination to introduce even the young child to the notion and possibility of choice – first the simplest of choices, but later increasingly more complex matters. To make choices, the child must be respected as a person, a soon-to-be fully autonomous young person. And with this recognition, the child is included in the provision, understanding, and ability to give voice to their own desires. This is what the UN Convention of the Rights of the Child really means, and what societies like Ghana must aspire to if they truly want to “walk the walk and not just talk the talk of children’s rights.”