Can a child refuse medical care?

by lmr98 on September 11, 2016 - 8:38pm

In the article “Heaven over hospital: Parents honor dying child’s request” Elizabeth Cohen from CNN raises an unusual situation concerning medical care; can a five-year-old child decide on her own to refuse medical care. 

First, Elizabeth Cohen tells the story of Juliana Snow, a five-year-old girl suffering from an incurable and serious disease. Juliana personally asked her parents to stay at home if she had to go back to the hospital with a greater risk of death. The ethical issue lies within the answer of the parents: they accepted to honor their daughter wish which is refusing to go back to the hospital. If she does not go to the hospital, she is going to die.

Art Caplan, a bioethicist, disagrees with the decision made by the parents. He states that a five-year-old girl does not possess all the knowledge and thinking required to make a crucial decision. He argues that a four-year-old can choose what they want to eat for dinner or what game they want to play but cannot refuse medical care especially if it means death. Also, having a child with a disease similar to Juliana’s can cause a lot of suffering for the parents; and therefore, the child might want to please them by stopping their suffering.  Juliana’s parents, Michelle and Steve, told their daughter that heaven was a place where she could live a normal life. Moreover, they mentioned that she would not be alone in heaven and they will be joining her someday. Unconsciously, they helped make a decision; nobody knows what going to heaven means.

Moreover, the majority of the article mainly consists of understanding the choice made by Juliana’s parents. Doctor Chris Feudtner does not believes that Juliana’s experience is irrelevant. On the contrary, she is the one who has to live with this disease so no one can really know what she is experiencing except herself. He disagrees with a four-year-old not having the thinking process required to make a decision about death. He argues that adults can also experience difficulties understanding the meaning of death. Also, Juliana’s nurses and doctors agree with the decision made by her parents. They think that even if an infection occurs the possibility of saving her is small. They cannot do anything to help her in the long term which means it is just a matter of time before she dies.

Stating that Juliana should have the power to decide about medical care demonstrates the sanctity of life. She might have a chance to fight against her disease and potentially gain more time with her family. Also, the ethical principle “do no harm” is supported by respecting Juliana’s wish; her parents will see her suffer if an infection occurs. This brings up the value of rationality; letting your five-year-old girl decide on whether or not she will live is not something that is common. Parents usually fight for their child’s life rather than allowing them to make their own choices at such a young age; they have parental responsibilities towards their child. On the other side, allowing a child to make a major decision respects one’s autonomy. Juliana has the autonomy to decide the fate of her life which means that she is acting in accordance to her own best interest. For the little girl, living with this incurable disease has completely changed her quality of life. She cannot act like a normal child and stopping her pain will end her suffering. By stating this, everyone’s interests should have an equal consideration, Juliana’s wish should be considered regarding her young age; she has as much of a say as her parents. Honouring Juliana’s wish demonstrates compassion from her parents which also signifies respecting their daughter’s individual freedom. Refusing medical care allows Juliana to die with dignity at home instead of the hospital.

Finally, I do not think that every child can make a decision about medical care but I believe that it depends on the health of the child. The child is the best judge about his condition and in this way he should have the right to decide. These kinds of situations need to be taken into consideration individually. Each child has their own stories and struggles and therefore, evaluating his condition will be more beneficial than establishing the right age to make these difficult choices. What should be the appropriate age for a child to decide whether or not he wants medical care, especially when it implies death?

Elizabeth Cohen. “Heaven over hospital: Parents honouring dying child’s request?” CNN, 3 November 2015, http://www.cnn.com/2015/10/27/health/girl-chooses-heaven-over-hospital-part-2/ . Accessed 10 September 2016. 

Comments

Wow, you definitely bring up a difficult and very interesting subject. I agree with you that each situation needs to be taken into consideration individually. It is a difficult decision for a child to decide if he wants to die or not. In a way, I agree with the fact that they are too young to truly grasp what it means, so it is not rational for them to decide. Kids often say one thing, and then later change their mind. A child is also easily influenced, and the parents telling him about heaven might unintentionally convince him to want to die. I also believe that there is always hope and that she might be cured if she keeps fighting for it, so the sanctity of life weights heavy for me. Yet, I can also see the other side: if her disease is incurable, then she should have the right to decide how she lives out the remaining of her life. It is part of her autonomy and taking into account her own best interest. Both sides are very strong, but overall, I think, that she was too young to take that decision. For me, a five-years-old is too young. I do not know exactly at what age it is appropriate, but maybe I would say older than 10. But then, how do you determine if a child is old enough to choose for himself?

I really liked your post! Everything is clear and easy to understand. As soon as I saw the title of your post, I knew I had to read it. I agree with you, children are not aware of all the consequences that are related to refusing medical care. At 5 years old, a child does not know enough about life to take a decision that impacts his life. Children are often influenced by their surroundings and do not always use the best solution to solve a problem. His parents could also have had an impact on his decision. Since we consider humans to be mature and responsible at the age of 18 years old, how can a 5 years old child decide whether or not he wants to live or die? I think that children do not know enough and are not mature enough to take a life decision like that, when 18 years olds can’t even decide which college they will attend. However, if the child is suffering, is it moral to keep him alive?

Wow! Your article about the little Juliana touched me! Both sides are really well supported and detailed and this is why taking position is especially difficult in this ethical issue. I totally agree with you when you balance your position between both sides. However, I think I will let, most of the times, the decisions to the parents of sick child. In my opinion, parents, helped by health professionals would be able to take an enlightened decision, probably knowing a lot of information on the disease, its symptoms and consequences. They are not left to themselves. Although they cannot live the pain, they have a major advantage to be able to see and analyze both sides of the issue with their maturity. Also, considering that parents will always act for the well-being of their child, we can assume that they would take the most appropriate decision regarding their situation. In this case, choosing to let the parents make the decision would reunite both values of the debate. They take in consideration their knowledge of the situation, their experiences and maturity and also largely considerate the well-being of their child, this part of themselves. Finally, for adults that have intellectual disability, should we generalize this practice and ask their parents to take the decision?