TOP > Director's Blog > > Paternalism and the Futile Life

Director's Blog

Paternalism and the Futile Life

Japanese Chinese

"I'm your father, and I have more experience in life, so I'll decide for you."

Forgive me for starting with such strong language, but the "paternalism" mentioned in the title expresses precisely that sort of overbearing attitude.

The judgment of adults that I wrote about in "The Eyes of a Child and the Eyes of Adults," which appeared in this column a little while ago, can also be considered a kind of paternalism.

Certainly, there are a number of difficulties involved when inexperienced young people make decision for themselves. There probably aren't children who understand the meaning of getting a vaccination and will decide to get one even though it hurts. Adults are allowed to go against (not ignore) the child's wishes (no vaccination if it hurts) because when an adult makes a decision that will benefit children, this is seen as benevolence.

In medical ethics, when an adult (guardian) makes the decision for a child, this is done on the condition that it is an act of benevolence. The problem is that adults are the ones who also judge whether the act is one of benevolence or not.

One experience, in particular, has greatly affected the moral position I take as a physician. It was my experience treating a boy called "K" who was under my care when I was an assistant at a university hospital about thirty years ago. K started having respiratory problems a few months after birth, and since it would not disappear, he had been admitted to the hospital for a definitive diagnosis. The results of several tests confirmed that he had an illness that caused his muscles to atrophy. According to medical textbooks, there was no cure, and death in childhood due to difficulty breathing could be expected. Respiratory difficulty could be relieved with a tracheotomy or medical ventilator, but a textbook advised that "because this condition cannot be cured, using medical ventilators to extend life is not recommended." I consulted his parents, however, and he began using a ventilator.

Ventilators were not used in Europe and North America for children like K, so when I made a presentation about my experience with K at an international conference, I recall that one prominent pediatric neurologist from North America yelled at me, "What about the burden on the family? Have you ever thought about that?"

Papers on medical ethics in Europe and North America indicate that children like K do not receive life-prolonging treatment. Today, due to advances in ventilators, the number of children with the same condition who now use them is slowly, but steadily increasing. Nevertheless, much of the literature on medical ethics continues to take a position against life-prolonging treatment. Clearly, the problems of medical resources, family burden, etc., cannot be easily resolved.

The ethical judgment against sustaining life is based on the claim that having to use a ventilator all your life is a futile life. How can you possibly stop life-sustaining treatment on basis of a judgment that the child's life is a "futile life"? At present, I find it impossible to accept this view of specialists in "medical ethics" that is based on extreme paternalism. I fail to understand how it is an act of benevolence to assert that a person's life is futile and decide not to sustain it.

As for K today, he depends on a ventilator and is now over thirty years old. Using his eye-movement, the only movement he is capable of now, he has learned to compose and has released a CD.


sakakihara_2013.jpg Yoichi Sakakihara
M.D., Ph.D., Professor Emeritus, Ochanomizu University; Director of Child Research Net, Executive Advisor of Benesse Educational Research and Development Institute (BERD), President of Japanese Society of Child Science. Specializes in pediatric neurology, developmental neurology, in particular, treatment of Attention Deficit Hyperactivity Disorder (ADHD), Asperger's syndrome and other developmental disorders, and neuroscience. Born in 1951. Graduated from the Faculty of Medicine, the University of Tokyo in 1976 and taught as an instructor in the Department of the Pediatrics before working with Ochanomizu University.
Write a comment

*CRN reserves the right to post only those comments that abide by the terms of use of the website.


Japan Today

CRN Child Science Exchange Program in Asia

About CRN

About Child Science


Honorary Director's Blog