No Easy Answers When Kids Are Terminally Ill

Since I first read about the 13-month-old Canadian child named Joseph who recently came to St. Louis for a life-extending treatment, I’ve been thinking about my older sister. The one who I never knew because she died when she was only a month old.

Danielle was born in 1969 with a defective esophagus, which meant that food had no way to travel from her mouth to her stomach. As my parents struggled to find a way to pay for a potentially life-saving treatment at a facility many hours’ flight from our home, a nonprofit agency stepped up to foot the bill. She had surgery, but ultimately it was unsuccessful and she died.

This mirrors Joseph’s plight in a couple of ways. He too was flown far from home by a nonprofit for care that would extend his life for a few months. However, thanks to his parents’ efforts to use social media to encourage Canadian medical officials to let him live a few more months even as his health declined, and to political activists on this side of the border who are intent on using the story to play on our fears of rationing, his life has become something to fight about, not something to celebrate.

My heart goes out to his parents. Although I don’t know the pain they are feeling, my mom and dad do. I watched them decorate Danielle’s grave each Memorial Day, and I know they quietly supported other families who had also lost children. I hope the comfort they took in remembrance is something Joseph’s parents will experience too. They have already lost one child, and no amount of political mileage will change their sense of loss.

Last year Public Radio International reported an excellent series about health care rationing in four parts of the world. It raises the tough decisions that doctors, nurses and ethicists have to weigh as they determine how to spend limited resources. This is the real story in Joseph’s case: how to spend finite resources.

The Canadian doctors have been made out to be the “bad guys” in this saga, and I don’t think they are. It’s definitely not fair that he should die because the money’s not there to keep him alive. It also would not be fair that he should get all the money and other children might suffer because there’s none left for them.

There are no easy answers.

By Amy De La Hunt, Health Blogger for SmartParenting