Hospice for terminally ill children - playing right until the end

The astonishing thing is not that this facility exists but that nothing like it has in Japan until it opened on Nov. 1.

It’s a children’s hospice attached to the Yodogawa Christian Hospital in Osaka. There are an estimated 200,000 children in Japan with illnesses serious enough to require constant care. Many of them are terminal. The world’s first children’s hospice was founded in England in 1982. Anglican Sister Frances Dominica Ritchie, a qualified nurse, was instrumental in its founding. She came to Japan three years ago with the intention of setting up something similar here.

It was an uphill struggle, reports Josei Jishin (Dec 4). Public funding was available in Britain but not here. Moreover, attitudes here were negative and largely remain so. Children and death are two incompatible images, or so we like to think. It’s painful to face the fact that children die and must be cared for with their imminent death in mind. Ritchie pushed hard and skillfully, thanks to which the Yodogawa facility is now a reality. But there’s no sign of it being in the vanguard of a gathering movement.

With two doctors and 14 nurses it accommodates, at present, 30 children. What of the rest?

Roughly half are hospitalized; the other half are cared for at home. Both situations have their drawbacks. Hospitalization with no end in sight is hard on anyone, particularly on children. But home care isn’t easy either. Complex equipment – respirators and so on – must be installed. Often live-in nurses are required. A hospice can make the best of a state of affairs that is agonizing almost by definition.

But it’s not what many people think it is. “Until now, hospices have had this negative image – it means the case is hopeless and you’ve given up on treatment,” Yodogawa hospice director Makoto Nabeya tells Josei Jishin. “It’s not true. A hospice is a place where children live” – and where treatment continues.

But death, if not inevitable, is an inevitable presence. “With adults,” explains nurse Yuko Toba, “you can tell them, ‘You have a year to live, you have six months to live, be prepared.’ With children it’s less predictable. Chemical treatment works better on them. On the other hand, talking to them about the end is more difficult.”

It would be good, perhaps, if it could be hidden from them, but that’s impossible. As anyone who deals with children knows, they understand a lot more than many adults think they do. The key is helping them to face death and dying “in their own way.”

It sounds bleak only to those unfamiliar with the environment. Nurse Satsuki Hirayama recalls the time she was on night duty, laboring in the office and dead tired, when a call came from a seven-year-old boy suffering painfully from cancer. She ran to his room. The boy was shocked at how exhausted she looked. He smiled and – intravenous tube stuck in his thin arm – patted the bed with his hand. “Sit down,” he said. “Have a rest.”

“My fatigue just melted away,” says Hirayama.

Ill or not, dying or not, play to a child is all-important – a fact Nabeya, the director, never loses sight of. “No child is so ill he or she doesn’t want to play,” he says. “Play is freedom. Let them play happily right up to the last minute.”

© Japan Today