Hospice for terminally ill children - playing right until the end

TOKYO —

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.”

  • 2

    kimuzukashiiiii

    indeed, shocking that this is the first one in Japan. Im so happy that nurse Richie was so determined in her goal.

    Lets hope much more help is provided for the families of these poor children.

  • 3

    BurakuminDes

    Bless all the kids in there - and bless the nurses and staff too. Toughest job in the world - there is no dispute about that.

  • 4

    TheDevilsAssistant

    It actually hurt reading this article...

  • 1

    cwhite

    for children it should be a fun game till the end

  • 2

    Speed

    The key is helping them to face death and dying “in their own way.”

    I don't think I could bear to tell any kid that they are going to die. Just thinking about it breaks my heart into a million pieces.

    Why on earth can't we spend the billions on warfare and weaponry on finding cures for terminal diseases?

  • 4

    Frungy

    This sort of work is heart-breaking. I used to volunteer in a kids cancer ward once a week back home, and you get to know the kids and love them... and then one week they're just not there anymore. When they get well the nurses are quick to tell you they got well enough to go home, but when they didn't... well, there's a code of silence, because it's just too painful to talk about. Often these kids aren't visited by their parents because the pain just becomes too much to bear.

    If you have time, and if they allow it, I really recommend you volunteer. Research shows that the happier these kids are the less pain they feel.

    P.S. Moderator: Please provide a link to somewhere we can donate directly to this worthy cause.

  • 7

    Johannes Weber

    Anything which helps children in such a situation is good and deserves support - anyone who helps such children is a true hero. And most of all - these children bear the unbearable - more than anyone else ever did. They have strength beyond the imagination of us "healthy" people. The way how society treats its troubled and ill children is the best measure to judge its worth. Seeing past the "ill" up to the "child's heart" is the ideal we all should aspire to.

    A cousin of mine had been terminally ill with mucovisicdosis from the day he was born. His parents were completely open with him about his disease from the start. And even though he knew that he would need luck to turn twenty and would stand almost no chance to reach 30 - he was the kindest, most positive and optimistic person I've ever known. His parents made all efforts to allow him a childhood as normal as possible, despite being in hospital more often than not during some years.

    Reading this, I pay again tributes to him, who died two days before his 21st birthday, in his first year at university, just a month before an organ transplantation, which might have granted him a few more years. What else can I do than remember, carry on in his spirit and live my life for both of us?

  • 2

    FightingViking

    If they ever build such a place near here, I'll be the first to volunteer.

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