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2008年12月 4日 (木)


(Mainichi Japan) December 3, 2008

A place to say goodbye: hospice care for children in Australia offers Japan hope




I went to see director Yojiro Takita's film, "Okuribito," which explores the meaning of life through the story of an undertaker. I had just returned from a visit to a children's hospice in Australia, as part of the Mainichi Shimbun's "Ikiru" (life) campaign to support children with cancer and their families, and I felt a strong need to think about what it means to accompany someone to the end of his or her life. In one scene of the film, the hero (the young undertaker) watches salmon fighting their way upriver, where they are doomed to lay their eggs and die. "So pointless," he murmurs. One of the men who work at the crematorium tells him, "They're trying to get home." The short dialogue, spoken in the dialect of Yamagata, where the story takes place, somehow stayed with me. It made me think that all of us want to be in a place like home when we say our final goodbyes.


In Australia, I joined a group of specialists in health care and public welfare, led by Alfons Deeken, a thanatologist and professor emeritus at Sophia University. I was reluctant to visit the hospice at first, because I could not shake off my preconception of hospices being cold and isolated places that should not be intruded upon. In Japan, hospices accept only patients who suffer from cancer or AIDS, primarily because medical insurance will cover hospice care only for these illnesses. Most Japanese hospices are operated by the same hospitals that offer medical treatment for these maladies, so we tend to regard them as "hospitals for people with terminal cancer."


In Australia, I realized that this is a misconception born of ignorance. Hospices are not strange places, and they don't categorize patients according to their illness. They are "support centers" that help people who can no longer be treated, and who have left the hospital so that they can spend their last days in peace with their families. Local residents often help out as volunteers, and operating costs for the hospice I visited were almost entirely supported by donations.


"Very Special Kids" is a children's hospice near Melbourne. There, I met a woman named Aiko Yokoyama, who had recently parted with a 7-year-old daughter who had a brain tumor. Yokoyama told me how the staff had eased the burden on the family as they cared for their sick child, not only by helping with things like medication, laundry and meal preparation, but by offering them moral support.


The support was given in a casual way, with the offer of a cup of coffee just when a family member needed someone to talk to, or a fragrant oil massage on the hands while the child slept.


Yokoyama's daughter said goodbye to her family three months before my visit, after spending her final days at the hospice. This particular hospice offers long-term emotional support to families even after their loved ones have passed. On the day of my visit, the sister of the girl, two years younger than her sibling, played cheerfully with staff and playmates she had befriended in the neighborhood. Her mother had been worried about the effect of her sister's death on the younger child, and confided how relieved she was to see her smiling again.


Children's hospices were first introduced in Britain in 1982. The first hospice is reported to have begun when a nurse-cum-nun helped care for a 2-year-old girl who had been brought home by her mother after doctors said the child's brain tumor was untreatable. Specialists say that bereavement for a loved one is deepest in the case of a parent losing a child, and they say the grief cannot be dealt with entirely at the individual or family level. But although there are 181 hospices in Japan at present, none of them specializes in the care of children. And while there are short-stay facilities to support families who care for elderly people, there are virtually no comparable places for children who also need round-the-clock care.


Every year in Japan, 330,000 people die of cancer, accounting for 30 percent of all deaths. About 3,000 children, 15 years of age or younger, become ill with cancer every year. Not all of them will ultimately require hospice care. Nevertheless, I believe that Japan has a responsibility to support these children if and when they need it. This is what it means when a state has pledged to insure "the right of the child to enjoy a full and decent life," as stated in the "Convention on the Rights of the Child" (ratified at a U.N. General Assembly in 1989), which Japan also signed.


The Mainichi "Ikiru" campaign has offered its support to families with seriously ill children and to the medical specialists who work zealously to help them. Almost 70 percent of child cancers are now curable, but many families still have to say goodbye. How can we support these children and their families? My visit to the hospice in Australia taught me that grieving families need help from a community in addition to specialized medical help.


In the old days, the undertaker's task was carried out by family members in the local community. Social ties have long since been given up for lost, but perhaps we need to create new ones, so that we can help people say goodbye in an atmosphere of peace and dignity. (By Kozue Suzuki, Evening Edition Department, Mainichi Shimbun)


毎日新聞 2008122日 東京朝刊


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