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2008年12月 4日 (木)

記者の目:豪州の子供ホスピスを視察して=鈴木梢(夕刊編集部)

(Mainichi Japan) December 3, 2008

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

記者の目:豪州の子供ホスピスを視察して=鈴木梢(夕刊編集部)


 ◇鈴木梢(こずえ)

 ◇「みとる」ための環境創造を--地域で受け止めたい

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.

 「納棺師」の姿を描きながら「生」を見つめた映画「おくりびと」(滝田洋二郎監督)を見た。今秋、小児がんと闘う子どもや家族を支援する毎日新聞の「生きる」キャンペーンの一環でオーストラリアの子供専門ホスピスを訪ね、「『みとる』とは何か」という問いを真正面から突き付けられたからだ。映画では、サケが産卵し死んでいくため川を遡上(そじょう)する光景を見て、主人公が「むなしい」と言ったのに対し、火葬場に勤める男性が「戻りたいんだ、故郷に」と、舞台である山形の方言で答えた場面が印象的だった。誰しも、自分が慣れ親しんだ場所でみとられたいと願うものではないかと感じた。

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."

 オーストラリアでは、「死生学」を専門とする上智大のアルフォンス・デーケン名誉教授による、医療や福祉関係者のための視察に参加した。当初、施設を訪ねる足取りは重かった。ホスピスといえば「冷たく隔てられた場所」という印象がぬぐえず、安易に立ち入ってはいけないようで気後れした。日本でホスピスを利用できるのは、がんと後天性免疫不全症候群(エイズ)の患者に限られている。医療保険の適用が二つの病気にしか認められていないためだ。日本のホスピスの大半は、治療を目的とする患者と同じ一般病院が使われ、「末期がん患者のための病院」と思われがちだ。

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.

 現地に着き、それは不勉強による認識不足だと分かった。ホスピスは特殊な場所ではなく、病気の種類で患者を区別する場所でもない。治療を望めない患者が入院先から地域に戻り、家族と最後の時間を安らかに過ごす手助けをする「支援拠点」だった。住民の多くがボランティアとして手伝い、運営費のほとんどは寄付で賄われていた。

"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.

 メルボルン郊外にある子供ホスピス「ベリー・スペシャル・キッズ」で、脳腫瘍(しゅよう)の7歳の長女をみとった横山愛子さんに出会った。闘病中の子供を介護する家族の負担を軽減するため、スタッフが薬の世話や洗濯、食事の支度まで引き受けるだけでなく、精神的にも家族を支えてくれたという。

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.

 それは、ふとした気遣いに表れる。やり場のない気持ちをだれかに打ち明けたい時、それを察したかのようにスタッフから「コーヒーはいかが?」と声をかけられ、子供が眠ってからは芳香油で手をマッサージしてくれたという。

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.

 長女は、家族と過ごしたこの施設で、私が訪れた3カ月ほど前に旅立った。このホスピスでは死別後も、家族が精神的なケアを長期的に受けられる。視察当日、2歳下の次女は、スタッフや現地で見つけた友だちと遊び、笑顔を見せていた。横山さんは長女の体が動かなくなった後、次女が寂しがるのではないかと懸念していたが、その笑顔を見てほっとしたという。

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.

 英国で82年に生まれた子供ホスピスは、治療不可能な脳腫瘍の2歳女児を自宅に連れ帰った母親を気遣い、看護師でもある修道女がこの女児を一時預かったことで始まったとされる。専門家によると、死別を経験した家族の喪失感は、特に親が子供と別れた場合に大きくて長引くとされ、個人や家族で支えきれるものではないという。だが、日本に現在ある181のホスピスの中に、子供専門の施設はない。また、要介護認定された高齢者を一時的に施設で預かるショートステイサービスのような支援策も、24時間介護が必要な子供に対してはないに等しい。

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.

 日本におけるがんの死亡者は年間約33万人で全死亡者の3割を占める一方、15歳以下で小児がんを発病した患者数は約3000人。このうち末期を迎えてホスピスを必要とする子供の数は多いとは言えない。だが、そうした子供たちにも手を差し伸べることこそが、「子供が豊かに生きるために社会が責任を担う」と定めて日本も批准した「子どもの権利条約」(89年国連総会採択)の意味だと思う。

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.

 「生きる」キャンペーンではこれまで、重病の子供の回復を願う家族と医療関係者の熱意に触れてきた。小児がんの7割は治る時代となったが、それでも回復をあきらめなくてはならない家族もいる。治療を見込めない子供やその家族をどう支援するか。オーストラリアのホスピスを訪ねたことで、悲しみに直面する家族には、医療のほかに地域の手助けが不可欠だと強く感じた。

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)

「納棺」はかつて、地域の中で家族の手で執り行われていたという。地域での結びつきが希薄になったと言われて久しいが、今こそ地域でみとる新しい環境作りを模索する必要があるのではないか。

毎日新聞 2008122日 東京朝刊

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