Organ donations from brain-dead patient highlights families' tough decisions, Japan

The Mainichi Daily News

Last year a woman in Hokkaido agreed to donate the organs of her brain-dead mother even though there was no written evidence of her mother's will. In a recent interview with the Mainichi, the woman opened up on the tough decisions faced by families of brain-dead patients.

"Having to make the decision to donate her organs when I was constantly thinking about her condition as a family member was tough. But that's exactly why families need to be presented with all the options and be given a chance to consider them," the 27-year-old says.

Recent revisions to the Organ Transplantation Law made donations of the organs of brain-dead patients possible with approval from the patient's family alone. Since the revisions came into effect last year, organs of 30 brain-dead patients have been donated as of Feb. 8. With more families opting for donation, questions over how to help them cope with conflict and difficult decisions are also arising.

The 27-year-old's mother suffered a serious brain hemorrhage at night and underwent an operation, but her condition only worsened. The daughter rushed from her home in the Kanto region to the hospital after receiving news from her sister, but her mother did not regain consciousness. Several days later the doctor in charge of her had bad news.

"We suspect she's brain dead," the doctor reported.

Family members asked if there was any way to save her. They wanted to help her even if she got only 1 percent better, or even 0.1 percent.

However, images showed that the mother's brain was swollen and her brain-wave graph was flat. The family had no option but to accept the diagnosis.

Later, the doctor presented the family with the option of donating the mother's organs. The 27-year-old, one of her sisters and her father were against the idea. But her other sister had a different view.

"Recently when we were watching a TV program about organ transplantation, mom said, 'If there was someone who would be helped by it, I would donate my organs,'" the daughter confided.

The question over whether to go ahead with donating organs sparked discord among family members. The father considered brain death to be the death of a person. But his daughters saw their mother's heart beating and her changing blood pressure on the hospital monitors.

"Her heart is still beating and her body is warm. Can you call that death?" "Is it all right to put the scalpel into Mom's body when she's trying so hard?" the daughters asked.

The doctor then started to give the family options, letting them know that they could stop him at any time if they didn't want to listen. He told them about other families that had decided to go ahead with donating organs and those that had decided not to, and answered all the family's questions, no matter how trivial they were. In the end, the family reached a joint conclusion:

"It's in line with mom's wishes."

Before the organs were removed, the hospital suggested the family do something for the mother, even though she lay unconscious. Her daughters responded by decorating her fingernails with nail polish, something her mother had not been able to do much while working.

Nearly two weeks after the mother was hospitalized, she was legally declared brain dead. The last time that the family could feel their mother's warmth had arrived. As she was taken away to have her organs removed, the teary-eyed 27-year-old gave her parting words.

"This is really goodbye. Thank you. See you."

Several months later, the 27-year-old found out from the Japan Organ Transplant Network that a patient who received an organ from her mother had recovered and returned to life in society. She recalls her gladness at having agreed to the donation. At the same time she asks herself: "What if we hadn't known what our mother wanted?"

The 27-year-old can't forget the feeling of touching the sewn-up stomach of her mother after she returned from the operation room.

"My mother's will certainly supported my choice," she says. "If we hadn't known what she wanted, I think we would have been really torn over the decision."

脳死移植：臓器提供、悩んだ家族　「脳死情報、全ての選択肢を」

　◇「助かる人いるなら…」元気だった母の言葉支えに

　北海道で昨年、生前の書面による意思表示がない５０代女性の脳死臓器提供を承諾した長女（２７）が、毎日新聞の取材に応じた。「家族の容体のことで頭がいっぱいの時、臓器提供を決断しなければならないのは、酷なこと。しかし、だからこそ家族には全ての選択肢を示し、検討する機会が必要だ」。臓器移植法の改正で実現した家族承諾による脳死臓器提供は昨年の改正法全面施行後、８日現在計３０例に上る。極限状態での葛藤と決断に直面する家族が増え続ける中、どのように心理的な負担を軽減していくかが大きな課題となっている。【永山悦子、藤野基文】

　深夜、重症のくも膜下出血を起こした母は、手術を受けたが、悪化の一途をたどった。既に結婚し、関東地方へ引っ越していた長女は、妹からの連絡を受けて駆けつけたが、母の意識は戻らず、入院の数日後、主治医から「脳死が疑われる」と告げられた。

　「１％でも０・１％でも助ける方法はないのか」。家族は主治医にそうすがったが、画像で母の脳は腫れ上がり、脳波のグラフも平ら。家族も受け入れるしかなかった。

　その後、主治医から「臓器提供」という選択肢が示された。父と長女、三女には思いも寄らない言葉だったが、次女は違った。「最近、臓器移植のテレビを見たとき、お母さんが『助かる人がいるなら臓器提供をしてもいい』と話していた」

　そこから家族の葛藤が始まった。父は「脳死は人の死だ」と考えていた。だが、病室内のモニターに映る母の脈拍や血圧の変化を見た娘たちは「心臓は動いているし、体は温かい。それって死といえるのか」「お母さんはこんなに頑張っているのに、体にメスを入れ、中身をとってしまっていいのか」と悩んだ。

　主治医らは「嫌になったら、すぐに話すのをやめる」と前置きしたうえで、脳死の説明や、以前に臓器提供した家族、逆に拒否した家族の様子を話し、どんなささいな質問にも答えた。家族が出した結論は「お母さんの意思に沿う」だった。

　母の意識が戻ることはなかったが、病院側から「何でもやってあげましょう」と背中を押され、姉妹で仕事のためなかなか付けられなかったマニキュアで指先を彩った。

　入院から２週間近く、母は法的に脳死と判定された。母のぬくもりに触れられるのはもう最後。長女は、臓器摘出の手術へ向かう母に「これが本当のさよなら。ありがとう。いってらっしゃい」と声をかけ、涙があふれた。

　あれから数カ月。日本臓器移植ネットワークから、移植を受けた患者が回復し、社会復帰した人もいると聞いた。長女は「承諾してよかった」と思う。一方、「もし母の意思が分からなかったら」とも思う。手術室から帰ってきた母のおなかをなでた時、針で縫われた大きな痕に触れた感触が忘れられない。「母の意思が決断の支えだったのは確か。分からなかったら、すごく悩んだだろうと思う」

　◇支える人材育成が重要

　本人の書面による意思表示がなく、家族が脳死臓器提供をするかどうか決断する例が増えている。年間提供数は過去１３件（０７、０８年）が最多だったが、改正法施行後の家族承諾例の急増で昨年は３２件と大幅に伸びた。どんな家族でも直面しうる問題でもある。

　臓器提供者の家族の心情を把握する厚生労働省作業班で班長を務めた経験を持つ吉川武彦・中部学院大教授は「臓器提供の場面は、医療側は臓器を得るため時間が限られる一方、家族は納得するため十分な時間が必要だ」と指摘。「家族ができるだけ後悔のない決断をするためには、主治医、移植ネットのコーディネーターが、個々の家族に寄り添った説明、支援をすることが求められる。特に、改正法で本人の意思が明確ではない中、決断を迫られる家族が増えており、支える人材育成が重要になっている」と話す。