醫生告訴你，你那83歲的爸爸有心臟病，要救他只有換心，換心手術的成功率約有90%，手術成功以後終生都得吃免疫抑制劑，抵抗力會很差，可能常常因為感染住院，生活品質也不好。老爸爸一聽，想想自己年紀已大，不想老骨頭再受折磨，決定什麼治療都不做；而你，也不希望老爸剩下的日子不好受，就這麼讓他安度晚年。

可是，如果生病的不是老爸爸，而是你只有13歲大的女兒呢？

這是住在離倫敦西北方230公里遠的小鎮Marden的一對父母的難題。他們的女兒Hannah Jones，在4歲的時候被診斷患有急性骨髓性白血病（acute myeloid leukemia, AML），因為化療造成心臟病變，心臟功能只有正常人的10%。

Hannah把醫院當成家，這8年來經歷了無數的化療和手術，今年年初才裝了人工心臟，但是醫生告訴他們，Hannah的心臟撐不久，要延長生命的方法只有一個：心臟移植。

Hannah拒絕，而她的父母支持她。

由於英國的法律認定16歲以下的青少年為無行為能力者，不能為自己的決定負責，醫院將Hannah的案例上報兒童福利單位，希望強制Hannah接受手術，而社福人員跟Hannah談過後，認為她了解不作手術得接受的風險，判定Hannah勝訴，可以回家和家人團圓。

Hannah和母親接受媒體訪問的時候，沉穩又堅定地說：

“I just decided that there were too many risks and even if I took it there might be a bad outcome afterwards. I have been in hospital too much.”

目前Jones一家人正在向各方尋求補助，希望在今年12月能帶Hannah到迪士尼世界一遊。

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大致掃了一下網路上的新聞，大部分的人都說這小女生很勇敢。

但我覺得，認同她決定的父母更勇敢──活著的人才是承受最後結果的人。

也許是明年，也許是後年，更也許是3年、4年……數年後，Jones夫婦的聖誕夜，會多一個天使在天上看著他們，而不是跟著他們一起過。

他們知道這個可能性，但還是告訴Hannah：「妳不想開刀，那就不開了吧！」

追求一線生機很容易，想開並放下很難，不一定想得開也不一定肯放手但還是得放手，是又痛又難。

希望Hannah不再住院後能快快樂樂的生活，也希望Jones一家人到最後一刻，能沒有遺憾。

相關連結：

My fight for right to die at home

Teenager who won right to die: 'I have had too much trauma'

A family who lost their daughter to leukaemia have said they support teenager Hannah Jones' right to die with dignity

A story both heartbreaking and unsettling

In whose best interests?

Why heart pumps could kill of the transplant

Seattle Times

Wednesday, November 12, 2008 - Page updated at 12:00 AM

Permission to reprint or copy this article or photo, other than personal use, must be obtained from The Seattle Times. Call 206-464-3113 or e-mail resale@seattletimes.com with your request.

Teen's choice: no heart transplant

By JENNIFER QUINN

The Associated Press

LONDON — Hannah Jones, 13, is not afraid of dying — she is afraid of spending her remaining days in a hospital bed.

In a case that raises a host of medical and ethical issues, the British teenager from a small town northwest of London has won a battle to refuse a heart-transplant operation.

That decision by British medical authorities has ignited a debate over whether children should have the right to refuse potentially lifesaving medical treatments or whether health authorities have an obligation to intervene.

Hannah, from Marden, 145 miles from London, was diagnosed with leukemia at age 4. Doctors later found a heart defect. In eight years, she has had chemotherapy and nearly a dozen operations.

"I've been in hospital too much — I've had too much trauma," she told Sky News on Tuesday.

Hannah's story surfaced when her parents complained about medical officials who threatened to force her into a hospital.

A social worker was then sent to interview the teenager about her refusal to have a heart transplant to treat her cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails. The social worker backed Hannah's decision.

Hospital officials said it is standard procedure to make sure both the child and the parents understand the consequences of any decision.

"Clearly, the welfare of the child is paramount," said Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. "No one can be forced to have a heart transplant."

In Britain, children younger than 16 aren't automatically considered legally competent to make decisions about their health care.

According to the Department of Health, when a child is considered competent and refuses treatment, his or her decision will be respected. When a consensus can't be reached, the patient can be overruled by either parents or guardians, or in more unusual circumstances, by the courts.

Heart transplants are risky operations for any patient. Transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines sometimes have side effects making the body more susceptible to dangerous infections.

"I just decided there were too many risks, and even if I took it there might be a bad outcome," Hannah said.

Copyright © 2008 The Seattle Times Company