The will to live is indomitable

Mark Gosche talks to Carol yesterday during his regular visit to St Jones Hospital, Pakuranga. Picture / Dean Purcell

About this time three years ago, Labour MP Mark Gosche had no reason to know that the life or death of Florida woman Terri Schiavo would have any interest to him.

He was a Cabinet minister at the time. He and his wife, Carol, arrived at the Labour Party pre-election congress in Wellington confident in their political and personal futures.

Mr Gosche's father had died six weeks earlier after a 14-year fight with cancer. But the couple were excited about their first grandchild, born two weeks earlier. And Labour was headed for certain re-election.

The Gosches had married young and were devoted. Carol was hugely popular in Labour, union, women's and schooling circles, a real character, the sort of outgoing person who could and did engage with anyone, a perfect complement to her more laconic and shyer husband.

She was a chronic asthmatic and had high blood pressure, but nothing that would give any warning of the shattering events just hours ahead.

At their Wellington home in the middle of night, Carol suffered a brain haemorrhage and was rushed to intensive care at Wellington Hospital, where she lay in a coma on life-support that helped her to breathe.

Medical specialists twice asked the distraught family to prepare for Carol's death. But twice she climbed back from the abyss, so the family did not have to face the prospect of deciding to turn off the breath ventilator - a decision that confronts many New Zealand families.

"It is a hugely different step to be asked to turn a ventilator off than to be asked to take a feeding tube out from somebody who has been alive for 15 years," said Mr Gosche, referring to the brain-damaged Terri Schiavo, who died 13 days after a court upheld her husband's wish to have her feeding tube removed.

"When you sit with somebody who's dying and watch their will to live keeping them alive and nothing else is keeping them alive, or when you sit at an ICU watching someone who is supposedly going to die come through it, purely through their will to live, it changes your mind about what their life is afterwards, even with the most severe disability."

Mr Gosche, who stepped down from the Cabinet, will not be able to make it to Labour's pre-election congress at Wellington this weekend. Carol has begun to come home at weekends from the private hospital near their Pakuranga home.

She has limited movement and is confined to a bed or wheelchair. Until about a year ago she was dependent for sustenance on a feeding tube, like large numbers of people throughout New Zealand who had lost their ability to swallow.

She cannot speak but responds to her husband by nodding and shaking her head. Such improvements are not obvious to all.

"If people looked at her they would think, 'This a person who is not here. She is not somebody who can make decisions for herself', and that's how people talk to her. A lot of people talk to her as though she is an idiot, and she is not."

Mr Gosche agreed to talk about some of the issues thrown up for New Zealand by the Schiavo case, and in light of his own experience.

"I actually talked about it with Carol and said did she think the woman should have her feeding tube removed. She shook her head."

What he wouldn't do was pass judgment about who was right or wrong: Terri Schiavo's husband, Michael, who argued for his wife's right to die, or her parents, who lost the legal battle for guardianship and the right to keep feeding her.

Mr Gosche said the people who had vilified or supported Michael Schiavo had no idea what he had gone through, "absolutely no idea."

"For four years that husband had tried everything he could to get his wife better again, as if she was going to make a recovery and come back to the person she was."

But at a point he decided it wasn't going to happen, and he then became an advocate for the right to die.

But Mr Gosche points to an important difference in expectation.

"If there is an acceptance that the person is going to be disabled for the rest of their life but let's do everything we can to aid a recovery of sorts, you would probably go into it with a different perspective."

He said addressing such issues will become more important in New Zealand as advances in modern medicine kept alive people who 30 years ago would have died.

"What we have to start to confront as a result of something like the Terri Schiavo case is what does that mean to us as a society, because the costs are going to have to be met in financial and human terms.

"You're going to have situations where the person definitely is alive and is severely disabled, but has got a will to live and have got a right, therefore, to be well looked after."

Mr Gosche said that from his experience, New Zealanders did not cope with disability easily.

"But if we weren't so frightened of it, these types of moral and ethical decisions might get easier to make.

"We don't think that maybe the people with a disability are enjoying life as best as is able. We look through able-bodied eyes and say, 'Their life must be bloody terrible'. You've got to put yourself in the situation of the Carols of this world who have fought to stay alive."

New Zealand needed to start discussing issues such as living wills without rushing in and saying it needed to pass laws, and without focusing on euthanasia and the right to die. "You've got to go a lot deeper to the rights of the people with the disability because it is just too easy to take the quick way out and say we should have a rule that allows people to pull feeding tubes out, to remove the basic right which is to be fed.

"The rights of the person with a disability are very quickly subsumed by the rest of our attitudes: 'I wouldn't want to look like that so let's make it easier for the people to kill themselves or be killed'.

"I want to see a debate that says a lot of people want to live - and Carol is one of them."