Opposition to euthanasia call

A new group representing disabled people says they feel threatened and unvalued by growing calls to legalise euthanasia and assisted suicide.

The launch of Not Dead Yet Aotearoa coincides with the nationwide tour of a Dutch doctor and euthanasia exponent.

Rob Jonquiere of the World Federation of Right to Die Societies is touring the country as a guest of the Voluntary Euthanasia Society.

He is keen to debunk misconceptions about voluntary euthanasia and physician-assisted suicide, which he said was carefully managed in the Netherlands.

"We have proven that legalising a practice which is happening anyway makes it not easier to do, certainly does not cause misuse or abuse as everybody is afraid of."

But the convenor of Not Dead Yet Aotearoa, Wendi Wicks, is not reassured, and said talk about ending suffering fits the stereotype many people also had about disabled people, putting them squarely under the spotlight.

"We feel threatened. We feel threatened by the lack of value to our lives, the assumption that we would be happily, choose to be dead. We'd rather have choices in our living before people start to talk about giving us choices to die."

Ms Wicks said disabled people, who make up 24 percent of the population, were not "getting decent choices in our living" currently.

"We're seen too much in medical and deficit terms, with an undue emphasis on the unbearable pain and suffering associated with disability."

She said disabled people knew all about unbearable pain, but many also saw a life beyond that.

"A lot of us have known it, learned to live with it, learned to manage it and we haven't got to the point of saying, 'I'd rather be dead than disabled', because we have come to there and discovered that life is still good."

She said you can adjust, as she has done following treatment for a brain tumour.

"You can live, you can adjust, you can manage a whole pile more than you think you can."

Wendi Wicks said Not Dead Yet Aotearoa was not religiously based. She said it was concerned the debate about euthanasia had been "all one sided so far" with the voice of disabled people missing, whereas it was the group most affected.

A Wellington couple, Margaret and Geoff Malcolm, said they had no firm view on voluntary euthanasia, but found the four months they spent caring for their terminally ill daughter, Jayne, extremely precious.

They said Jayne, 42, was diagnosed with six brain tumours, one at least very large, and that Jayne opted in 2012 not to have risky brain surgery for a biopsy that might indicate what could be done.

Margaret Malcolm said even the doctors were split on whether surgery should be attempted.

"There was a split decision between the doctors whether they should or shouldn't. Half of them said no it's not going to do any good, it could make her worse. The other half said let's give it a go."

Jayne died at home four months after being discharged from hospital in mid-September to home where she had round-the-clock care from her parents, closely supported by the hospice, the district health board and others in the community.

Mrs Malcolm said Jayne did not suffer, right up until the end.

"She normally woke up about quarter to nine, nine o'clock for breakfast and would call out, 'I want my breakfast please'. Well, she didn't wake up, at quarter to ten, she passed away."

Mr Malcolm said it was a positive experience in a negative environment.

It was the kind of "wrap-around" care that palliative care specialists strived for, said Sinead Donnelly of the Australia and New Zealand Society of Palliative Medicine.

She said voluntary euthanasia and physician-assisted suicide were backward steps.

"Doctors don't want to participate. Our role is to care and to cure if we can occasionally and to care always and never to abandon the patient, and always to stand with them throughout the suffering no matter what the suffering is. And [to] go to the ends ... it's a vocation, that's what we're trained to do, it's for service. So that's the principle reason [why] we're opposed."

The Voluntary Euthanasia Society has launched a petition urging Parliament to debate a law change allowing doctors to assist terminally ill patients end their lives.

Labour MP, Iain Lees-Galloway, who took over proposed legislation on the topic from former MP Maryan Street, said it was needed.

"It's an excellent way to get the issue in front of parliamentarians in a fashion that doesn't align it with any one political party, and actually demonstrates that it's an issue that the public wants us to consider."

The society said it hoped the petition would be heard by the health select committee.