‘It’s my life, it’s my death’: Meet the women who on Tuesday will apply to die

At one minute past six on Tuesday morning, Michael Hooper will log onto his computer and begin his mother’s application to die.

In the year since fiercely independent, deeply intelligent Jacque Hooper, 66, was diagnosed with motor neurone disease (MND), she has lost control over her body. Her mind is as sharp as ever, but she can’t feed herself, or speak. She is bedridden, in constant, terrible pain.

Michael Hooper with his mother Jacque. He will submit a voluntary assisted dying application for her as soon as the portal opens on Tuesday.

“You cannot prepare yourself for how fast it is,” she told the Herald, via a special keyboard. “You can say that it is a soul-destroying illness.”

Mother and son began discussing assisted dying almost a decade ago, before they knew about the disease lurking in wait. “She always said it’s a mercy we afford our pets, so it was a bit of a crime we didn’t extend it to our loved ones,” Hooper says.

On Tuesday morning, NSW will become the final state in Australia to allow voluntary assisted dying (VAD). NSW Health will begin taking applications via an online portal at 6am. The approval process is usually expected to take about three weeks but can be faster in exceptional circumstances.

“We will be asking for it to be expedited, under her express wishes,” says Hooper. “She’s definitely scared. I can see the fear in her eyes. But there’s a huge level of frustration. One of the worst things that could happen to her is being trapped in her own body.”

By Tuesday, about 150 NSW doctors will have been certified for the approval process. Two must confirm that a candidate has an advanced, terminal disease likely to kill them within six months, or 12 months in the case of a neurodegenerative disease such as MND.

The law requires a five-day wait between a patient’s first request – which is followed by the two consultations – and their final, written request.

If the application has been granted by a board, a doctor prescribes the drug. When, and if, the patient decides to have the prescription filled, an encrypted email is sent to a special pharmacy, which delivers the drug in a locked steel box.

The pharmacist will also explain how to use it. “It’s hard to take; it requires mixing and it’s not straightforward,” says Dr Wade Stedman, NSW Health’s Voluntary Assisted Dying clinical lead. Experience from other jurisdictions shows about a third of the people who have the medication at home never use it, he said.

“The patients find it a security blanket, it’s nice to have the control, or they are really sick,” says Stedman. Patients can take the medication themselves orally or ask to have it administered by a doctor intravenously. It’s not suicide under the law.

Janet Cohen, from the Mid-North Coast of NSW, who has terminal cancer, is a strong supporter of voluntary assisted dying laws.Credit: Lindsay Moller

Administering fatal medicine is a frontier for doctors, too, even if they have put themselves forward for the task by volunteering for training.

“Some might want to be involved in the first assessment and providing information; those same practitioners might not want to be the administering practitioner,” says Stedman. “Others might be comfortable being involved in the whole journey.”

Doctors have been invited to a “community of practice”, in which they can share their stories and support each other.

Stedman will go into the office at 6am on Tuesday to be on hand when the portal opens. He is expecting a large number of people to apply. “There’s already practitioners who have told us that there are patients who’ve asked them for it, and they’re waiting,” he said.

Judith, pictured sitting on a military vehicle near the Saudi Kuwait border before Saddam Hussein’s invasion of Kuwait City.

“[Support groups] Dying with Dignity and Go Gentle have also said there are people they’re aware of who are ready to start the process.”

In country NSW, a former army nurse, who wants to be known only by her first name, Judith, because her town is small and conservative, will also lodge her application next week. She has bladder cancer and was “happy and excited” about the new laws.

“I have a GP who’s VAD on-board, I’m very blessed and lucky, but it’s been a gruelling journey to come [back] to a Bible belt, conservative, pro-life [town],” she said. “My dying process is too important to be bullied by these sorts of people.

“I knew what my plans for myself were, a long time ago. It’s my body, it’s my life, it’s my death, I’ll choose from now on.”

Janet Cohen is also planning to access assisted dying at some point. She was diagnosed with cancer in 2013. Treatment has given her a good quality of life, but the disease is terminal, and progressing.

She has been given permission to access assisted dying in Switzerland and was relieved when NSW flagged its laws. “I believe in self-determination, and people having the agency, the control over their life to be able to have a good death,” she said.

For Michael Hooper, farewelling his mother will be difficult, but he will support her choices. “It’s a bit devastating, it’s losing my mum,” he said. “Ultimately, I just want her suffering to come to a conclusion.”

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