A scan might have found the cancer now killing Daniel van Roo. Instead his doctor gave him 50 STI tests, which van Roo believes was because he is gay.If I hadn’t taken action and if I hadn’t seen a doctor then, you know, then where I am is just where I am. But because I did do those things, I am probably going to be upset about it when I am laying in the hospital bed at the end.
Victoria’s assisted dying legislation
In 2017, when she was 56 years old, Dr Philippa Ramsay started falling down stairs. She could no longer walk steadily. Her hand–eye co-ordination became so bad she couldn’t lift a cup of tea to her mouth with confidence. The bank rejected her signature – so she had to go in and sign for some transactions in person. Still the tellers didn’t believe she was who she said she was.
An MRI revealed she had a brain tumour. It was inoperable.
Dr Ramsay is an obstetrician-gynaecologist. Much of her career has been dedicated to helping new life come into being. She has three daughters of her own. Nine years ago, she had a double mastectomy and survived the trial of breast cancer. The brain tumour diagnosis came two years ago.
“I’ve sort of faced the prospect of death twice, already. So that’s why I feel very clear about what I want,” she says. “I don’t want to be the person who doesn’t recognise their family and who can’t hold a conversation. That’s not who I am. I don’t want to be the blob on the bed.”
A few months after her diagnosis, the Victorian parliament passed the Voluntary Assisted Dying Act, the first state to do so, after more than 100 hours of tense debate. These laws came into effect on Wednesday this week. Terminally ill Victorians may now request from their doctors access to a combination of drugs that will allow them to end their own lives.
“I was very pleased that the assisted dying laws had passed [in Victoria],” says Ramsay. “I still feel they don’t go far enough because of the fact that the patient has to be of sound mind. My reservation with that is that it will be when I’m not of sound mind that I’ll want voluntary euthanasia.
“Everyone knows my position on this and my biggest fear is that when the time comes I’ll be incapable of taking the drug because of ill health or dementia when it’s clearly something I’ve wanted for decades.”
Because Ramsay lives in New South Wales, she won’t be able to access the Andrews government dispensation legally – the law requires patients to be Victorian residents for at least 12 months before they can apply. When the time comes, she instead plans to obtain and take Nembutal – a lethal barbiturate that is promoted as the “peaceful pill” by the euthanasia movement – a decision she says is about dignity and autonomy.
She resolved to take this course long before her diagnoses, after watching her parents die from cancer. Her mother passed away in palliative care; her father at home. They experienced chilling declines – mentally and physically – before their deaths. Ramsay says she’s held the same views on euthanasia for 20 years. She’s filled out an advanced directive every five years with her local doctor and her local hospital.
Victorian Premier Daniel Andrews has called his government’s Voluntary Assisted Dying Act the most conservative of its kind in the world. The lethal drug used in assisted dying will be dispensed around the state from just one hospital, The Alfred. And patients need to fit a stringent set of eligibility criteria in order to access it.
In order to qualify, they must be diagnosed with a terminal illness and expected to die within six months – or within a year in the case of a neurodegenerative condition. Throughout the entire process, they must retain a decision-making capacity. They must be at least 18 years old and, as stated earlier, a Victorian resident for at least a year. And they must be suffering in a way that cannot be adequately relieved.
The patient must make three separate requests for assistance in dying – first consulting with two medical practitioners, then making a written request signed by two witnesses and a final request to the first doctor consulted. The drugs will be self-administered. The patient has the right to change their mind until the very end. And doctors have a choice, as well – they can “conscientiously object” to engage in assisted dying. Many Catholic health service providers have opted out of providing assisted dying support to their patients, which will affect some 2800 hospital beds and 3200 residential aged care beds across the state.
Dr Rodney Syme is a retired urologist and former president of the group Dying With Dignity Victoria. He says Victoria’s assisted dying laws have “broken the ice” for euthanasia in Australian politics and is hopeful other states will soon follow.
He warns, however, that the Victorian legislation is complex. He is particularly concerned that two general practitioners are not enough to approve a patient’s request. Under the government’s interpretation of the act, although one approving doctor can be a GP, the other has to be a specialist in the patient’s terminal illness.
“That has serious implications because it immediately narrows the number of doctors who would be available to help patients,” says Syme. “While these people [specialists] do exist in Melbourne, if you live in a rural or regional area it’s going to be extraordinarily difficult to get access to this sort of expertise … If the government continues with this policy, I think it’s going to be difficult for people to get the two signatures.”
He also points to the fact doctors are not allowed to raise the question of voluntary assisted dying with their patients. This provision is intended to ensure doctors won’t try to persuade a patient into assisted dying, a common fear among its critics and sceptics.
“No doctor would ever entertain wanting to persuade someone,” says Syme. “But what it means is that if you, for example, were told you had terminal brain cancer by me, and you asked me, ‘What are my options?’, according to the government’s interpretation I can’t mention voluntary assisted dying to you. You have to use those words to me. Now that’s contrary to all medical ethics that I’ve ever been trained in – it’s my duty as a doctor to make sure you’re fully informed.”
There remains vehement opposition to voluntary assisted dying. On Tuesday night, the group Pro-Life Victoria protested against the legislation on the steps of Parliament House in Melbourne. Four Catholic bishops, including Archbishop of Melbourne Peter Comensoli, penned a letter saying: “We cannot co-operate with the facilitation of suicide, even when it seems motivated by empathy or kindness.”
Philippa Ramsay thinks that as long as the laws are for people who have a terminal illness, euthanasia should not be confused with suicide or “killing”.
“It’s not the same thing at all,” she says. “It’s not a transient decision; it’s not something that can be reversed.
“I’ve got two plans,” she says. “There’s plan A, which is staying alive. And I’m doing everything I can do to fulfil that. I’m following the doctor’s instructions. I’ve had chemotherapy and radiotherapy and I’m on immunomodulator drugs now. I eat really healthily and I exercise every day.
“But plan B is having a good death,” she says, referring to the Greek root of the word euthanasia.
The question of what makes a good death is complicated and intensely intimate. At the same time, it is perhaps the most universal.
When she’s asked about the prospect of going out on her own terms, Ramsay says: “It makes me feel happy. It makes me feel relaxed, that if it comes to plan B, I’ll be able to do it the best way possible … I’ve completed all their treatments. And so, I’ve done my best, you know? If despite all that I don’t live very long – and I don’t know how long I will live – well, then, I want to just go to plan B and make sure I don’t have a long and humiliating and painful death.
“I guess I’ve observed a lot of death and dying through my profession. So, I’m not scared of dying. I’ve made a lot of preparations for death. I’ve already chosen the funeral plot. I’ve chosen the music for the memorial service.”
Danny Gokey’s “I Will Not Say Goodbye”, she says, and Sarah Brightman’s version of “Time to Say Goodbye”.
This article was first published in the print edition of The Saturday Paper on Jun 22, 2019 as "Exit strategies".
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