Voluntary euthanasia: the power of the consumer voice

By Mark Ragg. This article was first published by Croakey on 25 June 2019

Ragg & Co > Commentary > Voluntary euthanasia: the power of the consumer voice

A couple of decades ago, I was working at The Australian and wrote a piece arguing in favour of voluntary euthanasia. People should have the right to decide when to end their life, I argued, as long as they were capable of making a rational decision, and as long as there was no pressure on them.

A reader who knew I was a doctor rang and said she wanted to talk it through. We met for a coffee. She was in her 50s and wanted to find a doctor who would help her die when the time came. She was healthy and had no issues to deal with now, but was single and lived alone, and had no close family. She was independent, and happy with her life, and happy with her lot. But she believed that ageing alone would be hard, and she might come to a time when she didn’t want to live any longer. She thought he might be bored, and she thought she might be lonely, and she thought she might simply have run out of good times. Would I be her doctor?

I wouldn’t, and couldn’t, as I wasn’t a GP and didn’t have a stable practice. Emergency departments didn’t seem the right setting to have occasional deep conversations. But I pointed her in the direction of a few good people to check out, and off she went.

Victorian legislation’s complex development process

The coming into effect of legislation supporting voluntary euthanasia in limited circumstances in Victoria last week brought that woman to mind. The legislation had been through a complex development process starting with an inquiry by the Victorian Parliamentary Legal and Social Issues Committee into the need for Victorians to make informed decisions regarding the end of their lives. The committee represented the major parties and the cross-benches.

Alison Verhoeven, CEO of the Australian Healthcare and Hospitals Association, says: ‘The Committee sought input from all sectors of the community and received over 1,000 submissions before recommending legislating for voluntary assisted dying (VAD), using an approach most likely to be passed in the Parliament – where VAD would only apply to people in the end stages of terminal illness, and with numerous safeguards and respect for conscientious objections.

‘The Victorian Government then formed an innovative seven-person Multidisciplinary Advisory Panel to progress the work, supported by Department of Health and Human Services staff. The legislation was never in question, only the shape of it with regard to eligibility, the request and assessment process, and oversight and governance. Consultation and listening to concerns were key, as well as catering for every detail.’

After the concept had passed through a parliamentary inquiry and a ministerial advisory panel. It was passed in the lower house 47 to 37, and subsequently in the upper house with amendments. The implementation was allowed 18 months, with the legislation to come into effect last week on 19 June. Plenty of time was taken to understand the nuances.

Briefly legal

Euthanasia was briefly legal in 1996 and 1997 in the Northern Territory, until that legislation was overturned by the Federal Parliament. There have been previous attempts to enact legislation allowing voluntary euthanasia in New South Wales, Tasmania and South Australia. But in 2017, the Victorians got it through.

Ms Verhoeven believes the new legislation could have developed only in an atmosphere of rising consumer demands and expectations.

‘The key to legislative change in Victoria was the approach taken in developing the new laws. It was citizen-driven and inclusive, combining evidence, science and social action,’ she says.

The Victorian Government has taken time and effort to explain the law and its application. Its website explains the law like this.

Health services are able to participate in voluntary euthanasia, if they wish, but are also free to not take part. They’re under no obligation to refer patients requesting voluntary euthanasia, but shouldn’t inhibit it. But all health services are advised to develop policies on how they deal with patients and clients who ask for either support or information.

All pharmacy services are provided at the moment through one pharmacy, although it is reasonable to expect that this will change over time.

People are able to be prescribed life-ending medication if they:

  • have an advanced disease that is expected to cause death within six months (or within 12 months for neurodegenerative diseases like motor neurone disease) and that is causing the person unacceptable suffering
  • are able to make a decision about voluntary assisted dying and communicate it to their doctor
  • are aged 18 or over
  • have been living in Victoria for at least 12 months
  • an Australian citizen or permanent resident.

They must ask their doctor for voluntary euthanasia on three separate occasions, including once in writing, and be seen by two doctors, who agree they meet the criteria. This process must take at least 10 days, unless the person is likely to die in that time.

According to the legislation, only the person who wants to die can ask the health professional about it. Relatives, friends and carers can’t raise the issue. Nor can doctors or nurses.

People with a mental health problem or with a disability can seek voluntary euthanasia, like anybody else, but not on their basis of their mental health problem or disability.

Many concerned

While the legislation is broadly popular, there are still many concerned that the laws are dangerous, with protests outside parliament. Most opponents don’t criticise they way the laws have been written, but that they exist at all.

Some are concerned that people who feel they are a burden to others will feel the pressure to die, now that voluntary euthanasia is a choice. Some feel that with elder abuse so common, this is another weapon. Some with religious perspectives feel it is playing god.

But the reaction, in general, has been muted considering the enormity of the change. But it’s brought an interesting approach from Palliative Care Australia. Palliative care clinicians and euthanasia advocates have often been locked, unnecessarily, in opposition. Euthanasia advocates have generally supported the right to palliative care, and the beefing up of the palliative care sector, but for too many years some palliative care advocates opposed having euthanasia as an option. Some took the position that if only palliative care was expanded, there would be no need for euthanasia – a view not supported by the minority of people who have found palliative care ineffective.

Guiding principles

But the peak body, Palliative Care Australia, recently produced what it called a set of ‘guiding principles’ for clinicians. These are that:

  • people living with a life-limiting illness are supported and respected whether or not they choose to explore or access voluntary assisted dying.
  • people exploring voluntary assisted dying will not be abandoned
  • respectful and professional behaviour towards colleagues and co-workers regardless of their views on voluntary assisted dying
  • effective communication is an important part of quality care
  • ongoing development of knowledge, skill and confidence is required to provide competent and safe care to people living with a life-limiting illness
  • self-care practice is a shared responsibility between individuals, colleagues and organisations
  • continue to learn from evidence and evolving practice to drive quality improvement in voluntary assisted dying

It’s a rapprochement between two sides that should never have been two sides.

But to go back to the woman from the start of this article. The Victorian legislation doesn’t satisfy people whose approach to euthanasia is based on agency, rather than pain relief. Will they accept the situation as it is? Or push for more? Will other states follow the lead of Victoria? Will others be more open, and allow people the right to an easy death without the need for a life-threatening medical condition? Time will tell.

By Mark Ragg. This article was first published by Croakey on 25 June 2019

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Mark Ragg
Location: Sydney
Description: Writer, editor, researcher, health. Director at Ragg & Co Honorary Fellow Indigenous health @UTS_GSH Editor @CroakeyNews Working for equity and social justice
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