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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 she might be bored, and she thought she might be lonely, and she thought she might simply have run out of good times and interest. 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.

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, using an approach most likely to be passed in the Parliament – where [the legislation] 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.’

Brief burst of legality

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.

Participation voluntary

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 (though in my view this is likely to 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.

Concerns over danger

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 legislation has been written, but that it exists 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. These opinions deserve respect – they are deeply and honestly held.

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 for clinicians

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 an easier impending death. 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.

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#IHMayDay17
#IHMayDay18
#LoveRural 2014
Croakey Conference News Service 2013 – 2019
2013 conferences
Australian Centre for Health Services Innovation Forum 2013
Australian Health Promotion Association Conference 2013
Closing the Credibility Gap 2013
CRANAplus Conference 2013
FASD Conference 2013
Health Workforce Australia 2013
International Health Literacy Network Conference 2013
NACCHO Summit 2013
National Rural Health Conference 2013
Oceania EcoHealth Symposium 2013
PHAA conference 2013
2014 conferences
#IPCHIV14
AIDA Conference 2014
Congress Lowitja 2014
CRANAplus conference 2014
Cultural Solutions - Healing Foundation forum 2014
Lowitja Institute Continuous Quality Improvement conference 2014
National Suicide Prevention Conference 2014
Racism and children/youth health symposium 2014
Rural & Remote Health Scientific Symposium 2014
2015 conferences
#CPHCEforum
#CRANAplus15
#HSR15
#NRHC15
#OTCC15
Population Health Congress 2015
2016 conferences
#AHHAsim16
#AHMRC16
#ANROWS2016
#ATSISPEP
#AusCanIndigenousWellness
#cphce2016
#CPHCEforum16
#CRANAplus2016
#IAMRA2016
#LowitjaConf2016
#PreventObesity16
#TowardsRecovery
#VMIAC16
#WearablesCEH
#WICC2016
2017 conferences
#17APCC
#ACEM17
#AIDAconf2017
#BTH20
#CATSINaM17
#ClimateHealthStrategy
#IAHAConf17
#IDS17
#LBQWHC17
#LivingOurWay
#OKtoAskAu
#OTCC2017
#ResearchTranslation17
#TheMHS2017
#VMIACConf17
#WCPH2017
Australian Palliative Care Conference
2018 conferences
#6rrhss
#ACEM18
#AHPA2018
#ATSISPC18
#CPHCE
#MHED18