Navigating assisted dying in Victoria

Tuesday, Nov 13, 2018, 12:08 AM | Source: Pursuit

Carolyn Johnston, Michelle Taylor-Sands, Christopher Gyngell, Paula O'Brien

Victoria is the first state in Australia to legalise voluntary assisted dying.

The Premier, Daniel Andrews, has described the law that comes into effect on 19 June next year as “giving Victorians with a terminal illness the compassion and dignity they deserve at the end of their lives”.

When voluntary assisted dying becomes legal in Victoria next year, managing changes in doctor-patient relationships will be an important area to get right. Picture: Getty Images

It is believed about 150 people a year in Victoria will choose to die this way, but the legislation raises ethical, legal and policy challenges. Ensuring equality of access across healthcare institutions, while allowing conscientious objection by healthcare practitioners, is critical.

Managing changes in doctor-patient relationships and promoting autonomy and informed consent are also key.

Accessing Voluntary Assisted Dying

The Voluntary Assisted Dying Act 2017 (Vic) permits a doctor to enable a patient to die, subject to strict eligibility criteria and safeguards.

A doctor providing a substance for a patient to use to end their life seems counterintuitive. But if the person is suffering unbearably from an incurable illness or disease, it may be appropriate for them to support that person’s choice to die.

Only people living in Victoria for the past 12 months who are Australian citizens, or have permanent residency, are eligible. The Act applies to competent adults aged 18 years or more who have a disease or condition that is advanced and progressive and expected to cause death within six months – or 12 months for neurodegenerative conditions like Motor Neurone Disease or Huntingdon disease.

Doctors need to inform patients about treatment options, including palliative care, when a patient initiates a discussion about voluntary assisted dying. Picture: Getty Images

People must also experience suffering that cannot be relieved in a manner they find tolerable.

A person is considered to have decision-making capacity if they can understand, retain, use and communicate information regarding their decision about voluntary assisted dying. A potential limitation for some people is their condition may affect their decision-making capacity before their expected death.

The strict eligibility criteria ensure a decision is voluntary, but do mean some people will be unable to access voluntary assisted dying.

Avoiding undue influence

A healthcare practitioner can’t raise voluntary assisted dying – the patient must initiate the discussion. But the Victorian Legislative Council’s Inquiry into End of Life Choices identified a lack of awareness and understanding in the community about palliative care and advance care planning.

So, waiting for patients to request this new option may affect access, especially for less-advantaged groups and people with lower health literacy. Being unaware of it may also impact a patient’s ability to provide fully informed consent to other medical procedures.

Understanding the decision

A person makes a first request for voluntary assisted dying to a doctor, most likely their general practitioner or specialist. This doctor – the ‘coordinating medical practitioner’ – assesses whether they meet the eligibility criteria.

They then inform the patient about treatment options including palliative care, the outcome of taking the drug and changing their mind.

Two doctors will assess whether a patient meets the eligibility criteria for voluntary assisted dying. Picture: Getty Images

This doctor then refers the patient to another doctor – the ‘consulting medical practitioner’ – who again checks eligibility criteria and provides information to the patient.

If these hurdles are all passed, a written declaration is made for voluntary assisted dying. This is signed by the patient in the presence of two witnesses and the coordinating medical practitioner. Both witnesses certify the patient appears to have decision making capacity, understands the nature and effect of their decision, and does so voluntarily.

The patient then makes a final request for voluntary assisted dying and appoints a contact person responsible for the return of any unused substance. The coordinating medical practitioner applies for a permit to prescribe a substance which the patient may self-administer or take with the help of a doctor if they are unable to do so.

The Voluntary Assisted Dying Review Board will monitor all activity under the Act and receive reports from participating health practitioners. A patient refused access may apply to the Victorian Civil and Administrative Appeals Tribunal for review of a decision.

The overseas experience

The Oregon Death with Dignity Act was passed in 1997 and has requirements for self-administration, terminal illness and residency. Canada and the Netherlands allow doctor-assisted suicide, where the doctor takes the final step in administering the substance. In Belgium and the Netherlands, people under 18can access assistance to die.

Victoria is the only state in Australia to allow assisted dying, but in Western Australia, the Joint Select Committee on End of Life Choices reported in August 2018 and recommended its introduction. South Australia may consider assisted dying laws in the next couple of years.

A private member’s bill failed to pass the NSW Upper House by one vote. Queensland and the ACT are undertaking parliamentary inquiries into end of life care.

Harriet Shing MP and Colleen Hartland MP react after the Victorian Upper House voted to pass historic euthanasia laws on November 22, 2017. Picture: Getty Images

Assisted dying was legalised in the Northern Territory between 1995 and 1996, before the Federal Government removed the power of the NT and ACT to pass ‘laws concerning euthanasia’. These powers may be restored in the near future.

The way forward

Assisting eligible people to die promotes patient autonomy in the face of a terminal diagnosis and unbearable suffering.

In Oregon, the most frequently reported end-of-life concerns were decreasing ability to participate in activities that made life enjoyable (88 per cent ), loss of autonomy (87 per cent), and loss of dignity (67 per cent). For many, having a choice about when to end their life provides reassurance.

Hospitals and aged care facilities are providing staff training and a voluntary assisted dying Implementation Taskforce is developing guidance, processes and systems for the proper operation of the Act.

No health practitioner or provider will be obliged to participate as the Act allows for conscientious objection. There is also no obligation for a healthcare practitioner to refer patients to a provider of this service. This may impact on a patient’s right of access, particularly in rural areas with a scarcity of healthcare providers.

Similarly, health services don’t have to provide voluntary assisted dying. Given the number of Catholic healthcare institutions in Victoria, this may also impact on equality of access to voluntary assisted dying by patients who want the right to end their life in the face of terminal illness and pain.

These issues will be the topic of a live panel discussion to launch the Melbourne Health Law and Ethics Network (HLEN) on Tuesday 13 November at 6pm at Melbourne Law School, University of Melbourne.

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