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Tuesday, August 9, 2022

As VAD is poised for nationwide legalisation, new research highlights doctors’ prediction quandary

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In 1995, the Northern Territory was the first jurisdiction in the world to legalise Voluntary Assisted Dying (VAD), but due to a Howard-era veto, neither the ACT or the NT have been allowed to action their own legislation for the last 25 years.

But the new Labor Government is paving the way to reverse this decision, with a private members bill, co-sponsored by Northern Territory MP Luke Gosling and Australian Capital Territory MP Alicia Payne, to be introduced to federal parliament on Monday, August 1.

Deliberating on this bill will mark the first conscience vote of the new Albanese Labor Government.

It’s a victory for the democratic will of Territorians, according to Council on the Ageing Northern Territory (COTA NT), who conducted a survey which revealed that 91 per cent of the Territory’s seniors support access to the practice.

Go Gentle Australia, a VAD advocacy group established by television presenter Andrew Denton, recently issued a statement urging the Federal Government to overturn the ban.

“Now that VAD laws have passed in every state, there is no reason to deny people living in the Territories the same democratic rights that other Australians take for granted,” Go Gentle Australia says in a statement.

“The almost 700,000 Australians who live in the Territories should not be treated like second-class citizens.”

Medical fraternity highlights complexity of VAD criteria

This policy development comes as new research from the University of Sydney highlights the need to do further work to clarify the accuracy of terminal prognoses.

Dr Sharon Nahm, an oncologist and prognostics researcher at the University of Sydney, says that whilst research indicates that doctors’ prognoses for terminal cancer generally bear out, this is not empirically proven for other terminal conditions.

“Most [cancer] patients in these studies with an expected survival time of less than six months died within six months … [but] we have no data about prognostication in people with other terminal illnesses.

“Assessing a person’s eligibility for VAD is difficult because prognostication is difficult, prognosis is inherently uncertain, and the eligibility criteria are not clearly specified.”

“The VAD legislation requires doctors to predict an unspecified probability of a patient dying within a certain period,” Nahm and colleagues wrote in their research paper.

“For example, ‘on the balance of probabilities’ is a legal concept, typically applied to the burden of proof in civil claims, generally taken to mean ‘more probable than not’, and therefore perhaps corresponding to a percentage probability of 51 per cent or more.

“Does this mean that a person may be eligible for VAD if their probability of dying within six months is judged to be 51 per cent or higher?

“The phrase “expected to die within six months” implies a higher degree of belief, but does this correspond to a probability of 70 per cent, 80 per cent, 90 per cent, or some other percentage?

“This is different to the question more commonly asked by patients, which is ‘how long have I got?’,” Nahm says.

Dr Sharon Nahm says that prognostic criteria must be developed so that doctors are more confident in supporting potential VAD candidates.

An anonymous source tells Aged Care News that they are concerned the inexact science of prognostics may unduly influence patients to pursue VAD, having known someone to live years beyond their terminal prognosis.

“I personally don’t have any experience in discussing VAD with patients, so I am not sure whether they are made aware of the imprecision of estimating life expectancy,” Nahm notes in response. 

“I think the reality is, no matter how ‘certain’ a doctor assessing someone’s eligibility for VAD is, there will always be people who exceed these expectations — whether this is acceptable is another issue altogether.”

Most states do have a criterion that requires a person to be experiencing ‘intolerable suffering’ that cannot be relieved through alternative palliative care options, eliminating the risk that good quality of life will be needlessly sacrificed on the basis of prognosis alone.  

Nonetheless Nahm and her colleagues have been developing tools to strengthen patients’ ability to understand their prognosis and develop a plan that best matches their personal, end-of-life preferences.  

“We have, developed a website that assists oncologists with communicating prognoses to patients with advanced cancer, called 3 Scenarios for Survival, which takes an oncologist’s estimate of the likely survival time of their patient — that is, the median survival for a group of similar patients — and calculates best-case, typical and worst-case scenarios for survival.

“This is presented as a one-page summary that can be discussed with patients and their families.”

Evidence suggests that such care models could be beneficial if capacity could be expanded to encompass other medical conditions.

In a questionnaire-based study assessing the tool, recently published in the Journal of Supportive Cancer Care, 91 percent of patients, 96 percent of oncologists, 91 percent of family members and 84 percent of healthcare professionals found it helpful to have life expectancy explained and presented in this way.

More about the status of VAD across Australia

In Australia, VAD laws have been passed in all states, but territories remain restricted by overarching Commonwealth legislation.

Victoria and Western Australia have commenced provision of VAD, whilst the practice will become lawful in South Australia, Tasmania and Queensland in late 2022 — early 2023, and in New South Wales in late 2023.

To be eligible to access VAD, a person must meet a range of criteria including:

  • They are an adult with decision-making capacity;
  • They have a disease, illness or medical condition which will cause death within six months, (or 12 months in Queensland and in other States for a neurodegenerative disease);
  • Their condition is advanced, and is causing intolerable suffering.

Residential aged care facilities and hospitals may decide whether to provide VAD, and the level of support they offer those wanting to access VAD, and health professionals can conscientiously object to provide the service if they so choose.

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  1. But what about the people who will live for years, bed ridden, unable to do anything for themselves, fed the same pureed slop everyday, left in residential facility with no visitors and the only thing to look forward to is years of the same? Just because they’re able to stay alive for years doesn’t mean they should be forced to.

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