‘She died all alone and this is not right’
Amy Nankivell’s mother committed suicide 10 years ago after a long battle with multiple sclerosis (MS).
- Queensland Parliament passed the Voluntary Assisted Dying Bill 2021 in September. This will allow eligible people to access Voluntary Assisted Dying as an additional end of life option in Queensland.
- In a balanced and fair debate, the positive aspects of end of life need to have equal voice.
- A safeguard of the proposed scheme is that people will need to have decision-making capacity at all stages of the process.
In a harrowing submission to a Queensland parliamentary committee in 2019, the Mackay woman described how her mother, Rosie Mott, made the choice to end her life three days after Christmas in 2011, and the devastating consequences for her family.
“She was suffering from a very aggressive form of MS,” Ms Nankivell told the committee in one of almost 5000 submissions on the controversial question of Voluntary Assisted Dying (VAD).
“She had very little quality of life left, she was permanently in a wheelchair and was unable to feed or bath herself.
“She was an independent, head-strong lady who didn’t like asking for help, and told us all she refused to be cared for or be put in a home, where her only choice then would be to starve herself.
“We were aware of her plan and my stepfather helped organise the things she would require to end her life.
“Sadly, because of the law and the way it stands at the moment, none of us could be with her at the time of her passing.
“She died all alone and this is not right.”
Ms Nankivell told Queensland MP’s that her stepfather was charged with assisting her mother’s suicide and, after a lengthy court hearing, he was found not guilty.
“People should be allowed to make the choice for themselves to die, rather than suffer.”
Whether dying Queenslanders should have control over their death has been in the spotlight in recent months, as the state parliament considered the introduction of VAD laws.
Thousands of acutely distressing stories from Queensland families have been documented by a parliamentary committee, at times leaving committee members in tears.
The Health, Communities, Disability Services and Domestic and Family Violence Prevention Committee completed 34 hearings across Queensland and took evidence from 502 witnesses.
MPs heard that every four days in Queensland, a person suffering a terminal illness took their own life.
Despite also hearing opposing views, the committee recommended that laws be drafted to allow VAD in Queensland.
A Bill was introduced to Queensland parliament in May this year and MPs voted to legalise VAD in September, although it will still be some time before the laws take effect.
So, what is VAD? Do we need it? And how would it work?
Respected UQ researchers and health leaders have been involved in the conversation about end-of-life care and contributed to the Voluntary Assisted Dying Bill, which was drafted by the Queensland Law Reform Commission.
Here they will answer the frequently asked questions about the laws, which Queensland Premier Annastacia Palaszczuk has described as an "important" and "historic” reform.
What is VAD and do we need it?
Under the law, VAD would allow an eligible person who is suffering and dying to choose when and how they die.
But palliative care expert Emeritus Professor Geoff Mitchell (pictured) said before pressing ahead with the legislation, it was time for a conversation about death.
“Death is portrayed as abhorrent and to be avoided,” Mitchell said.
“The process of dying is not understood well, and the degree of suffering that dying entails may be misrepresented in public debate.
“Dying is not pleasant but, managed well, it is not intolerable either.
“The stories of suffering that are presented in favour of VAD do not present this other side of the story and, for a balanced and fair debate, the positive aspects of end of life need to have equal voice.”
Mitchell is well qualified to speak about death.
He has been a GP for almost 40 years and has researched palliative care for 25 years.
He helped build a hospice in the community of Ipswich, west of Brisbane, and contributed to the development of a highly successful palliative care plan for the region, which is used as a model for end-of-life care.
In his many decades as a GP, Mitchell said he had been asked only once to help someone kill themself.
“It was a man in his early 70s dying of cancer, and he asked me several times to help him end his life,” he said.
“I could see the logic in what he was asking me, but it wasn’t a difficult decision for me because the law protected me, in the sense that I just couldn’t do it because it was illegal.
“Had he asked after this legislation was introduced, I would have been in a personal dilemma.
“I’ve taken an oath to do the best I can for people – in medicine, we all do that – and I’m yet to be convinced that letting people take their own lives upholds my Hippocratic oath.
“The law says I would then have to refer him on to someone who would do it and to be honest, I haven’t met that person yet.
“Maybe I just talk to the wrong people, but I don’t know anyone who would be happy to help make that happen.”
“Having choice about the timing and circumstances of your death is really critical,” Pachana said.
“People feeling like they are trapped, like they’re condemned to living in pain or living in extreme distress, is not what we want.”
Pachana has spent years consulting in nursing homes.
“I have had a personal situation where a person was in very, very desperate pain,” she said.
“It couldn’t be relieved, and they were calling out every three minutes, and it was one of the few times as a clinician when I went home and couldn’t get that person out of my mind.
“It was a very difficult case for those caring for this person and for their family.”
Image: Anjanette Webb
How would VAD work?
- The law allows eligible people who are dying to choose the timing and circumstances of their death.
- It must be voluntary with no evidence of coercion.
- It must be assisted by doctors and nurses. The patient either administers the substance themselves, or a doctor or nurse will administer it for them if they are unable.
- The person must be dying and in intolerable pain from a disease or illness that is expected to kill them within 12 months.
- The person must be separately and independently assessed by two doctors to be eligible.
- The person must have decision-making capacity, be at least 18 years of age, and fulfil a residency requirement.
The scheme has safeguards:
- There must be three separate requests that are clear and documented.
- The process has a waiting period of at least nine days between the first and final request.
- The patient must be told, more than once, that they may decide at any time not to continue with the VAD process.
- Any doctor, nurse or health practitioner who has a conscientious objection to VAD will have the right to choose not to be involved in the case.
- A new Oversight Board will ensure that the law is complied with.
Image: dubova/Adobe Stock
Image: dubova/Adobe Stock
What is the distinction between VAD and palliative care?
According to Palliative Care Queensland Chief Executive Officer Shyla Mills, palliative care and VAD are different.
Anyone eligible to access VAD would not need to stop palliative care to access the scheme.
But Mitchell said it won’t work that way.
“Palliative care is expected to provide care in the last six months of life – the VAD legislation becomes valid with a prognosis of 12 months or less,” he said.
“There is a built-in inequity that has to be addressed to balance out the scales.
“Also, too little attention is paid to the issue of death literacy.
“Too many people simply do not understand the process of dying, and the nature of suffering and loss – the scales are tipped in favour of avoidance at all costs.
“Once people reach palliative care, it’s rare that they start to talk about VAD when palliative care has actually been reached.”
Pachana said palliative care is a vital part of the healthcare system.
“Excellent palliative care can do a lot to address the fears that people have at end of life and those professionals working in palliative care have a whole toolkit to support people at the end of their life,” she said.
What will it cost?
UQ’s Professor Brenda Gannon, an international expert in the field of the Health Economics of Ageing, said very little academic research has been undertaken on the costs of VAD.
But she did say that end-of-life care is very expensive.
Professor Brenda Gannon
“If you look at the cost of health care across your life, you spend the most in the last years of your life,” she said.
“About 20 per cent of lifetime health care expenditure is in the last year of life, and up to 40 per cent of that is in the last month.
“People surveyed at end of life said they’re not that concerned about the cost of their end of life care but more concerned about their quality of life and their family’s burden, which can be quite costly.”
Gannon described this as a very tricky area and issued a word of caution.
“What I would warn about is not to have a supplier-induced demand situation,” she said.
“What I mean by that is that by increasing the facilities available to do this, we don’t want there to be increased demand for VAD just because it’s there.”
The Queensland Government is promising an additional $170 million over five years to bolster the state's palliative care services with the introduction of VAD.
Palliative Care Queensland has put forward a $241 million-a-year solution to fund end-of-life care.
Mitchell said high-quality end-of-life care needed to be available to all and it was everyone’s business.
“Specialist palliative care funding is barely adequate for the task now, and needs to be accelerated massively to meet demand,” he said.
“Even then, they won’t look after the majority of people who die.”
Can someone with dementia access VAD?
The short answer is no. A safeguard of the scheme is that people will need to have decision-making capacity at all stages of the process.
This safeguard aims to help protect the vulnerable from coercion or exploitation.
There is currently no treatment or cure for dementia, which is a disease that affects almost one in 10 people over the age of 65. It is the second leading cause of death in Australia and the leading cause of death for Australian women.
Mitchell said in the next 40 years, the situation will get worse, placing an intolerable strain on the health system.
“As the population ages, the number of deaths per annum in Australia will increase approximately 250 per cent from 2011 to 2061,” he said.
“Most will not die from cancer, but from multimorbidity and frailty and dementia, and our health system is not designed for this.
“People who have dementia can’t ask for Voluntary Assisted Dying and shouldn’t ask for it.
“Frailty and co-morbidity can last for years and years, but you’re only allowed to think about it in the last 12 months. The problem is, you don’t know when that 12 months starts.”
Pachana said the way forward may be to follow the lead of the Netherlands, where Advanced Care Directives enabled people to pre-express their wishes of the circumstances in which they want to trigger VAD.
Professor Nancy Pachana
“The patient could say, ‘if I was in pain that could not reasonably be relieved by medication, if there were extreme external means keeping me alive – like mechanical ventilation or being fed through a tube' – these are the kinds of things that you could specify quite clearly … ‘if I am in this kind of situation and have very poor quality of life, I choose to trigger VAD’,” she said.
“That’s what I would personally like to see. Having worked in aged care for a really long time, I have seen situations where I think all parties concerned, including the person living with dementia, would not choose that endpoint.”
Pachana also stressed that it is vital that the voices of people living with dementia are heard.
“You have the right to make choices that other people may not agree with,” she said.
“That respect must be afforded to all members of our community, including and perhaps especially, people living with dementia.”
Image: dubova/Adobe Stock
Image: dubova/Adobe Stock
What's happening in other states?
Queensland has now become the fifth Australian state to make VAD legal.
Victoria, Western Australia, Tasmania and most recently South Australia have all passed VAD laws.
Victoria’s scheme has been in place since June 2019 and Western Australia’s scheme commenced on 1 July 2021. The other states are still implementing the scheme.
How it got through parliament?
Fewer than 10 conscience votes have taken place in the Queensland Parliament – the most recent before this were the Civil Partnerships Bill in 2011, which legally recognised same-sex couples, and the 2018 vote on the Termination of Pregnancy Bill, which decriminalised abortion.
Polling early last year found that 77 per cent of Queenslanders supported laws that would allow VAD – in circumstances where a person in the late stages of an advanced disease was able to take life-ending medication prescribed by a doctor. Another 12 per cent said they were unsure, while 11 per cent opposed any such reforms.
Polling conducted by National Seniors Australia in the lead up to the vote found more than 80 per cent of Queensland seniors support VAD being available to people with a terminal illness.
Premier Palaszczuk indicated in the lead up to the vote that she had already made up her mind.
"I'm a Catholic, I've thought about this long and hard — I've had a lot of personal experiences in the last 12 months, and I've made up my mind based on what I've seen and based on those experiences," she told ABC News.
The final parliamentary committee report on VAD, published on 20 August, recommended the Bill be passed.
In September, the Queensland Parliament voted 60 to 29 in favour of VAD, after an emotional three-day debate.
When would it be introduced?
Now that the law has passed, VAD will be available in Queensland from early 2023.
What are the sticking points?
A potential sticking point has been identified by the Law Reform Commission: doctors intending to facilitate VAD over the phone or online, run the risk of being prosecuted under Commonwealth laws.
Currently, the Commonwealth Criminal Code makes it an offence to use a ‘carriage service’ (such as a telephone, videoconference, email or other form of electronic communication) to publish or distribute material that counsels or incites committing or attempting to commit suicide – and is punishable by a $220,000 fine.
The commission warned of rural and remote patients missing out on access to VAD unless the Australian Government clarifies how its laws will work with potential Queensland laws.
Legal experts argue VAD is not strictly suicide, and UQ’s Associate Professor Andrew Crowden agrees.
Crowden is an ethicist with extensive experience in clinical, research and organisational ethics and is the Chairperson of UQ’s Ethics Advisory Group.
“In Australia, VAD is not the same as committing suicide,” he said.
“From a philosophical perspective, this difference is substantial. For VAD, there is no substantive conflict with the Commonwealth legislation.”
Palaszczuk wrote to Australian Prime Minister Scott Morrison in May requesting the Australian Government take urgent action to amend the Commonwealth legislation to allow practitioners involved in the scheme to discuss VAD through telehealth.
The parliamentary committee investigating VAD recommended the Australian Government change the Criminal Code to insert a definition declaring that ‘suicide’ does not include VAD and a further amendment preventing Queensland health professionals from being prosecuted.
A last word
A decade on, Ms Nankivell said she still struggles with the fact that her mum died alone.
“I still miss her dearly – it was a rough way to go,” she said.
“It keeps me awake at night because her death should have been peaceful. She should have died with dignity.
"We should have been there with her, holding her hand so it wasn't so scary.
“It shouldn’t have been like that.”
Is Voluntary Assisted Dying (VAD) the ‘solution’ to end-of-life care?
Online webinar: Wednesday 3 November
A panel of UQ experts identify and unpack the logistical and economic implications surrounding end-of-life care now, and in the future. Attendees for this online event can expect to engage in discussions around end-of-life care, as well as what this Bill might mean for them moving forward.