Reportage

Dying wish

Dementia and end-of-life choices

‘NY-NY-NY-ny-sh-sh-sh-sh-sh-ny-ny-ny-ny-ny.’

‘Hi Mum,’ I say.

I lean over, kiss her forehead and pull up a chair. She’s in a dark-blue nightie and is lying on her side, legs drawn up beneath her like a dying bird, arms held out in front of her, bent at the elbows across her scrawny chest.

She pulls at a thread hanging from the sleeve. ‘Ny-ny-ny-ny-sh-
sh-sh-sh-ny-ny-ny.’

At the same time, she is grinding her teeth, a sound as loud and harsh as a stick being dragged along a picket fence. In the background, a CD of meditation classics pipes from the small stereo on a side table.

I try her name, more brightly, but feel helpless. ‘Susie,’ I call. I stand over her again, forcing myself into her line of vision.

‘Yes,’ she says flatly, and I’m taken aback by the sudden acknowledgment. For a moment, it seems she’s recognised her own name.

But I cannot be sure, and her grey eyes don’t meet mine, or register my presence. ‘Ny-ny-ny-ny-ny,’ she resumes. Her head lolls back and forth.

Suddenly, a deep exhaustion seems to fall upon her. She raises a hand to her brow, sticks her thumb in her mouth, falls silent, and her bowels open.

Sue is seventy-two. Alzheimer’s disease has chipped away at her for eighteen years. She has been a resident in this facility in Brisbane’s northern suburbs for the last five. She has been bedridden and unable to communicate for twenty-six months.

I have been here for barely fifteen minutes, which is about average these days. I call on a nurse to attend to her, apologise and retreat.

Passing through the lounge on the way out, another woman, probably a little older than Mum but not as advanced in her own decline, looks up at me hopefully from her chair.

I have come to know that look. Her in-built facial recognition software is searching frantically for a match, making me pause.

‘Are you here to see anyone special?’ she asks.

 

FOUR YEARS AGO, my mother asked me to kill her.

As she stumbled down the staircase of her own decline, she expressed the wish to end her life many times. On none of those occasions would she have possessed the legal capacity to make a request for assisted dying – had such laws existed in Queensland, and should they have provided for her illness.

What no one doubts is that she wished more than anything for her suffering to be relieved, if not ended.

Partly, it was because she knew too well what lay ahead. She had spent much of her career in aged care, with the Blue Nursing Service (now Blue Care) and later in the Aged and Extended Care Unit as a senior Queensland Health bureaucrat. Many times, she described Alzheimer’s disease as her worst nightmare, years before it was visited upon her.

Her story has led me here: to the most distant, ethically perilous edge of the euthanasia debate in Australia. I am not alone in looking over that edge. ‘Whenever I have spoken about this publicly, it is the number-one issue raised,’ says television presenter and producer Andrew Denton, who founded assisted dying advocacy group Go Gentle in 2016.

This should be no surprise. Our population is growing older, living longer – and getting sicker. Dementia is now the second-leading cause of death in Australia. It is the leading cause of disability for those aged over sixty-five. Nearly 460,000 Australians are living with one of the various forms of the disease.

Without an effective treatment, that number is expected to increase to 590,000 by 2028, and over a million by 2058, by which time the cost to the economy is projected to be over $36 billion. In 2018, it was estimated at $15 billion. This is not to suggest that people with dementia are a drain on the national coffers. It is to say that the issue is not going to go away.

 

ON 19 OCTOBER 2017, Mary Wilson, a seventy-year-old public servant in Canada suffering from Alzheimer’s disease, became the first dementia sufferer to end her life under that country’s medical assistance in dying (MAID) legislation, introduced by Justin Trudeau’s centre-left Liberal government in 2016.

The case was controversial. Wilson, who suffered from no other illness and retained insight into her condition until the end – her last words were ‘I’m ready’ – had made her wishes abundantly clear. But doubts persisted about her cognitive capacity. After her death, a ten-month investigation by British Columbia’s medical regulator cleared three doctors of wrongdoing.

It set a medical, if not judicial, precedent – the physicians faced no criminal sanctions – with implications for other Canadian dementia sufferers, and the future of the country’s assisted dying laws, which require that the death of a MAID applicant must be ‘reasonably foreseeable’.

Those words were sufficiently open to interpretation for Wilson and her treating team to test the limits of their application. Last year a Quebec court ruled the ‘reasonably foreseeable’ section of the law invalid on discriminatory grounds, finding in favour of two sufferers of degenerative diseases who had their own MAID requests denied.

Trudeau, whose party now governs in a minority with Bloc Québécois after the 2019 election, said before the poll that the laws would be rewritten and expanded in response to the judgment. Such an expansion may also explicitly make provision for dementia sufferers, validating and codifying the Wilson precedent.

The Netherlands, which legalised euthanasia and assisted dying in 2002, is also wrestling with this fraught area of the law. In September 2019, a court acquitted a doctor who had given a lethal injection to an unidentified seventy-four-year-old woman (known only as Ms A) three years earlier.

Her wishes had been documented in an advance care directive, but when her time came, unlike Mary Wilson, she was neither competent nor consenting. According to a report in the London-based Journal of Medical Ethics, she struggled and had to be held down by relatives.

 

MORE THAN TWENTY years after John Howard’s government repealed the Northern Territory’s Rights of the Terminally Ill Act, the push for voluntary assisted dying (VAD) in Australia has slowly but inexorably gained momentum. Victoria, under Labor Premier Daniel Andrews, was the first state to enact legislation in 2017, coming into effect on 19 June 2019.

Western Australia followed two years later, with Mark McGowan’s Labor government passing legislation on 10 December 2019, effective in eighteen months. In Queensland, Annastacia Palaszczuk’s Labor government, which faces the polls in October, has held its own parliamentary inquiry into the matter. The committee was due to deliver its report as this edition went to press in March.

Recent parliamentary votes in Tasmania (November 2013), South Australia (November 2016) and New South Wales (November 2017) all failed by a single vote – in South Australia’s case, the casting vote of the Speaker. All were moved by private members’ bills or representatives from minor parties, often via cross-party working groups.

The laws that passed in Victoria and Western Australia, however, were moved by the governments of the day, emboldened by years of polls indicating consistent and overwhelming public backing. A Vote Compass poll in May 2019 showed support had jumped fifteen points in six years to almost 90 per cent in favour.

‘There isn’t a social issue which is even close to voluntary assisted dying in terms of public support over the last two decades,’ says Denton, who became an advocate after watching his father die in unrelieved agony in 1997. ‘Same-sex marriage was a distant second. And this is universal. It doesn’t matter what poll, it doesn’t matter which political party, it doesn’t even matter which religious denomination. It’s always 70 per cent and up, and now it’s trending closer to 90 per cent.

‘That tells you that this isn’t a trendy or a woke moment or anything like that; it tells you that our society feels very strongly that if somebody is terminally ill and suffering, then they should be offered a full range of choices.’

But the surge in support exists in a wider context. The day before broadcast of the first part of the ABC Four Corners investigation Who Cares? in September 2018, the Royal Commission into Aged Care Quality and Safety was announced by the federal government. It has heard damning evidence of systemic abuse and neglect in aged-care facilities.

Department of Health figures released in September 2019 show more than 120,000 senior Australians are waiting for a government-subsidised Home Care Package. The Royal Commission has heard that 16,000 people on the waitlist died in 2018. Another 13,000 were placed into aged care prematurely.

While demand for palliative care services increases, the sector remains chronically underfunded and inequitably distributed, particularly in regional and remote areas. Aboriginal and Torres Strait Islanders and people from diverse cultural backgrounds are the most poorly served. The range of choices for the terminally ill and suffering, therefore, is already limited.

Sarah Winch, head of Medical Ethics at the University of Queensland (and who, early in her career, was mentored by my mother when both were in the Blue Nursing Service), describes the introduction of voluntary assisted dying amid such a state of affairs as an admission of policy failure. ‘To have choice, you have to look at all the other variables as well,’ she says.

Winch is supportive of assisted dying, but says it should never be a cheap and easy substitute. ‘In an ideal world, we have good aged care, we do have proper care of people with dementia, and palliative care as well. I cannot see why those things cannot be funded adequately in a country as wealthy as this.’

She remembers an exchange with LNP member Mark McArdle, then the acting chair of the Queensland parliamentary inquiry into voluntary assisted dying. McArdle put it to her that ‘we do not live in a perfect world where in Cunnamulla, in Barcy [Barcaldine], in Winton and other places north and west we have access to the perfect palliative care system’.

McArdle’s point was that people who need not continue to suffer might wait forever before all the problems in aged and palliative care are fixed in a state as vast and decentralised as Queensland. (It is also possible that McArdle was playing devil’s advocate, telling Winch ‘that is the argument that is going to come back to us’.)

Nonetheless, Winch recalls, ‘I was deeply shocked by that comment. That was exactly what I didn’t want to hear.’ She replied to McArdle: ‘Morally, that is difficult to defend – it really is – because it is saying, “Unfortunately, you live in Cunnamulla. There’s nothing we can do for you, but here’s some VAD.”’

In the background, the federal government is preparing its religious freedom bill. Its second draft allows hospitals, aged-care providers and retirement homes to discriminate to preserve their ‘religious ethos’. The Catholic Church, implacably opposed to voluntary assisted dying in any form, claims to provide more than 50 per cent of all the palliative care beds in Australia.

Here is another, darker statistic. According to the Queensland coroner, 168 people with a terminal illness took their own lives in the years 2016 and 2017: seven every month. It is safe to assume – for such is the way with suicide – that many occurred in traumatic and violent circumstances, and that more would have tried and failed.

David Muir, chair of the Clem Jones Trust (established after a clause in the will of a former lord mayor of Brisbane left $5 million for euthanasia advocacy), says many would have been dementia sufferers, desperate to exercise agency over their lives by ending them before their disease robbed them of any remaining autonomy: ‘They’re taking their lives early to avoid a situation where they may not be competent or have any control over their end-of-life care.’

The Victorian coroner gave similar evidence of suicide among the elderly and terminally ill to that state’s parliamentary inquiry into assisted dying. That evidence was considered decisive in swaying the final vote in favour.

 

THE VICTORIAN VOLUNTARY Assisted Dying Act 2017 is highly proscribed in its application – so much so that state Premier Daniel Andrews, who boasted on his 2018 re-election that Victoria was ‘the most progressive state in the nation’, also boasted that the legislation was ‘the most conservative model of its kind in the world’.

The legislation demands that a person seeking assisted dying must have an incurable and advanced condition causing suffering ‘that cannot be relieved in a manner that the person considers tolerable’. They must have a prognosis of no more than six months to live – twelve months for someone with a neurodegenerative disorder – and must retain decision-making capacity.

The Western Australian model is similarly restrictive, with two important differences: a patient can choose for a medical practitioner to administer medication (in Victoria, patients must self-administer, unless they are incapable of swallowing), and Western Australian doctors may raise the option of assisted dying with the patient themselves.

While neither model specifically excludes dementia sufferers, in practice they are disqualified on prognostic and capacity grounds. Dementia is incurable, and ultimately fatal. But its long, elastic, unpredictable arc means even the most experienced geriatricians can no more predict life expectancy than divine the length of a piece of string.

Typically, most people in the final stage of dementia are unable to communicate, let alone give informed consent. Victorian Attorney-General Jill Hennessy accepted that the narrowness of the legislation would disappoint sufferers and their families, but that capacity was ‘critical to the security and protections of the model’.

For Denton, it was a case of not letting the perfect be the enemy of the good. ‘I spent hundreds of hours having conversations with politicians on all sides of the debate, and what I saw very clearly was that almost without exception, MPs saw this as the most difficult, the most significant and consequential legislation they would ever be asked to vote on.

‘It was very clear, politics being the art of the possible, that it had to be a conservative law to get through. I used to say to advocates that I would rather have 80 per cent of something than 100 per cent of nothing, because the majority of people that access these laws overseas fall within the compass of the [Victorian] law, which is those with cancer.’

In a submission to the Victorian parliamentary inquiry, Dementia Australia argued that limiting access to voluntary assisted dying via prognosis effectively discriminated against people suffering from the illness. It lobbied unsuccessfully that sufferers should be able to make an enduring request for voluntary assisted dying via an advance care plan.

Such is the case in Belgium and the Netherlands, which authorise euthanasia for people who no longer have the cognitive and physical capacity to execute their own wishes. The case of Ms A, however, demonstrated the limitations and dangers of advance directions.

For someone in the early stages of dementia, cognitive capacity is notoriously fluid. An advance care plan written after a diagnosis could already be compromised by the sufferer’s decline, and potentially by family members who may have their own, potentially dubious, motivations to assist them, with doctors being left to evaluate the paperwork.

Associate Professor Stephen Macfarlane, chair of the Faculty of Psychiatry of Old Age for the Royal Australian and New Zealand College of Psychiatrists (and also head of Clinical Services at the Dementia Centre in Melbourne), says a dementia sufferer’s words cannot be relied on for end-of-life care, even if expressed previously in writing.

‘Sure, some people [react badly] when they get the diagnosis, and they might make a decision that they would like to be binding in ten years’ time,’ he says. ‘But when that time comes, they might have no memory of making that decision, and they’ve got no way of articulating their current position, or capacity to make a decision of such magnitude.’

He invokes the case of Ms A. ‘[What happens] if they’re voicing their opposition to being strapped down, or administered medication against their will? It really puts them into a bind and commits them to a terminal decision, based on what their idea of a future with dementia might be like. And who’s going to hold them to that?’

Lindy Willmott, professor of law at Queensland University of Technology (QUT), who has written extensively about assisted dying, says: ‘The standard of capacity required for a decision differs depending on the complexity of the situation. I would have thought voluntary assisted dying [requires] a high threshold to establish decision-making capacity.’

My mind flashes back to an incident a decade ago, when my mother was on the brink of her diagnosis, and when my brother and I – with the aid of her older brother – accompanied her to a meeting with a lawyer to obtain power of attorney over her affairs. All of us were aware the window of opportunity to ratify the document was closing fast.

Mum had been a difficult patient, fearful and prone to furious outbursts as we shuttled her from one medical appointment to the next. But as diminished and distressed as she was by this surrendering of control, she well understood this particular meeting’s purpose and importance – until it was time to put her pen, falteringly, to paper, and her eyes went glassy.

‘I have no idea what we’re doing here,’ she exclaimed.

 

CHRISTINE SMYTH, FORMER president of the Queensland Law Society and an accredited specialist in succession law on the Gold Coast, winces when I tell her this story. ‘If I was in that situation that you described, I would not have witnessed that power of attorney,’ she says.

Smyth is conflicted: while personally in favour of voluntary assisted dying, she harbours multiple reservations about the use of advance care plans to communicate one’s dying wishes. When a person has lost capacity, she says, the term ‘voluntary’ loses all meaning.

She cites concerns for medical practitioners: ‘Killing someone has an enduring impact on the person who performs the act, it never leaves them.’ An expert in elder law, she also worries about the potential for coercion, often borne of so-called inheritance impatience, and the grey area between loss of competence and autonomy as people age.

‘What I see is a meshing of care with control, and when those lines start to blur, that’s where the real issue of elder abuse starts to occur,’ she says. ‘It’s when the adult child becomes parental towards their own parent, notwithstanding their parent has their own mind and their own views.’

As an example, she posits this hypothetical scenario: an eighty-year-old woman still has good cognitive capacity overall, but is befuddled by internet banking, and so surrenders power of attorney to her children. With $200,000 in the bank, she decides to go on a half-year, $150,000 round-the-world cruise, and demands her children book it for her.

‘That doesn’t make for a sensible decision,’ she says. ‘But the dignity of self-determination – the dignity to be able to make your own mistakes – is part of the dignity of being an individual, and as long as someone has capacity, you must follow those instructions.’

Then she challenges me directly. ‘You’ve also got the issue of the suffering of the family, and how much does that suffering infuse the perception of where a person [who has lost capacity] is at? That is very difficult to extract.’ How much of my own grief, she asks, has informed – or skewed – my perception of what is in my mother’s best interests?

She is not being unsympathetic. ‘If I was ever visited with that particular illness, to the extent where I had lost the capacity to manage and control my own life and even my physical dignity, [then] I would take the same view that your mum took – I’d want the Tontine kiss.’

 

PEOPLE LIVING WITH dementia can lead productive, fulfilling and rewarding lives for many years after diagnosis. More often than not, they may be none the wiser as to their condition and live in a state of relatively blissful ignorance. Others who retain insight into their condition do their best to make use of what functional time they have.

Via Dementia Australia, I’m introduced to Juanita Hughes, a fifty-five-year-old woman with frontotemporal dementia. For Hughes, the link is genetic: her father also has the illness, as did her grandfather, her great-uncle, two other uncles and an aunt.

Hughes’ problem, at least for now, is not her memory. ‘Memory’s often the last thing that goes, because that part of the brain is still operational,’ she says. The more common early symptoms of frontotemporal dementia are ‘emotional blunting – people might not have empathy – or they become very scatterbrained… You’re not able to do detailed thinking.’

Hughes’ family history meant she was able to receive an early diagnosis last year, via neurological and genetic testing. But while she had already noticed difficulties completing tasks (‘very good at planning stuff, it’s the following through,’ she says), she appears anything but scatterbrained.

She has a scientific background, with a research master’s degree in bio­analytical chemistry, and, after pulling out of one PhD due to a knee injury that made it difficult for her to stay on her feet for long periods in a laboratory, is now doing a coursework master’s with the aim of embarking upon another doctorate related to her own genetic mutation.

Is she confident of completing? In answering, she is more worried about the durability of her bad knee than her brain: ‘I think I will. It was an injury to an already problematic part of my body that stopped me from doing it before, and that’s a one-off thing. I’d finished a master’s in the same area without having a problem.’

Hughes is a Seventh-day Adventist, and rejects voluntary assisted dying. ‘I don’t agree with choosing to stop,’ she says. ‘Seeing how people go, you wonder whether you want to hang around like that. The thing is, how much do you know about what is happening to you? Voluntary assisted dying has to assume you’ve got the capacity to make that choice.’

I also meet Eileen Taylor, a seventy-year-old living with Alzheimer’s disease, and her husband Dubhg (pronounced Doug). Like Hughes, Taylor’s link to the disease is genetic: her father suffered from the illness, and she too went through early genetic and neurological testing a decade ago. The onset of symptoms, while early, has been slow.

Taylor was a social worker with the Salvation Army. ‘I broke down in the office,’ she says about the moment she was told. ‘“Not me!” I’d been very actively engaged my whole life helping other people. But I was able to work the first five years, until I retired. My supervisor was aware of it and he was monitoring me.’

She has acute insight into her condition and is aware of the episodic nature of her own cognisance. ‘It’s like being in a fog. Mornings are not good for me – it takes a while to wake up.’ Usually, she says, she can push through; she’s just come back from a cruise. ‘Then I was up every morning! Prancing around. There was no thought of dementia at that time.’

The Taylors are now full-time advocates for dementia sufferers, and for assisted dying legislation that includes them. ‘If you have an end-of-life plan, and your end-of-life plan says that should I deteriorate to this particular level, then I would prefer that my life was ended, then that should be enough,’ Dubhg says.

Yet neither have prepared advance care plans. ‘I keep talking about it, keep wanting to do it. And I’m thinking it needs to be done ASAP,’ Eileen says. Dubhg says, correctly, that they have no binding legal force. ‘But I need one!’ Eileen insists. Dubhg attempts to mollify her: ‘I’m not saying you don’t need one. You do. I agree.’

Traumatised by her father’s passing, Eileen is adamant that she never wants to be placed in aged care. ‘I think he was chemically restrained, in a locked ward. I don’t think he got the care he needed, and I don’t know if we can get people to give me the care I need at home, so we’re between a rock and a hard place.’

I ask about her final wishes. ‘I think my wishes would be that when I don’t recognise anyone, and I become bedbound or whatever, then I would not want to live.’ Dubhg adds: ‘We’ve even talked about, if I was to get really ill, maybe we should do it together, or something like that. But anyway, we’ll see how we go.’

She quotes from a favourite Frank Sinatra song, ‘High Hopes’. In the song, an ant moves a rubber tree plant, as if by force of will. It’s about not giving up in the face of impossible, even absurd adversity.

In March 2020, they attended the Alzheimer’s Disease International conference in Singapore, where Eileen spoke about her chosen topic, hope.

 

DEATH, AND THE spectre of it, can do strange things to those in its orbit, as well as to those facing it.

The Very Reverend Peter Catt, dean of St John’s Anglican Cathedral in Brisbane, tells me: ‘I’ve got this vivid memory of a guy with a set of sunglasses on who had been called into hospital because his mum was dying. He basically said, “I wish she’d get on with it, I’ve got to get to work.” It wasn’t about his mum dying, it was about him.’

Catt approaches the debate around assisted dying in a self-confessed spirit of confusion. ‘When someone shares with me the agony of watching one of their relatives suffer like this, with dementia or motor neurone disease, I often say to them, well, there are worse things than death, you know.

‘And you, corporeally, are going through that, so your mother is not going through that experience alone. You and she together are going through something that is harder to bear than her just dying.’ His point, like Christine Smyth’s, is the difficulty of untangling our own distress, and motivations, in adjudicating the ‘best interests’ of our loved ones.

‘We don’t declare the things that shape our subjectivity,’ he says. ‘We have this false idea that we come to these arguments as objective people, and we’re not. The best we can aim for is an informed subjectivity, but we choose often not to inform ourselves of what is making us subjective.’

Catt is not just talking about individual subjectivity. Arguments about voluntary assisted dying and increased funding for aged and palliative care, he says, cannot be separated because we live in a utilitarian culture, which views a person who is no longer economically productive as a burden.

This broader contempt for the elderly is reflected in the way the aged-care workforce is viewed. ‘Unfortunately, it’s often the job of last resort for many people who can’t gain employment in any industry, and the aged-care staff we have are often poorly trained, certainly poorly paid and often poorly motivated,’ Stephen Macfarlane says.

‘Most aged-care staff become aged-care staff with no compulsory modules on dementia, so the people we’re expecting to look after people with advanced dementia simply aren’t equipped for it. If you change the training and qualifications, the standard would be a lot better.’

When I see my mother, I see her loss of dignity, her loss of autonomy, and a purgatorial existence that would challenge anybody’s idea of what makes a life worth living. Setting aside all other material and cultural considerations, that is what any philosophical argument about assisted dying ultimately boils down to.

But dignity, Catt cautions me, is also ‘something we give to each other, and if you recognise the inherent dignity in another person [then] I think it’s a slippery slope to argue that dignity can be lost because of a medical condition and the degrading of our bodies, because that can slide in all sorts of different directions.

‘I know people who have been unemployed for a decade who feel like they have no dignity. And on one level they don’t, because our culture and current policies treat them like trash. But I would argue they have an essential dignity that you can’t take away. The same as a person with dementia – their dignity is retained so long as others treat them with dignity.’

He says the Anglican Church has a greater capacity to adapt to whatever legislation regarding voluntary assisted dying may or may not be passed. It is a broad church, from the ultra-conservative Sydney diocese to Father Rod Bower’s rebelliously progressive parish in Gosford on the NSW Central Coast. ‘If it happens, our priests will sit with anyone who chooses to exercise it. The Church will still retain its pastoral heart, even if it remains concerned about some of the implications.’

In a statement on the Catholic Archdiocese of Brisbane’s website, Archbishop Mark Coleridge states that ‘when we talk about so-called voluntary assisted dying, euthanasia or physician-assisted dying, or however else it’s styled, we can’t avoid the fact that we’re talking about the intentional killing of a person.

‘As a Church, we oppose the legislation of any direct action specifically intended to bring about the death of a person… Better end-of-life care begins with better conversations about death and dying, and how we can die well in ways that do not undermine the foundational values of our society.’

 

DR CHRIS MOY, president of the South Australian chapter of the Australian Medical Association, is frustrated. He talks about voluntary assisted dying as ‘this disproportionately large debate about this little esoteric issue, which it is, to us… Because no matter whether you have voluntary assisted dying or not, you need all this other stuff.’

This ‘other stuff’ is not just sufficient palliative care resources, but higher levels of death literacy in the community. While an advance care plan may have no legal force, he says, ‘it’s still the single most powerful tool for self-determination at the end. Who cares if there’s voluntary assisted dying if people aren’t writing down their wishes?’

If we don’t, Moy says, ‘that’s when the disputes happen, and that’s when you get a bad death. And if you think about it, the people who see bad deaths are not the person that dies. The person’s dead. The people that remember a bad death are the people left behind, and they remember the uncertainty, the guilt, the dropped balls.’

He tells me about an elderly woman with end-stage lung disease, who was being flipped back and forth between her aged-care facility and hospital, and still smoked like a stack.

‘I said to her, “You know you’re going to die from this condition at some stage, don’t you?” And she hadn’t realised that, because nobody had told her. And the second thing I said was, “You know, you don’t actually have to go to hospital,” and she goes, “I don’t? But what would happen then?”

‘And I said, “Well, we can write down some instructions for the nurses. I’ll prescribe some morphine to give you when the next time comes, and instead of calling an ambulance we’ll give you the morphine to relieve your symptoms, and give you the nice warm fuzzy feeling that morphine does.

‘“It’s not euthanasia, it’s palliative care. And if you make it you make it, if you don’t, you don’t, but you’re going to go out in style, and between now and then you can just break out the Grange.”’

But not everyone is as refreshingly blunt as Dr Moy.

Two years ago, shortly after my mother became bedridden, she developed a urinary tract infection. My brother and I were asked if we wished to intervene via oral antibiotics. We agreed. The doctor hemmed and hawed, but said no more. Later, we realised that we had been shown a door to walk our mother through, and had unwittingly shut it in her face.

Should we have been informed that such infections, like pneumonia, are a common cause of death for people with dementia? ‘You were expected to read between the lines,’ Dying with Dignity Queensland president Jos Hall says. ‘If you don’t know the questions to ask, you don’t know the answers. You’ve got to know the code.’

Hall’s own mother, Peg, died after being admitted to hospital with an ulcer on her foot. She was ninety-eight, and decided she’d had enough. ‘She said, “I don’t think I want to continue, I think I want to go back to the nursing home and just be left alone,”’ Hall says.

‘And I said to her “You know, you can refuse your antibiotics if you want to. You’ll become septic, and you’ll probably die.” But I also said to her – because she was a tough old horse and very stoic – do not diminish your pain. When they ask you, don’t say that you’re okay, that you can cope with it. I didn’t say any more than that. I was extremely careful.

‘So, the doctor comes in and says – this is the code – have you got any pain? And she gave me a little nod and said, “Yes – it’s ten out of ten!” The nurse gave my mother some morphine, and she died of septicaemia – that’s what’s on the death certificate – forty-eight hours later. But that’s because I knew the code words, and she was smart enough to pick up on them.’

‘It can be perfectly legal to withhold or withdraw if that is in a person’s best interests,’ QUT’s Lindy Willmott says. ‘Legally, as substitute decision-makers – you and your brother – you could [have said], Mum wouldn’t have wanted that, Mum would find this an undignified existence, and it may have been perfectly lawful for you to withhold the antibiotics.’

When Willmott tells me this, I have a horrible feeling of having let my mother down.

 

WE OFTEN TALK about the ‘grey zone’ between living and dying and, sometimes, the fine line between palliative care and assisted dying. ‘What are the code words? We make the patient comfortable – we make them very comfortable,’ says Bill Potts, former president of the Queensland Law Society. ‘Palliative care can literally be a sort of chemical oblivion.’

Legally, however, it is a line in the sand. ‘What you’re talking about is the provision of palliative medication which is designed to address and relieve symptoms and manage pain, and the provision of that is perfectly lawful, even if it coincidentally hastens death, provided the intention of the health provider isn’t to accelerate death,’ Lindy Willmott says.

Dr Elissa Campbell, a geriatrician and the president of Palliative Care WA, says: ‘There is a misconception that making people comfortable at the end of life, and using medications like morphine to treat pain and breathlessness, actually is done with the intention to hasten death, which isn’t the case.’

I ask her whether my brother and I could have been better informed by my mother’s treating team – we could certainly have better informed ourselves – about her options at the time of her infection. ‘That’s a really tricky one,’ she replies. ‘A lot of health professionals feel very uncomfortable about those conversations.

‘I think that death has become very medicalised in Western culture and many people – even a lot of graduate nurses and doctors – have never seen somebody dying before, they don’t realise what those final stages of dying look like. And so that can make those discussions very difficult.’

There is also a misconception that palliative care applies only in the last days or weeks of life. In theory, it applies to anyone with a life-limiting illness from the time of diagnosis. Brutal economics, however, means this rarely applies to people with dementia, who may live for twenty years or more without the necessary levels of support.

For Andrew Denton, arguments about the increased funding of palliative care – which Go Gentle supports – are similar to strategies used to stall action on global warming and marriage equality. ‘The language of opponents is always “we shouldn’t rush this, not now, we’re not ready – anything but this, now.” They know that delay is their friend.’

But, he adds: ‘No law, however thoughtful or however necessary, is ever a perfect law, and there will always be difficult situations. There will always be a place for the Philip Nitschkes of this world, there will always be people importing Nembutal, and there will always be people taking desperate and sad measures.’

 

I REALISE THAT I’ve left my glasses in Mum’s room almost as soon as the secure doors shut behind me.

I buzz myself back in. The nurses are still attending to her and the door is shut. I wait awkwardly, feeling embarrassed and ashamed.

I believe in my mother’s inherent dignity and personhood, although we became strangers to one another years ago.

I try to remind myself that, while her illness may have overtaken her, it does not define her, no matter how long it keeps her imprisoned.

But it is beyond me to stay. When the nurses are finished, I go in, grab my glasses and leave, without pausing or saying goodbye for a second time.

Back at the exit doors, I see the older woman again, the one who had stopped me when I’d first tried to leave.

She’s wearing beige pants that contrast with a long-sleeved pullover as gaudy as a lorikeet, and she is smiling. She thinks she recognises me now, and I decide not to deny her the illusion.

She extends her arms out to me.

‘Would you like a hug?’ I ask.

‘Oh, that would be just lovely,’ she says.

I hold her as if she were my mother.

February 18, 2020

 

The author would like to thank everyone who gave their time to be interviewed for this piece, including Associate Professor Charlotte Hespe (Chair, RACGP); Associate Professor Sarah Holland-Batt; Maree McCabe (CEO, Dementia Australia); Professor John McCallum (CEO, National Seniors); and Emeritus Professor Malcolm Parker (Doctors for Assisted Dying Choice), whose valuable perspectives also helped inform this story.

 

REFERENCES

 

[i] Dementia Australia (2020). Key facts and statistics, updated January 2020. https://www.dementia.org.au/statistics

[ii] Grant, K. (2019). ‘From dementia to medically assisted death: A Canadian woman’s death, and the dilemma of the doctors who helped’, The Globe and Mail, 12 October. https://www.theglobeandmail.com/canada/article-from-dementia-to-medically-assisted-death-a-canadian-womans-journey/

[iii] The Canadian Press (2019). ‘Quebec judge invalidates parts of provincial, federal laws for medical aid in dying’, Global News, 11 September. https://globalnews.ca/news/5888949/quebec-court-medically-assisted-dying-law/

[iv] Abedi, M. (2019). ‘Does Canada’s assisted dying law need change? Federal leaders weigh in’, Global News, 3 October. https://globalnews.ca/news/5984982/assisted-dying-canada-election-quebec-court/

[v] Karasz, P. (2019). ‘Dutch court clears doctor in euthanasia of dementia patient’, New York Times, 11 September. https://www.nytimes.com/2019/09/11/world/europe/netherlands-euthanasia-doctor.html

[vi] Miller, D.G., Dresser, R. and Kim, S.Y.H. (2018). ‘Advance euthanasia directives in the spotlight’, Journal of Medical Ethics, 5 March. https://blogs.bmj.com/medical-ethics/2018/03/05/advance-euthanasia-directives-in-the-spotlight/

[vii] Hanrahan, C. (2019). ‘Euthanasia support strengthens to nearly 90pc, Vote Compass data shows’, ABC News, 9 May. https://www.abc.net.au/news/2019-05-08/vote-compass-social-issues-euthanasia-transgender-republic-drugs/11087008

[viii] Connolly, A. (2018). ‘Who Cares?’, Four Corners, 17 September. https://www.abc.net.au/4corners/who-cares/10258290

[ix] Thomas, S. (2019). ‘Aged care royal commission report condemns system as unsafe, reveals “shocking tale of neglect”’, ABC News, 31 October. https://www.abc.net.au/news/2019-10-31/aged-care-royal-commission-report-finds-unsafe-industry/11658328

[x] Alderslade, L. (2019). ‘Peak bodies say Home Care Package waitlist is still in crisis’, Aged Care Guide, October (n.d.). https://www.agedcareguide.com.au/talking-aged-care/peak-bodies-say-home-care-package-waitlist-is-still-in-crisis

[xi] Palliative Care Australia (2015). ‘Improving access to quality care at the end of life for Aboriginal and Torres Strait Islander Australians’, August (n.d.). https://palliativecare.org.au/wp-content/uploads/2015/08/PCA-Palliative-care-and-Indigenous-Australians-position-statement-updated-16-8-11.pdf

[xii] Health, Communities, Disability Services and Domestic and Family Violence Prevention Committee (2019). Public hearing – inquiry into aged care, palliative care, end-of-life care and voluntary assisted dying, transcript of proceedings, 5 July 2019, pp. 47–48. https://www.parliament.qld.gov.au/documents/committees/HCDSDFVPC/2018/AgedCareEOLPC/trns-ph-5July2019.pdf

[xiii] Karp, P. (2019). ‘The Coalition’s religious discrimination bill: what’s changed and can doctors refuse treatment?’, The Guardian, 11 December. https://www.theguardian.com/australia-news/2019/dec/11/the-coalitions-religious-discrimination-bill-whats-changed-and-can-doctors-refuse-treatment

[xiv] Greenwood, S. (2019). ‘Editorial: Our enduring commitment’, Health Matters, Catholic Health Australia, August (issue 89). https://www.cha.org.au/images/pdf/Health%20Matters/2019/CHA028_HealthMattersMagazine_AUTUMN_89_FinalMR.pdf

[xv] Caldwell, F. (2019). ‘Every month, seven terminally ill people take their lives in Queensland’, Brisbane Times, 1 September. https://www.brisbanetimes.com.au/politics/queensland/every-month-seven-terminally-ill-people-take-their-lives-in-queensland-20190830-p52me5.html

[xvi] Martin, L. (2018). ‘Daniel Andrews the man of the hour as even true believers are left stunned’, The Guardian, 24 November. https://www.theguardian.com/australia-news/2018/nov/24/daniel-andrews-the-man-of-the-hour-as-even-true-believers-are-left-stunned

[xvii] Smith, M. (2019). ‘Division remains over Victoria’s new voluntary assisted dying laws’, The Courier, 16 June. https://www.thecourier.com.au/story/6219293/d-day-for-choice-on-dying-as-euthanasia-laws-come-in-from-wednesday/

[xviii] Tomazin, F. (2017). ‘Assisted dying laws: Call for dementia sufferers to be included’, The Age, 27 May. https://www.theage.com.au/national/victoria/assisted-dying-laws-call-for-dementia-sufferers-to-be-included-20170527-gwejcf.html

[xix] Dementia Australia (2017). ‘A good death is my right: People with dementia and carers response to the voluntary assisted dying bill discussion paper’, April (n.d.), p. 4. https://www.dementia.org.au/files/VIC/documents/Consumer%20Response%20Victorian%20Voluntary%20Assisted%20Dying%20Bill%20Final.pdf

[xx] Alzheimer Europe (2016). ‘Belgium: decision making and legal capacity in dementia’, last updated 9 February 2017. https://www.alzheimer-europe.org/Policy-in-Practice2/Country-comparisons/2016-Decision-making-and-legal-capacity-in-dementia/Belgium

[xxi] Miller, D.G., Dresser, R. and Kim, S.Y.H. (2018). Op. cit.

[xxii] Coleridge, M. (n.d.) ‘Dying peacefully: No euthanasia statement’, Archdiocese of Brisbane. https://brisbanecatholic.org.au/life/dying-peacefully/

[xxiii] Parker, D., Lewis, J. and Gourlay, K. (2017). ‘Palliative care and dementia’, Dementia Australia discussion paper No. 43, prepared in collaboration with Palliative Care Australia, p. 9. https://palliativecare.org.au/wp-content/uploads/dlm_uploads/2018/05/Dementia-Aus-Palliative-Care-Discussion-Paper-36pp-R5.pdf

 

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