With the long overdue and very welcome passage in the NSW parliament of independent MP Alex Greenwich’s bill to legalise voluntary assisted dying, all six states have now legislated to allow the option of medically assisted death to those who are eligible and wish to die at a time of their choosing.  Estimates are that the NSW law will be implemented within 18 months.

Australia’s new Labor government will be quickly lobbied to allow the A.C.T. and Northern Territory governments to do the same. These jurisdictions are still without these laws and were destined to stay there had Morrison remained in power.

With those two gaps inevitably closing, Australia will have closed the book on medically assisted dying for all those who want it, right?

No, far from it. Eligibility criteria rule out large numbers of people who might want medical help to end their lives.

All Australian state legislation is broadly similar in its provisions. The Victorian legislation, which has been in place the longest, has this to say about eligiblity:

“They must have an advanced disease that will cause their death and that is:

• likely to cause their death within six months (or within 12 months for neurodegenerative diseases like motor neurone disease) and
• causing the person suffering that is unacceptable to them.”

The second dot point about unacceptable suffering gives sovereignty to the applicant’s tolerance for suffering, although this needs to be assessed and ratified by medical assessors. But the six and 12 month limits mean that a suffering person who has a disease judged by the medical assessors as unlikely to kill the applicant within those times will have their request denied.

The obvious problem here is that there are many thousands of people living with chronic, incurable and progressive diseases which cause them profound suffering – including mental and existential suffering – and whose suffering is likely to go on for longer than six to 12 months. If they apply outside those time limits, regardless of the strength of their desire to die sooner, they are likely to be refused.

Parkinson’s disease, emphysema and dementia are three important and prevalent examples of many more.

Parkinson’s disease

In April 2022, Former NSW Deputy Premier John Watkins wrote a harrowing account of his life with Parkinson’s disease in the Sydney Morning Herald. He was diagnosed 12 years ago in 2010. 70,000 people live with Parkinson’s in NSW alone. He described his life this way:

“a chronic, degenerative disease [which] continues merrily down its chosen path, dragging me behind it. In recent months, I’ve found greater impacts on my psychological and mental health, my speech and cognitive ability. That leads to self-doubt, depression, uncertainty, awful loss of confidence. How long it will torment me in this way before moving on to other things, I do not know.

The challenge of PD has changed my life like nothing else. I never expected it and I know I’m not dealing with it very well.

Me, you, none of us can escape the inevitability of life-changing challenges that are rolling down the years towards us. They make and too often break us. Parkinson’s did that for me. I have hoped over the years since that it would stir a stoic resolve, a capacity to bear the strain, and to move on, despite the weight. Rather it has left me feeling bereft, and hopeless.”

Watkins wrote nothing about wanting to end his life early. But many living in such a way might want to. One of my dearest colleagues took that step several years ago, surrounded by his family after a last meal and his favourite music. He was a doctor who had access to nembutal.

Emphysema

Emphysema is another very prevalent disease, with 4.8% (about in in 21) of those aged 45 and over living with it, sometimes for up to 20 years. It is progressive and incurable, with medication capable of only slowing progress and partially alleviating symptoms. In the final stage, which may sometimes last for several years, quality of life can be abject. It can be an exhausting trial to walk even a few steps, with stairs being very challenging. Those living like this are often housebound and so socially isolated.

I will never forget a woman who called me at work about 15 years ago.  “I’ve smoked for thirty years. I have emphysema. I am virtually housebound. I get exhausted walking more than a few metres. I have urinary incontinence, and because I can’t move quickly to the toilet, I wet myself and smell. I can’t bear the embarrassment, so I stay isolated at home. Smoking has ruined my life. You should start telling people about the living hell smoking causes while you’re still alive, not just that it kills you.”

Some living like this may want to end their lives. But again, they would be ineligible under the current legislation’s time limits until they were as assessed as being six or less months before death.

Dementia

When it comes to dementia, Andrew Denton has said “This is a much longer, and more difficult, conversation … [dementia] is the single most common question I have been asked over the last 6 years – what about people with dementia?”

The Victorian rules say this about those with dementia:

“Having dementia is not sufficient reason for a person to access voluntary assisted dying (the same as disability or mental illness), but a person diagnosed with dementia may be eligible if they meet all of the conditions, including having decision-making ability throughout the entire process.  (my emphasis)

When dementia affects a person’s ability to make a decision about voluntary assisted dying, they will not meet the conditions to receive assistance to die.”

When it comes to dementia, this catch 22 is both cruel and iniquitous.

Those of us who have completed living wills (advanced directives) and lodged them with our GPs and next-of-kin, have done so recognising that there may come a time near our death when we are unconscious and so unable to affirm to medical staff looking after us about what we want to happen. While next-of-kin can over-ride or fail to disclose a living will when a person is dying, this is far less common than them affirming a dying person’s known expressed interests.

So when a person is unconscious, medical and hospital staff cannot check with a clearly dying, terminal patient that they indeed still stand by their written, dated and witnessed preferences to not be given life preserving measures like resuscitation, assisted beathing or tube feeding. The medical staff instead check with next-of-kin what the patient’s wishes would be. Here, an advanced directive produced for corroboration would be of critical importance. Medical staff will generally then respect the past written words of the dying patient, in addition to the assurances of the next-of-kin that hastening death by withdrawal of life support is what the dying person would want.

The NSW Department of Health’s advanced care directive  that I have completed lists six “values” (see below) for the signatory to complete, as well as a number of explicit medical procedures that should not be attempted to prolong life.

If these directions are followed by medical staff, they will actively be failing to take actions in the knowledge that these omissions will cause the death of the person, as they wished in their advanced care directive.

But when it comes to a person with dementia who is legally judged as not being capable of requesting voluntary euthanasia, no such corroboration from proxies or living wills is allowed.

Front and centre of the assessment by those assessing the request that a person with dementia should be assisted to die, is the active, witnessed wishes of the person concerned. But if, while sentient, that person was to provide detailed specifications about when they would wish to be assisted with their suicide, they will have their wishes denied even if, when those conditions apply, they have ticked all the boxes at a time when they were sentient.

The glaring iniquity here is that anyone dying of any disease other than dementia, who either prepares an advanced directive or applies successfully for assisted dying, will have their wishes respected. Even if they are unconscious and cannot give final consent to actions being taken which will speed up their death, they will have their wishes respected.

But anyone seeking to ensure that their wish to not live with advanced dementia is respected (and assisted) will be side-lined and refused. They are destined, against their wishes, to live on for perhaps years in the twilight zone of total isolation, intellectual and sensory deprivation and unable to perform the most basic human functions by themselves.

My father had dementia and died in his sleep with it, not from it, at 89. He never expressed any wish to have assisted suicide and his quality of life, while a pale shadow of his younger self, was dignified and often contented (see my account of this at page 347 in this collection of writing).

But had he lived when voluntary assisted dying was legal, and when fully sentient, specified for example, that he did not wish to live when he could not recognise his own children, could not feed or toilet himself and answer the simplest of questions about his surroundings or circumstances, humane law on voluntary assisted dying should allow his wishes to be respected.

The situations I have described cannot be swept aside as too-hard-basket exceptions not requiring amendments to the various state laws. Certainly, the cardinal principle of sentient consent will be challenging here. But that principle is already considered where advanced directives are respected for terminal unconscious patients.

The challenging difference of course, is that when advanced directives are respected, life-saving medical procedures (CPR, tube feeding, renal dialysis, continuous administration of a drug) are not given. Steps are omitted that will result in death.  With voluntary assisted dying, a commission occurs: the active administration of a drug that will quickly cause death.

But when the intent in both cases is to accelerate death, acts of omission and commission both achieve the same result, albeit at different speeds. The outcomes for both here are the same, but the speed of death different. But why should the speed of accelerating death be at all relevant?

Instead, the respect for the wishes of the person who will die are different. In the case of an unconscious person without dementia with an advanced care directive, medical staff can hasten death by active decisions to not prolong life. They do not say among themselves “but we can’t check with the dying person if they earlier stated wish to die is still their wish – so we must prolong life, not end it”

Yet with the person with dementia who has actively taken steps to ensure they do not live in a state in which they desperately do not wish to live, no such respect is given.

That cannot be either just or right.

A final word to Andrew Denton “I also harbour concerns about asking a doctor to end the life of someone who can no longer competently request that act. I’m not sure an advanced care directive, no matter how meticulous or frequently updated, can fully answer a doctor’s reasonable concerns. That being said … regardless of our existing VAD laws, this conversation will continue.”