Why can’t we decide when it’s time to go?

We need to find a way to extend euthanasia to the frailed aged who are not necessarily sick, and to people with dementia.

Dr Rodney Syme before his death in 2021. Having treated many people with terrible illnesses, he was a lifelong advocate of euthanasia.

Dementia is the worst disease known to man. It is the worst journey in the world. It is a progressive terminal illness that has no cure. It lasts from five to 15 years, gradually stripping away all those assets that make us human, and it is often accompanied by unrecognised significant physical suffering. In the early – still cognitive – stage, psychological and existential suffering can occur from the contemplation of the future. In the middle – diminished and confused – stage, awareness of losses is painful, and psychosis may develop.

In the terminal stage, the patient is vegetative.

When it can be borne no longer, aged-care placement becomes unavoidable. This institutional care is barely adequate, and sometimes quite inadequate. It comes at great financial cost to families and to the community at large.

A Completed Life by Dr Rodney Syme

There is no accepted approach to management except “care.” From an ethical point of view, any other treatment suggestion – yes, I am talking about euthanasia – is currently untenable.

In my view, a doctor confronting a patient with the diagnosis of an incurable terminal illness has a duty to inform that person of the consequences of the illness, its likely course, and complications.

This is rarely done with dementia. In my opinion, patients should be shown a sensitive video of the journey, so that they are fully informed about what lies ahead for them. Doctors are legally obliged to fully inform their patients who have cancer – why not those who have dementia? It borders on the unethical to not at least offer more information about the diagnosis and the reasons why.

In the Netherlands, the “end-of-life law” that allows for euthanasia is based on “intolerable suffering” rather than “terminal illness.” In practice, this means it has been gradually accepted that people diagnosed with dementia can be given assistance in dying while they remain competent.

The difficulty is the timing of such a decision.

Australia is 30 years behind the Netherlands in considering this problem, but I believe we will have to seriously address it within 20 years.

Currently, however, there is one important action that competent people can take. If you are concerned about the possibility of dementia on the basis of family history, if you are living to an age where the incidence of dementia is considerable (over 80), or you have been diagnosed with early dementia but are still competent, then it is essential that you complete a watertight advance care directive.

Such a directive must make it clear that if you become incompetent to make your own decisions, then no life-prolonging treatment is to be administered to you, and that maximal palliation of any suffering as a consequence of refusal is to be provided. This must include the refusal of assisted spoonfeeding, the most devastating prolonger of demented life. This directive is to allow natural dying without unwanted medical intervention, and prevent the prolonging of life into the late stages of dementia.

The wonders of medical science have now advanced the average life expectancy in Australia into the early 80s, and it is rising. While beneficial in many respects, it also means that as we age we will suffer from a number of crippling degenerative diseases that can lead to dependency – the inability to look after ourselves, which opens the door to the aged-care home.

There is no doubt that the vast majority of Australians view such an outcome with horror. Only 1 per cent of Australians express a wish to die in aged care, yet 90 per cent of Australians who enter aged care die there, while the remaining 10 per cent die after acute transfer to hospital.

Palliation of dying in aged care is not complex: it requires a consenting patient, sympathetic staff and attending doctor, and appropriate medications. Yet palliation in aged care is poorly managed and resisted by some managements.

Some find the aged care experience to be better than they anticipated, some tolerate it since they have no alternative, but a number rail against it, while a very few end their own lives to escape it. My own counselling indicates that many more would take this last option if they had a dignified and secure way of doing so.

Why do they consider this? Because by the time they have reached a state of dependence requiring such care, they have reached a stage of completed life. They have reached a point of social death, where all purpose and pleasure in life have gone before the time of their biological death. As the Dalai Lama would describe it, their lives have lost meaning.

The concept of a completed life is not difficult to comprehend, but many of the frail aged find themselves exhorted to keep going, despite the varying combinations of blindness, deafness, loss of (or painful) mobility, incontinence and declining cognition, not to mention poor food, boredom and loneliness. They are exhorted to keep going because there is no alternative – except the deliberate cessation of fluids and food.

It is astonishing that this should be a legal option for people with completed lives, but a rational, carefully considered, medically discussed and supervised peaceful death remains illegal. If a person’s journey is complete, why do we determine that they must go all the way to the terminus?

Why can they not elect to get off one or two stops before the end? Who is disadvantaged if this option has been carefully discussed over time with the family, and the doctor who has taken care and time to assess competence?

Good, open communication and time are the essentials. There need not be encouragement of such discussions, but certainly no discouragement. Through such discussions, problems may be uncovered which, if effectively dealt with, may resolve the request.

Underlying such discussions there needs to be a law that allows competent consenting adults, in this particular instance the frail aged, to request assisted dying. (In Victoria, there is a law that allows requests for assistance by competent adults with a progressive terminal illness with a prognosis of less than six months, whose suffering cannot be acceptably relieved.) Some residents of aged care qualify but many frail aged people do not have a specific terminal illness. (Frailty is not a recognised terminal illness, nor is age, but the combination is often predictive.)

Prognosis in aged care is sometimes simple, but more often unpredictable. So, although this law can apply to the frail aged, it is unlikely that many doctors will comply. Moreover, because of the relative isolation of most frail aged people, the majority will not be aware of its existence, and therefore will not make the necessary specific request for assistance.

The number of frail aged likely to use such a law would be very small. In the Netherlands, where assistance for such people has been available for more than 30 years, only approximately 0.15 per cent of all assisted deaths occur in nursing homes.

In Australian medicine a slow evolution of thinking has occurred over the last 30 years in attitudes to dying, but it needs to become more of a revolution.

People, a mass of people, create revolutions, but unfortunately those affected by dying do not have the energy or the platform to mount a revolution.

It takes a special form of courage and determination to face one’s own mortality. Most studies show that it is predominantly people of higher education and a very strong sense of autonomy, and a desire for control, who do so.

Facing one’s own mortality: Albert Camus wrote, ‘There is only one serious philosophical problem and that is suicide.’ Shakespeare’s Hamlet contemplated it in ‘To be or not to be’, and ducked, but he did not have a completed life.

Which brings me to the fundamental reason for this book. How often do you encounter someone with dementia in the community?

They commonly shun society because of their embarrassment at being unable to follow conversation or contribute sensibly. They spend most of their time in care – either at home or in residential aged care. And of course, they are largely silent – not entirely of course, but what they have to say is often irrelevant and unintelligible as time goes on.

Only those who have personally cared for or closely shared care at home have a deep understanding of this disease – more so than many so-called experts, who often only share short times with sufferers. They do not share the intimate moments of grief, boredom, pain and suffering, or the all-too-brief moments of joy. These moments need to be seen and shared to fully experience the dementia journey. They do not occur in the consulting room or the short consultation.

The frail aged are in a slightly more advantageous position, but, as Nicholas Christakos[…]” said “you do not see marches of protesters in wheelchairs descending on parliament.” It is very important to distinguish people with disability from frail aged people. You will see disabled people in their often-elaborate wheelchairs at Melbourne Symphony Orchestra concerts, or shopping in supermarkets. They demonstrate, despite their disability, a considerable degree of independence and they do vocally defend it.

The frail aged are taken out by carers in their wheelchairs – one can see them in supermarkets, shops and parks, but the involvement in the outing seems different – more passive, they are being taken out rather than demanding or organising the event. I understand it can be making a grave mistake in this generalisation, so I apologise for any offence to anyone to whom it does not apply.

I doubt that any of the frail aged cohort write letters to the editor, or even read a newspaper. They are not only largely hidden from us, but they are divorced from society.

Most bear their misery stoically. Their complaints to family create embarrassment and a sense of guilt. Providing assistance in dying in aged care is virtually impossible. The only legal alternative is voluntary cessation of fluids and food – not attractive to the frail aged, usually abhorrent to family, and poorly understood or supported by doctors or administration.

It is impossible not to ask the question: If a competent, frail aged person can end their life legally by deliberately dehydrating to death, why should they not have the more compassionate, and I would argue moral, right to voluntary assisted dying?

Do you think you are providing benefit to your frail aged or cognitively impaired relative when you commit them to residential aged care, particularly if they have expressed a clear and persistent wish not to enter that prison (of course, that is probably not how she or he would express it)?

It commonly happens because you, and your loved one, have no other choice, and over the past 60 years it has become culturally accepted without scrutiny. If you have recently visited someone in residential aged care, ask yourself: “Is this where I want to end my life?” If the answer is no, isn’t it time to start raising hell for an alternative, a choice?

Do you think it is caring to force a frail aged person against their will into a situation they regard as imprisonment?

Do you think people with early dementia, who still have decision-making capacity, should be denied the opportunity to make decisions about the rest of their dementia journey?

To effectively answer these questions will require some major cultural shifts.

The first is to alter our understanding of suicide as it is currently applied to the frail aged, and our attempt to prevent it at all costs.

The second is to recognise that confining competent frail aged people to prison against their will is not caring.

Third is to recognise that competent people can reach a stage in life of a completed life, and can be ready to die. We should respect them and be prepared to let go.

Fourth, if such a person with a completed life has reached their time to die, they should be allowed to choose to request voluntary assisted dying, in order to die peacefully and with dignity, at a time and place of their choice, surrounded by those they love.

Extracted from A Completed Life by Dr Rodney Syme, who died in October 2021 after a 50 year career as a surgeon and physician. The book is published by Dying With Dignity Victoria, with additional thoughts on the theme by Dr Nick Carr, Andrew Denton, Guy Pearce, Dr Helga Kuhse, Michael Bachelard, Associate Professor Cathy Henkel; with a foreword by Rodney’s children Robin, Bruce and Megan.