Choosing when to go…the human right that nobody can work out how to give you

It was a sunny day outside the ward when Evelyn told the medical student she longed to die. She wasn’t being melodramatic, or even particularly emotional when she said it. It ruined the student’s day.

When recounting the conversation later, as part of an assessed case report, the student was concerned that Evelyn was clinically depressed and spoke about his shock at hearing an otherwise endearing and sweet old woman fervently wish for death, and express some regret at having lived so long.

I have worked with and around older Australians for a fair chunk of my career, and in my experience there is a place for rational suicidality to be expressed. The front page story of the Melbourne Age today has brought some welcome attention to the topic.

It’s not easy to talk about, but to live with significant disability, cognitive impairment, in poverty with few living friends or relatives is no picnic. The generation who are now in their mid-eighties were born in the early 1930s and were teenagers during the War. They were young parents during the Menzies era and well into middle age during the excesses of the eighties. They have seen the booming prosperity of middle Australia, and the introduction of Medicare right at about the time they were going to begin needing it. Unfortunately compulsory superannuation was still some years off, and the age pension was only ever planned to be necessary for a decade or so, given that the average life expectancy in the early 1980s was early 70s for men and a few years more for women.

Nobody planned for so many of them to live this long, with so many chronic conditions.

Many older Australians have been trapped by the changing social determinants of health, and now have been living for twenty years or more on the old age pension, with limited family contact, and an increasing burden of chronic disease. Many have escaped being taken by cancer or heart disease, at least for now. Osteoarthritis, visual and hearing impairments and torn or wasted muscles combine to limit them physically and cut them off from the immediate environment. The fear of dementia, or of becoming a burden to others is mounting. For some in this predicament, the decision to seek residential care is simply too overwhelming, and they choose to trust their luck living alone in accommodation which is no longer manageable or even safe.

I’m sorry if this is depressing, but if you spend any amount of time around the public hospital system these scenarios are only too familiar. They are not often openly raised (even with the patients it must be said) because the issues are complex and painful to contemplate.

It is in this context that I can certainly understand how it could be that someone like Beverley Broadbent could come to a decision in the full and clear light of reason that she no longer wanted to live.

I also have to say that I wouldn’t be the one who would give her the barbiturates.

Much of the research from the palliative care field such as this study on patients with motor neuron disease, this one on a patient with locked-in syndrome and this review of life satisfaction in tetraplegic people tend to support the view that social factors affect quality of life much more than health-related ones. Among survivors of failed suicide attempts, many are subsequently glad they made it, and would not attempt it again. Impulsive or crisis-related suicidality would have to be strenuously screened for. Do we have those tools yet? Are they reliable enough to be ethically justifiable to use in practice?

It seems reasonable to conceive that the more physically disabled a person is, the more dissatisfied they must be with their life. The problem is that the research largely doesn’t support this view, at least not in the most highly disabled groups. It seems that you can’t make generalisations about a person’s quality of life just by looking at their medical records. This is why I begin to feel uneasy when cases like Beverley Broadbent’s are discussed.

I wouldn’t disagree that she has agency over her own existence, and I am very well aware of the reasons that an older person could make a rational choice for suicide, I can’t see how this can be legally provided without dramatically changing the thinking involved.

A whole new set of pressures would be brought to bear on elders who are already vulnerable enough. We would have created the right environment where many would feel obliged to move on and distribute their assets where this had never been an option before. Let alone those whose families might actually come right out and say that to them.

How could we reliably distinguish between a case like Beverley Broadbent, who is clearly making a long-considered decision with rational forethought free from mental illness or social coercion, and another who hasn’t been through the same emotional and mental journey, or who may be getting a nudge along? And what about younger people who have survived into their 40s and 50s with conditions like cerebral palsy and spinal cord injury? They are experiencing similar physical and social disadvantage to the elderly, but at a much earlier age. Would they be allowed to apply as well?

Much, much more research is needed about any proposal for voluntary ending of a life in the absence of terminal disease. As a humanist, I support the right to choose an early and dignified exit from intolerable circumstances. As a doctor, and a pragmatist, I have a lot of trouble thinking my way towards a legal and social framework in which this could be ethically brought about.

We need to have a mature conversation about this. A conversation which respects shocking and awkward points of view. One which safeguards the well-being and rights of people even as they are choosing how to die. A compassionate, empathic but clear-eyed and well-informed discussion.

As a community we are living longer with disabling conditions, and the ranks of the isolated and infirm elderly continue to grow by the decade. We need research to inform an ethical and legislative debate about assisted dying and the courage as a society to think about whether and how we try to make it happen.