A Completed Life

Introduction

Iam sitting in an old leather armchair in front of my pot-belly stove in my beach ‘shack’ on Phillip Island. A shack indeed it is. Built in 1949 by a retired merchant seaman, who did most of the work himself, including the electrical wiring, it has many defects. In 2001, I asked the builder of my architect-designed new Toorak house to advise on some minor renovations to the shack. He advised, ‘The only sensible thing to do with that place is pull it down and start again.’ I ignored his advice and later renovated the kitchen.

My beloved wife, Meg, whose family had long associations with Phillip Island, bought the shack as her bolt-hole from the pressures of city and domestic life, and has turned it into a refuge of tranquillity and beauty. She has filled it with her own artistic creations: paintings, drawings, glasswork, and stone and ceramic sculptures (together with some works by her sculpture mentor, Robert Langley, and a couple of my objects).

Behind the pot-belly, in front of the firebrick, is her magnificent octopus – a 20-tile (each 35 centimetres square) creation in blue, brown and black. The shack is filled with an extraordinary collection of marine artefacts: ship’s lights, glass buoys, shells, coral, starfish and seahorses. Everywhere there is something to delight the eye.

I am looking out the large windows into a virtual forest – trees planted and nurtured by Meg over many years. The grey-green olive, the brighter green of the flame tree, and the Australian green of the scarlet flowering gum and the bottlebrush. The Grevillea robusta forms a higher canopy before the towering presence at the back of the huge coastal banksias. This place is a veritable paradise of quiet peace, broken only by the sound of the resident birds, were it not for the frequent interruptions from Bach, Handel, Telemann and others.

This environment allows the right climate to distill one’s thoughts, sift the dross, and create the plan, the way forward. Often, in years gone by, when Meg was not her usual happy self, I would naively say, ‘Why don’t you do some drawing, that will make you more content’, only to be quickly told, ‘You can’t just sit down and draw, not if you want to do something good.’ There needs to be the right moment, the right mood, the idea, the spark, to succeed. It was only when I started writing that I understood what she meant.

It is here that I retire to write, to the peace and solitude necessary to construct thoughts and ideas, to let them float around, rearrange themselves in a considered way. I have spent this afternoon by the fire and now, warmed by the fire and some fine but not expensive cabernet shiraz, I am expressing some long-held thoughts.

I have had a fortunate life – a very fortunate life. I am reminded of the wonderful book of this title by A. B. Facey. Born into desperate circumstances, he was never discouraged, but worked tirelessly to improve himself and his circumstances. By sheer strength of character, he made a good life for himself, and assisted others to a better life.

Unlike Facey, I entered life with the proverbial silver spoon in my mouth. My grandfather and father were both respected Melbourne surgeons, so there was a sound financial base to our family life. Growing up, my three brothers and I were encouraged to develop self-reliance. After a very brief period of surveillance from my older brother, I took myself to kindergarten by two trams – from the age of four. At other times, my bike was my mode of travel; my parents never drove me to school, not even during the three-month tram strike just after World War II. Twelve years of cubbing and scouting was a wonderful training in resilience and individual responsibility. A fine education at prestigious Melbourne Grammar School created a love of learning, history, books and music, and was a great springboard for self-learning at the university and hospital. I was blessed with a very happy childhood.

But I was blessed with an even greater good fortune – to be born in 1935. This meant that I missed the worst of the Great Depression, was too young for the Korean War, and too old for the Vietnam War. I did live through the Cold War, but was never fearful of nuclear war, because I was sure both sides would not take the disastrous risk. The years after World War II saw the greatest advance of freedom in world history, the collapse of colonialism, the expanse in global wealth, and the creation of an enviable standard of living in Australia. And for a surgeon, this was 50 years of colossal development in medical science and surgical progress. I could not have picked a better year if I had tried.

Now, however, as I move into my eighties, I am forced to contemplate the consequences of the last 70 years of medical progress, together with outstanding changes in public health. Had I been born in 1870, I would have had a good chance of dying by the age of 50. Average life expectancy in 1900 was just that, but a century later it is 80-plus – and rising.

My essential health is excellent: blood pressure is 110/70, cholesterol is up (has been for 20 years), but I choose to ignore that. I do have some emphysema, but my lower limbs, despite some degeneration in the major joints, allowed me to undertake the Oxfam 55-kilometre walk (in 14 hours) through hilly forest north of Brisbane in 2015. My kidneys are sound, as is my liver, despite ignoring medical advice about my intake of cabernet shiraz. I do not have cancer and, as such, the odds of my getting it in a disastrous way are low, although I had lunch yesterday with a very old school friend whose wife was perfectly well three months ago, but is dying quickly now from a brain tumour. Will my good fortune hold?

While my likelihood of an early death is low, I have a number of portents of concern. My emphysema is associated with chronic sinusitis and bronchitis, with annoying sneezing and coughing, and a slowly diminishing breathing reserve. My hips, knees and back are creaking more; this, combined with my respiratory problem, means I could not possibly have done the Oxfam walk in 2019. I am continent, but my prostate tablet will soon be replaced by surgery, which I hope will eliminate my waking at night to pee, and subsequent insomnia. My hearing is good, but there is a background of tinnitus, which I can block out if engaged, but will it get worse? My eyesight is declining due to cataracts, which can be fixed relatively effectively – fortunately, I can hold off on this for now. Finally, I suffer from slowly progressive mild loss of memory: I read a lot of books, but a week later I have difficulty remembering the name of the book or the author. Mild cognitive impairment is its medical name, but it can morph into Alzheimer’s disease.

I am sorry to burden you with my many (minor) ailments, but I do so because my situation would be common among my peers. Prime Minister Malcolm Fraser was derided when he said ‘Life wasn’t meant to be easy.’ (He should have said ‘Life isn’t easy.’) If he had said this shortly before he died, with the rider ‘for us old folk’, he might have been applauded as wise. For it is true that life does become more difficult for everyone as they get older. It can certainly be the case that the ability to take pleasure can diminish, and the ability to be relevant in the world decays. Our world shrinks. But it’s not much good moaning – no-one will listen to you. You will be exhorted by younger people to pull up your socks, think positively, or be taken to the doctor to discuss depression. You are advised to ‘not do so much; take care, you might fall’ – all negatives, to which I reply that if I don’t remain active I will deteriorate more quickly. To suggest to family, doctors or carers that your life may be nearing completion, not because of terminal illness, but because of a lack of quality, is to be met with a lack of empathy and denial, by deliberate attempts to shut down the conversation, when all you want is good communication and some recognition of your point of view.

I am now 84. I wake at 3 a.m., due either to my recalcitrant bladder or to bedding that is too warm or too cold. I resist getting out of bed to pee, although I know I will not get back to sleep until I do, and the longer I wait, the harder it will become.

And yet I wait – after all, I am 84, and making decisions has become harder – it is easier to do nothing than to do something. And I know I must take extreme care in getting out of bed, so that I do not stumble and fall. Loss of balance was for me perhaps the first sign of advancing years.

As well as waking my wife, turning on the light only creates another stimulus that will awaken me further, and doom me to an hour or three of fitful wakefulness – during which I think. Wrong: I ponder, have thoughts that are fleeting and ill-formed. Thinking requires time and concentration; it is organised thought, ready to be clearly expressed in speech or word. It is hard work – so hard that some days I stare at my computer, almost in grief for the book I have been trying to write for more than three years, as the thoughts swirl, present but disorganised in my brain.

It is, of course, not just disorganisation, but also lack of energy, tiredness, ennui, or simply just easier to do things that give me some pleasure. This lethargy is complex, both physical and mental, and requires significant determination, mixed with dollops of self-contempt, to overcome.

Then there is the grog, dry reds predominantly, whose merits I enjoy liberally. Their consumption grows as the day advances, and I will continue to imbibe them despite the medical profession’s imprecations regarding no more than ‘two standard drinks a day’ – advice I have ignored for more than 40 years, without ill effect to date. Yet I do recognise the contribution that alcohol makes to this lethargy; as the day wears on, I wear down, finding it easier to do simple tasks, or just watch the fabulous view from my living-room window, than to chain myself to my computer and knock out five hundred words.

However, this effect on output is not obligatory. My hero Christopher Hitchens – the finest writer and commentator of my time – seemed capable of extensive boozy lunches, yet still got his immaculate copy in on time. Having a deadline must help; being retired and not dependent on the publisher’s cheque is not a spur to excessive activity. Christopher’s plaintive book Mortality contains much wisdom about dying, to which I will refer. Neither the booze, radical medical treatment, nor serious ill health stilled his pen, though his treatment significantly quietened his voice.

Since resolving to write this book, collecting material, and organising some thoughts, four years have passed. As a result, I now recognise a number of the facets of ageing based on personal experience, but I am not what one would call frail and elderly. That may yet be to come. However, the frail and elderly are the group about whom I wish to write, and I do so from a close acquaintance and an increasingly intimate experience, as my friends get older, and an increasing number of such people seek my personal advice.

Accompanying loss of energy is a loss of stamina (not the same matter), and diminishing mobility. The temptation to drive to the shops rather than walk has to be resisted at all costs. Balance and stability diminish, falls become an ever-present danger, and the plaints of children ‘not to do too much’ become harder to resist. Eyesight and memory decline inevitably, often without dramatic cause, and often without remedy. Our ability to use the object that has changed modern living more than any other – the motorcar – diminishes (particularly at night) and is lost. The world inevitably shrinks as one ages. As can one’s facility with that other essential modern invention, the computer.

We are all destined to die, in old age, unless some specific illness or accident claims us earlier. The reason is simple: we are genetically programmed to wear out, for our cells to be replaced less often and less efficiently, until degeneration rather than regeneration becomes the norm and we fade away. This applies to brain cells as much as any other, so our memory and intellect diminish, even without the advent of dementia. Most named dementias, such as the commonest (Alzheimer’s), are specific diseases, many with specific recognised causes. Alzheimer’s disease, although not specifically due to ageing, becomes increasingly common as we age. (Some 40 per cent of 90-year-olds are said to suffer from it.) It is surely the worst disease known to man. As I enter my eighties, my wife, three years younger, has developed Alzheimer’s disease. I am steadily becoming her full-time carer. Having studied this disease in the literature, and to a small extent in practice, I am now becoming fully aware of its sadness, cruelty and terror.

As people develop dementia, they lose their ‘voice’, by which I mean their ability to speak coherently for and about themselves. Not so obviously, so do the frail aged, who, although most can still speak, either cannot make themselves heard, are not listened to, or are ignored.

By coincidence, at about the same time I began planning to write this book, the journalist Michael Bachelard was developing a similar interest, commencing in 2010. He described his journey in The Sydney Morning Herald of 23 February 2018. His subsequent investigations and articles, particularly from 2016, have provided a steadily increasing volume of concern about our aged-care system. I believe his work and the response of the public to it have been instrumental in the establishment of Australia’s royal commission into aged care.* This will create an outstanding opportunity for the frail aged and those with dementia to be heard.

This book also attempts to speak for them.

Throughout this book, there are four areas in which I want to clarify my position:

• Voluntary assisted dying means the provision of medication by a doctor to a person with intolerable suffering, which they may then self-administer in order to end their suffering by ending their life.

• Suicide is not a relevant word to apply to such a well-considered, rational and justifiable action.

• Euthanasia means a deliberate injection, usually intravenous, of medications having the effect of causing rapid death. It is voluntary unless stated otherwise. I do not support such action unless a person is incapable of self-administration of medication.

• Patient is a word I have come to detest in describing a person seeking medical advice, especially at the end of life. They are a person who is dying, not someone in a doctor–patient relationship in which all the power lies in the hands of the doctor. As Professor Metcalfe stated in the British Medical Journal (1998), there exists a power gap between doctor and patient because of the former’s ‘high social status, expertise, health, territory […] There is an enormous gap between the power available to the doctor and that available to the patient.’ He concluded, ‘Perhaps we should grow out of the word patient – which divides them from us – and learn to call our fellow-travellers people.’ They are the determinant of their own best interests, and their fully informed, autonomous decisions must be respected. So I attempt not to use the word ‘patient’ unless the sense of a statement absolutely requires it.

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* Publisher’s note: the Australian government’s Royal Commission into Aged Care Quality and Safety tabled its final report in March 2021.

CHAPTER 1

The problems of ageing: Who is listening?

Today I chatted with an ageing man, who was 95 years old, about the end of his life – unusual, because such conversations are much more common with women. I think this is largely because women tend to outlive men by three to four years, meaning they are more likely to spend lonely years in old age, and also are prone to talk more openly.

I had known ‘Jack’ for about 15 years. He had been an academic philosopher in his professional life, and we met in an educational discussion group on occasions, initially when I was invited to address the group on ethics in relation to choice in dying. Our relationship grew when his wife consulted me regarding her terminal cancer. Her death struck Jack hard; a strong relationship of more than 60 years can create a chasm when it is broken. The support that two ageing people can provide to one another is more than the sum of two: take one away and the sum diminishes to less than one. Jack could not survive alone, and moved in to live with his daughter.

To reach the august age of 95 usually means that one has avoided all the common causes of ‘early death’. One has avoided cancer and heart disease, the commonest providers of death, along with stroke and other organ failures. Lucky, you might say, but on the other hand you now face a prolonged period of living with the accompaniments of ageing, with no prospect of a predictable exit.

Some ten years or so ago I responded to a computer program that claimed to provide one with an accurate life prognosis. I entered some medical and family details, and was pronounced viable until I was 98. Bugger, bugger, bugger, I said under my breath, because, as an experienced medical practitioner, I knew that I was going to enter the territory that Jack was now in.

As I write, at 83, without any serious illness, I know that the bloody computer was right, and all based on a very simple algorithm. I have just finished reading Yuval Noah Harari’s impressive work Homo Deus, and my wish to find untenable his argument about the future power of computer algorithms over mankind is shaken, damn it! I shall still, however, retain the choice not to have to travel to Switzerland at the age of 104, like Professor David Goodall, who in many ways is a likely mirror image of Jack.

Jack is not terminally ill. It is not possible to say how long he will live; he may outlive David Goodall, though I doubt it. David kept working academically until he was 102, thus retaining a purpose in life, and some enjoyment – until his organisation kicked him out of his office. His already slowly crumbling physical circumstances lost their foundations, leading him to echo Seneca’s wisdom that ‘a man should live as long as he ought, not as long as he can’. As a philosopher, Jack understood the meaning of existential suffering, and that quality of life, not quantity – at least for him – was what counted. He was reflecting on David Goodall’s decision.

‘What is bothering you?’ I asked Jack. His answer was not particularly lucid. He did not describe any of the classical physical causes of suffering, such as pain, breathlessness or paralysis. His principal symptom was tiredness, fatigue, but of a degree that limited his mobility, together with some minor joint problems. His appetite was poor; he had little desire to eat. He had lost his driver’s licence, which he regretted, although I suggested to him that this was probably wise, for others’ sake as much as his (based on my own slowly declining facility). He had no major disease diagnoses, and took no medications except a major antidepressant, the serotonin release inhibitor Pristiq, prescribed by his GP.

I was not surprised to learn this, because I knew that Jack had taken his wife’s death very hard. When we had been together with his wife and daughter discussing his wife’s distress, despite his support for her, his quietness impressed me. The sadness of a deep love is that the deeper it is, the greater the grief that follows its rupture. This, and subsequent discussions with his daughter, led me to feel that Jack had a strong grief. Grief is a natural response to loss and does not intrinsically cause depression, although if the impacts of grief are prolonged then depression may become an issue. However, Jack was not at all sure whether he felt better on the drug or not. I suggested he discuss this with his doctor. Many an antidepressant, once prescribed, is continued without good evidence of continuing benefit. A trial period off the drug, after a gradual reduction in dose, could do no harm.

Could Jack have multiple reasons for depression? Yes, he certainly could, if we are clear about what depression means. The venerable Dalai Lama, when asked what was the meaning of life, replied that it meant two things: first to have purpose in life (‘to do service’), and second to have pleasure in life. These are two intrinsic qualities that are challenged as we age.

In conversation, Jack had all the understanding and careful expression one would expect of an empirical philosopher. Age might have damaged his physical qualities, but his cerebral function was not significantly impaired. I doubt if he could have constructed and delivered an intricate intellectual presentation, but he could still think effectively, and argue on matters of consequence to his values and way of life. He had followed the story of David Goodall with great interest; Jack could have been David, but ten years younger. He understood the problems of ageing and of frailty, and had the same scorn as I did for young journalists, and, believe it or not, for some doctors, who described David as having no serious medical problem, other than a few scratches and bruises after he had fallen over in his flat and been unable to get back on his feet for nearly 48 hours. They said he was merely a little dehydrated – despite being 104 years old and subsequently confined to a wheelchair. It would be my contention that if you asked any experienced general practitioner the ‘surprise’ question with regard to Goodall, they would have answered ‘yes’ – the ‘surprise’ question being: ‘Would you be surprised if this person were dead within 12 months?’

Jack was not in the same circumstance as David, and the ‘surprise question’ did not apply. In summary of his distress, Jack offered the answer that it was largely existential, a summation that a philosopher could come to, but many others would be puzzled by. The Dalai Lama’s answer becomes increasingly relevant as we age. I suggested to Jack that he might have a ‘completed life’; after a brief interval, he replied very positively. After further discussion it was clear that he was ‘ready to die’, which meant that he would be content to go to sleep that night and not wake up. He was seriously considering whether it was ‘time to die’ – that is to say, whether the time for a decision had come. He was not yet sure.

I had helped his wife with terminal cancer a few years before. What could I do, what should I do, for Jack?

‘I want to die. Will you help me?’

This profound question was asked of me recently; it is no longer a surprise when people ask me that question, because I have been answering it in a variety of ways for nearly 40 years. But for most people it is a question they have never been asked, and for a somewhat smaller number a question they will probably never ask.

Some doctors are likely to be asked, although perhaps not always so bluntly. Seriously ill people often broach such a confronting matter obliquely – rather like asking someone one does not know at all well whether they would like to have sex. Oncologists and palliative-care doctors are more likely to be asked, because they are regularly face-to-face with seriously ill people, though I know some palliative care doctors who claim that no-one has ever asked them. You need to have good hearing and a receptive mind to hear such questions – and honesty.

Family members are not uncommonly the first recipient of this question, from an aged or very ill parent. The usual reaction is shock, and a negative response, unless this is a family in the habit of honest, open discussion of sensitive matters, and accustomed to future planning. If so, the parent might have appointed a medical treatment decision maker, and created an advance care directive.

If you answer categorically ‘no’ to this question, because of fear, shock or a sense of inadequacy, you will have lost the opportunity for a deep human experience. If you say ‘no’ because of fear of legal consequences, or a moral position, your justification is not so valid and you have equally lost an opportunity for growth. You should never just say ‘no’ to such a question: it is a serious question that deserves a serious reply. Equally, without a great deal of further knowledge you should not say ‘yes’. This question is the opportunity to start a dialogue, to find out what lies behind the question. There will be many scenarios, demanding a wide variety of responses, but ultimately one of those responses will be to say ‘yes’. Equally, it may be appropriate to say ‘no – not now’.

So, at the end, I come to the question: should doctors kill their patients? My answer is no, with one exception, which will evolve by the end of this discussion.

Should doctors help their patients to die? My answer is yes, in certain circumstances. I use the word ‘patient’ here, but reluctantly, simply because this is the context in which these questions are usually framed. I will discuss these two questions in two frames: first the competent person and second those who lack capacity.

Doctors have been helping their patients to die for centuries. Prior to the 19th century, they had very few therapeutic tools – believe it or not, patients were deliberately bled to remove ‘bad humours’, and leeches were applied for much the same purpose. The pain and suffering at the end of life were eased by the use of laudanum, a tincture of opium. Consider the statement of Sir William Osler at the beginning of the 20th century – ‘it is the doctor’s duty to ease death’ – and the judicial utterance of Justice Devlin in 1957, who echoed the same philosophy. With increasing frequency throughout the latter part of the 20th century, doctors have used medications, principally opioids and sedatives, to ‘ease death’. Today the ‘pump’ or syringe driver is frequently used in palliative care to deliver continuous sedation and analgesia to an unconscious patient, without fluids, until death occurs. The incidence of this practice at the end of life in the UK has been reported as being 19 per cent of palliative-care deaths, which is pertinent because the UK is regarded as providing the best palliative care in the world. In the Netherlands it is 12 per cent and in Italy it is 18 per cent. Surprisingly, there are no figures available for Australia, where the process is unregulated. Furthermore, not all of these acts occur with explicit patient consent. (In many cases the patient cannot give consent – they lack capacity.)

In 1991 Dr Timothy Quill, one of my medical heroes, published in the New England Journal of Medicine the story of his young dying cancer patient, Diane, whose end Quill assisted. In 2017, when questioned by ethicist Arthur Caplan about the relevance of the Hippocratic notion that doctors should ‘do no harm’, Quill said:

It would be difficult for me to construe addressing the suffering of a terminally