When my beloved grandmother died, she was a month short of her 94th birthday. It was a solemn and sorrowful day, but overwhelmingly it was a huge relief – for me, for everyone else who cared for and/or about her, and most of all for Gran herself.
Five-and-a-half years earlier, her eldest child and only daughter – my mother – had succumbed to cancer at 65, after an eight-month battle. A month before Mum died, Granddad, aged 94, took a tumble, hit his head, and died a week later in hospital, on Christmas Day 2006. At 89, Gran lost her husband of 67 years and her daughter, in three weeks. In great grief and fading health, she refused my offer to move in with her and allowed the authorities to move her – a gold-card Veterans Affairs war widow – into the RSL’s state-of-the-art nursing home on Collaroy Plateau.
The rest of her life was, not to put too fine a point on it, a wait for death – patient, valiant and courteous at first, then as the years wore on and her body and mind slowly gave out – increasingly wretched, fearful, cranky, miserable and confused. Having lost most of her once-extensive family and all her many friends of longstanding, Gran – a staunch Protestant Christian – prayed for death. If there were a pill you could take and a God compassionate enough to allow you to take it, she would have swallowed one the day Granddad died. But over the ensuing five-and-a-half years, as day after day despite her prayers God declined to take her and seemed, furthermore, disposed to inflict on her a level of suffering and indignity that became horrific, Gran lost pretty much everything else, too – her health, her modest pride, her sight, her mind, and, ultimately, her faith.
No one deserves the misery my grandmother suffered in her final years, and it’s a national embarrassment that the generation who survived World War II, picked up the pieces and built us our sturdy national economy has been so ill-served by a system specifically intended to give them a peaceful old age and a good death. I visited my Gran every week through those years, and I moved on-site for the last nine days of her life.
I saw a fair bit of nursing home life and I can tell you, if there were a pill or a potion you could take, those places would be transformed: there’d be pill-popping parties every month and an altogether fresh air of celebration, jubilation and satisfaction. Lots of people would never use the privilege, but they’d be happier just for having it. Lots of people would swear they’d never use it, then – like new mothers in labour – would see the light and call for it when they realised just how agonising the process can actually be.
What’s agonising about nursing-home life is not just the dragging monotony of a painful, fretful, humiliating, corralled decline. It’s the fact that you’re imprisoned in a bureaucratic system designed to keep you alive as long as possible, no matter how poor your health, how ghastly your existence, how non-existent your prospects. It’s the inescapable sense that everything that once defined you, anchored you and gave you pleasure all your life is gone but you’re not; that the place you live in is full of dead men walking – or not walking – and you’re one of them. In the case of the conventionally religious like my Gran, it’s the rock-solid belief that death by active personal choice is wrong that does much of the damage. But a few years in a nursing home can be quite literally soul-destroying.
I remember my grandmother as a youthful, elegant, vivacious and attractive woman. From her girlhood she loved to dance, and she played tennis in her prime and bowls later, and was physically active well into old age. Even when she was reduced to using a walker, I remember her hobbling determinedly round and round the circuit of the nursing home, maintaining what fitness she could. By the time she died, though, my poor Gran was completely crippled, her legs twisted stiffly to one side at the hips and dreadfully withered, her left arm useless and contracted in a tight, painful, ugly spasm after her last stroke. She was blind but for light and shadow, had limited movement in her good arm, couldn’t tolerate many foods and was plagued by a variety of skin problems.
For some months she was on a medication whose side effects included itching so violent that she would scratch till her body was flecked with blood. Her toilet functions were no longer under her control, and she wore napkins day and night. Her spasmed hand tended to develop fungus and skin-rot in its clammy creases, so she wore a sheepskin pad that hooked over her thumb and strapped round her wrist. By the end, her mind had long since given out under the strain of grief, confusion, humiliation, longing, and religious crisis.
I’m sorry; this is obviously not a pleasant read, but I find myself obliged to detail the reality of her last years with a fierce forensic insistence precisely because we are so reluctant to face this issue. In the course of our time together I learned many things from my grandmother, mostly through her gentle positive reinforcement. But it is this last, uncharacteristically bitter lesson I want most urgently to pass on: leaving it to God to choose the time of your death – even if you are blamelessly sweet of nature, well-loved and respected, comfortably well off, and cared for in the finest facilities – will not ensure that your death happens in reasonable good time. In purely medical terms there is sound cause for this, but the consequences create a large and grave risk that requires a legal counter-protection.
The medical system defines “life” as a set of physiological symptoms, but we live it as a set of experiences, the last of which is the process and moment of dying. For most people this won’t happen at home, so a health system that doesn’t acknowledge, accommodate and facilitate that final part of life in a manner beneficial to the patient is failing its principles as well as its patients.
But it is surely the physician’s most difficult job to navigate the fraught territory between these two paradigms, the physiological and the experiential, where his or her responsibilities may shift radically under the precept to do no harm. Harm in this context is generally – and logically enough – interpreted to include killing. But harm is defined as much by the experience of its victim as by imposed criteria, and for anyone near to death there may well come a point when there is more harm in living than in dying. Before the point at which the frail elderly begin deliberately throwing themselves out of bed, a legal assisted-suicide option is a crucial human right.
In my Gran’s case, despite her fervent wish for death, the fear of God stayed her hand until it was too feeble for the task, and she was forced to hold it out in vain supplication to people who wanted to help – with either assistance or spiritual reassurance – but who had nothing adequate to either task. My grandmother should have had a peaceful death in full command of her faculties, and well before pain, debility and disillusionment made a mockery of her life, her character, and her service to her family and the nation. Instead, her faith and the submission it imposed – supported by the lack of legal options – imprisoned her for years in a wretched oubliette of the soul, tormented by a moral code that pushed her to conclude she was alive and suffering because she had done wrong.
In the end, what did my Gran more harm than anything was the Church’s sanction against suicide, the “sin” for which you never get the chance to repent. But when the Church’s fear of change causes it to fail believers on a social justice issue, it is the State’s duty to pick up the slack.
The Rights of the Terminally Ill Bill, recently defeated 23-13 in the NSW Legislative Council, could not have helped my grandmother, who did not elect intervention until the early stages of dementia were evident. But it is the first, most desperately needed step toward a society that does not allow its extraordinary advances in medical care to enforce an extended, exquisitely lonely, increasingly unpleasant half-life for those dying of old age. Many of the boom generation have seen their parents decline in nursing homes and are anxious not to end up there themselves. The problem is not the quality of care, but the unresolved tension between the power of medicine and the brute facts of mortality.
Old age is a terminal illness, and the law will eventually have to draw an arbitrary line at an age beyond which it is legitimate to decide that one no longer wants to endure a medically slowed decline. Radically disabled, terribly isolated, heavily medicated and acutely uncomfortable is not most people’s idea of a way to spend your final years. The need for a better death is not going to go away.
The 70-80 per cent of the population that has supported the rights of the dying in polls over the last ten years is only likely to grow. When the bill eventually passes, the authoritative voice of the State will stand in opposition to that of the Church, offering to the dying not only a more reasonable option but also a more compassionate morality. In the meantime, I hope the more compassionate churches will lobby Christian politicians more strongly, because effective action is needed against the blindly fearful and deeply unchristian attitude of the Australian Christian Lobby (ACL) to this issue. The ACL’s influence is considerable: despite the conscience vote, not one Coalition member supported the Rights of the Terminally Ill Bill. Perhaps none of them have ever been carers.
One of the great difficulties with this kind of story is that those who endure it do not live to tell it. I hope my Gran, who never liked to make a fuss, doesn’t mind me telling it for her – for the sake of everyone who has ever found themselves, or may in future find themselves, in need of the means to a good death. She’d snort at my saying so, but my Gran was a saint, right to the end. If assisted suicide had been a legally and socially sanctioned option during Gran’s decline, no one – least of all God – could or would have condemned her to a fate worse than death.
Editor’s Note:
Euthanasia (assisted voluntary suicide) focuses primarily on those with a terminal illness, those living with extreme pain and suffering, carers and loved ones. The issue, however, is broad in scope. Advances in medical technology and palliative care practice mean, increasingly, that many of us are living longer lives. Whether quality of life can be maintained in this context is a vexed question.
TheSSH editors hold diverse opinions on the prospect of legal euthanasia in NSW. We ask: How ought quality of life be measured? Is personal autonomy/“ability” a sufficient measure of human life? What kinds of additional (social and psychological, direct and indirect) pressures would legal euthanasia exert upon older and less able people? How might euthanasia legislation inevitably be abused (in regards to inheritance, for example)? Is it fair or moral to ask another (doctor and/or family member) to share/bear responsibility for ending my life?
Conversely: Is it conscionable to witness the extreme suffering of a loved one, the limitations of pain management and relief, and yet hold to mere or outdated principles? Should a person facing interminable suffering not be free to choose a dignified death? Is withholding or withdrawing treatment really so different from administering a drug to end a life of suffering? Is administering powerful pain-relieving drugs (resulting, ultimately, in loss of consciousness) really so different from administering a drug to end a life of suffering?
The SSH invites further consideration of this complex issue. We will publish articles from various perspectives.
