Dying cannot be made good or well managed if there is no recognition of dying.
Allan Kellehear, 2007
Dying is a solo act.
Marie, my mother, 2006
Forty years ago, Simone de Beauvoir wrote controversially about the ‘conspiracy of silence’ that afflicts old age. In her view, the old were ‘outcasts’, nursing homes were ‘houses of death’ and ageing a ‘disagreeable’ subject. Today, not much has changed – despite new technology, complex knowledge and a growing population base to consult, many elders are still viewed (and treated with) contempt. Body tending of the elderly – aka cleaning and grooming, one of the most important aspects of elder care – is regarded by many in the industry as a low-status task. Professional care is timed and costed, risk-managed and sanitised of any personal elements. The argument often used to defend regimented and utilitarian care is simply that it is better than no care at all.
In the public eye, elders are rated on a sliding scale of dependence. This biologically driven perspective – that bodies are valued for their functional abilities – infers pointedly that leaking bodies are failed bodies. Unseen, unknown, unheard, many elders find their views are disregarded. To receive care, they must submit to a treadmill of health regimes and body surveillance, forsaking their right to decide how – and if – they wish to live.
The elderly confront us with a formidable challenge: to accept them on their terms.
This was a lesson driven home with force following the hospitalisation of my mother, Marie, in April 2006. Initially, Marie was diagnosed as having a persistent bout of flu. Night after night, she coughed relentlessly. Prescribed antibiotics did not offer relief. Marie’s chest ached. She could barely speak. She did not sleep. In desperation I called the GP again, who rushed over, took one look and changed his diagnosis to pneumonia.
I burst into tears and asked the doctor if my mother would die.
‘Not today. But maybe tomorrow,’ was his honest reply.
As we later learned, it was congestive heart failure. Marie’s lungs and heart were drowning in excess fluid. Marie’s ‘death rattle’ – the sound of gurgling fluid, heard each time she took breath – signalled that at some point she would be unable to take in oxygen and her system would shut down. Her illness was assigned four doctors and a revolving door of nurses. Her body was bound to a panoply of tubes, monitors, intravenous feeds and other apparatus. Her life, now the property of the hospital, was being redefined by infirmity, pain, stigma and disembodiment.
The question of whether life, however impoverished, is more important than death came to a head twenty-four hours later on Good Friday. My partner and I stood at the foot of Marie’s bed while Dr X and the other unit doctors formed an entourage around it. Dr X initiated a discussion about the odds of Marie dying. Marie was awake and lucid. It was difficult and painful for her to speak, although she did participate in the discussion. No-one actually spoke the words ‘dying’ or ‘death’; instead discussion focused on ‘circumstances’, ‘likelihood’ and ‘preferences’.
As de Beauvoir and others have eloquently documented, dying in hospital is rarely swift or dignified. At the time, we naively thought it had to be better than dying at home, or alone, or abandoned, without a soul noticing. So that was how a discussion about end-of-life medical wishes was conducted – in a four-bed ward, in full view of other patients. There was no privacy. Seven people were involved in a discussion: death by committee consensus. As a result, ‘likely futility’ was the reason given for sign-off on Marie’s ‘Not for Resuscitation’ order.
We went home, unable to sleep, waiting for bad news. It became a regular routine, while a war waged – for weeks – between the doctors and Marie’s illness. Every time the doctors thought they had ‘won’, another part of Marie’s body broke down. During this, I witnessed a progressive estrangement of my mother’s self from her body: a series of events where Mum became Marie, then Mrs Vowles, then ‘the patient’. The diuretics used to drain fluid wasted her kidneys, which were failing. Her heart was pitifully grinding to a halt. To witness the contortion of her chest as she struggled for air left me feeling distressed (for Marie) and angry (at those who felt intervention was in her best interests). Diabetes was causing carnage to all functions. She developed a chest infection. Delirium, caused by a melange of drugs, made her steadfastly believe that she was ‘at the supermarket’ and the nurses were ‘checkout chicks’.
She was covered in unexplained bruises; fluid was drained daily; oxygen was pumped into her nose; urine, blood and sputum leaked and oozed from orifices. Marie sobbed every day. She relentlessly prayed that God would take her. She begged the doctors daily for a needle to end it all. Pressure sores were forming on her once milky skin. She barely ate. Her tongue was swollen, dark red, and eventually split and bled profusely. Dr X greeted her and grinned, adding that she was doing well. Marie did impersonations of him by grinning like a Cheshire cat and then declaring he was ‘an idiot’ and ‘shit-scared’.
In her medical file she was annotated as a patient ‘who wanted to die’, ‘was miserable’, who ‘refused’ showers, who ‘refused’ to get out of bed, who ‘refused’ physiotherapy – a person who was not conforming to ward protocol. The word ‘refused’ spat out from the pages, a value judgement that did not recognise or authorise the crisis in her body.
Further insult followed. Most of the nurses weren’t empathetic: I arrived to find them bullying her, dragging on her limbs, shouting abuse. They regularly left her lying in urine-soaked sheets. Soap scum was not properly rinsed off her body. The night-shift nurses hid her buzzer behind her head, making it impossible for her to call for help. She was served food she could not chew. When I complained to authorities about staff rudeness and cruelty, I was annotated in clinical notes as ‘very difficult’ and ‘rude’. Only one nurse had a change of heart, and later returned to apologise and thank me for reminding her that she was dealing with a person, not a number.
So much was expected of her in this destitute state. In a ward that boasted a fast (read: less than two weeks) patient turnover, Marie was an embarrassment. She had been there for close to three weeks and her status hovered between palliative care, death and rehabilitation. It seemed odd that the medical team, who had signed off on a ‘Not for Resuscitation’ order, was adamant that Marie would not die on its watch. They grew more irate with her failing, recalcitrant body, until one morning a doctor incredulously admonished Marie, ‘Aren’t you ever going to get out of bed?’
In their eyes, Marie was not doing enough to get better and was therefore making everyone’s life difficult. To any onlooker, living that way was existing in a dead zone. Non-maleficence – that is, not allowing the person to suffer or die – involved employing whatever means necessary. Yet from Marie’s perspective, intervention was violation, and entrenched her belief that life like this was not worth living. She had, however, no choice: her hospital admission implicitly denied her the right to make a decision about her health.
When is it best to let nature take its course? Marie, like many elders, was voicing her desire for death. Her readiness to die was not recent but had developed over many years of daily struggles.
Following her quadruple bypass in 2003, every bout of illness had further whittled Marie’s will. For a few months, we lived together. It was a formidable test for both of us. Marie described meals as ‘just food’; sat in her bedroom with the lights off and blinds down; barely engaged in conversation; had anxiety attacks if I left the house for longer than twenty minutes. Physiotherapists made home visits and had limited success in encouraging her to walk more than five metres. Her counsellor kept cancelling appointments until he finally advised us that he couldn’t help her. As an observer, it seemed that the ‘cures’ – activities, people, exercise, drugs – were not working. Marie wanted us to see her infirmity in situ, and the limitations it imposed. She knew her boundaries. Who better to determine boundaries than the person whose life is constantly reshaped by infirmity and decline?
In late 2003, Marie moved into her own flat. Her friends lived in the same building. We thought the move would motivate her to take interest in her life. Her quadruple bypass had, however, left her spent, angry and resentful of all the things she had lost, such as health, home and the ability to travel on her own. Attempts to interest Marie in visiting friends and family were wanly received and often rejected. She just didn’t see the point. Hers was not simply the view of a ‘depressed’ person. In truth, her new life was less than satisfactory. There were people visiting frequently, there were many things to do, but nothing could assuage the grieving for her old life. She was paralysed by loss, physical and emotional: what to do with it, how to live with it, how to let it go. It was a point she made frequently. Every attempt to restore order and a regime, she sabotaged.
Looking back on what happened, I, like so many others, should have sensed when to back off, to accept that her life did not belong to us. Perhaps she might have been happier left drumming to her own beat, whenever she wanted, however discordant it sounded to others.
The worst was to follow. Marie’s closest friend of forty years was an ex-theatre nurse called Maggie. Maggie’s brand of wellness had involved a stiff (read: large) shot of whisky every night before bed, eating ice-cream, screaming herself hoarse while watching football in Marie’s flat and lots of walking. She’d never discussed the large bandage covering her weeping shin that she dressed every day with her textbook-perfect wound-management technique. Marie worried about it, but Maggie silenced her with matron-like curtness: ‘What I have, stays with me.’
The bandage grew in size and became more ominous as the months progressed. This correlated with Maggie bunkering in her flat, alone, a prospect that previously, given her habitual ‘free- range’ roaming, would have driven her mad. Hours before they took Maggie away, Marie sent me on an errand to buy her some Lucozade. I knocked on her door, and she greeted me in her undies. Illness had left its stigmata. Her eyes were raccooned with fatigue. Pale words tumbled out: ‘Try and get better. If you can.’
Maggie was dragged screaming out of her flat – against her wishes – and transported to hospital late on a Friday. When Marie called, Maggie firmly told her not to visit. Yet a mutual friend of theirs – an aged-care nurse – ignored that last wish. On display in a public place, clad in a sheer gown that barely covered her now-wasted figure, and waited on by strangers, Maggie was seen at her most awful and exposed. Her kidneys had failed. She died Monday morning. It was a demeaning death, made more so by the violation of her wishes.
Marie’s loss was immense. I arrived to take her to Maggie’s funeral. It was overwhelming how much effort Marie made: she had struggled to pull on a pair of stockings (something she had not done in years) and was hobbling in high heels. There were scuff marks and rips in her tights, where she had wrestled them with her arthritic hands. Marie wore her ‘nice’ suit. Her face, however, was bright red, a sign of distress. We went to the funeral service, an antiseptic affair, and were reminded of how Maggie asked the funeral director for the cheapest coffin possible. Marie sang the hymn ‘Nearer, my God, to Thee’ in her frail high-pitched voice. Hardly anyone else was singing, but it made her all the more defiant in paying her respects. It was too much, death everywhere: not ‘good’ death but heartbroken, tawdry death.
I began sobbing so loudly that the organist, without missing a note, handed me a box of tissues.
For months afterwards, Marie would lament: ‘Where’s Maggie?’ She would pause for a moment and then add, ‘Gone to Jesus.’
After the funeral, Marie began befriending ‘wounded’ people – someone who was blind; another who had a chronic speech impediment almost impossible to decipher; and one who was deaf and shook terribly from Parkinson’s disease. They congregated daily in Marie’s flat, engaging in craft projects, sharing materials, gossiping and monitoring each other’s health. Marie held court. Subconsciously she had surrounded herself with people who she classed as more frail and vulnerable than herself.
One Monday, the blind friend was found dead in her flat – she lay there for days – after bleeding to death. It deeply rattled Marie. She kept talking about how ‘no-one knew for three days’, about her fear ‘of being left alone to die like that!’
The woman who had Parkinson’s disease was appointed a case manager who relocated her to a home, zombied to the eyeballs on drugs. Marie tried several times to call her and even sent her presents, but was repeatedly told, ‘She’s busy, and we’ll let her know you called.’
Despairing, the craft group disbanded.
Marie became circumspect. She would talk about the pointlessness of such prolonged misery; watching people die one by one; checking the obituaries for familiar names; face-to-face contact shrivelling as friends grew frail, lost their minds, went into nursing homes.
The descent into madness was often slow and poignant; dying was zany, macabre, practical and incomprehensible. Death was something to welcome. Marie’s friends planned their funerals with their pension money; joked about watching over people when they were ‘gone’. Some of the residents black-humouredly referred to the premises as ‘death row’. Death is hard to ignore when it lives inside you and around you all the time.
By the time she entered the acute ward in 2006, Marie’s chances of dying were high. But an encounter with Father V, a Catholic chaplain, offered a different perspective. Blooded in the school of ‘firm but fair’, he had seen death up close and had a healthy respect for it. At first, Marie spent a long time talking about how awful her life was, and that she was glad he visited because he could give her a blessing for the dying. He listened without interrupting. Then he replied, ‘I will not give you the Last Rites as I believe you have things to still sort out. I will give you a blessing for the sick and infirm.’
Marie blurted out, ‘I am dying.’
He was adamant. ‘You are not ready yet.’
They debated this vigorously for thirty minutes, a liberating discussion about the search for meaning in dying and death. He did not flinch at Marie’s prickly questions or accusations. He answered her with the gravitas of his faith. Marie was animated and engaged. When argument and laughter finally left her spent, he blessed her.
Shortly after, in May, Marie transferred into the geriatric rehabilitation unit. This new clinical home reeked of social death – old people, motionless like lizards, apathetic and numbed. It smelt of leaking bodies and bleach. Fluorescent lighting bathed everyone in a jaundiced hue. Upon arrival, Marie stared stonily at the tired, caramel decor, white cots and threadbare sheets, while we crammed her belongings into doll-sized cupboards and drawers.
That afternoon, an unending barrage of professionals visited Marie: the social worker, physiotherapist, occupational therapist, gerontologist, head nurse, shift nurse, psychiatrist, the orderly who handed out menus, and the nurses specialising in wound dressing. Each person welcomed her as if she was a guest at a posh hotel, while ignoring Marie’s mounting distress. When the last professional left, silent, hot tears tumbled down Marie’s cheeks. I held her and whispered, ‘Two weeks and you will be out of here.’ Her horror and fear, her acute longing for something familiar, her former world, was distressing to see and hear.
It was at this ‘heartbreak hotel’ where Marie had an epiphany. By observing the passive decline of other elderly patients, she learnt her chances of recovery were greater if she took control. Every day she would walk with me, increasing the distance to build up her stamina. She willingly consumed my daily goodies: yoghurt, vitamins, fruit and homemade soup. Her fear – of resignation to a slow, clinical and ignominious death – kickstarted her desire for wellness.
Two weeks later, Marie was discharged from the unit. It took five gruelling months to restore Marie’s health, which had been pounded in hospital over the course of five weeks. From a medical perspective, the treatment for her congestive heart failure – the reason for her admission to hospital – was a success. She was no longer ‘dying’ or ‘drowning’ in fluid. But Marie inherited a brace of problems such as vitamin deficiencies, suicide ideation, muscular weakness and mobility issues, chronic rash, a bleeding tongue, bedsores and ulcers, which made a mockery of the notion ‘do no harm’. Marie’s indignation was perfectly justified.
Today, Marie and I have grown to accept her life of decline. In many respects, Marie is more content, and the reason is her decision to reject further invasive treatments and interventions. In the process, Marie has embraced living one day at a time, as fully as she can. That might involve sleeping in, or spending all night cooking, or finishing her crossword. She might shower at 4 pm, or midday. An armchair traveller now, she is a devotee of any racy Friday night SBS programming, football, debates and medical programs, and often discusses them in (graphic) detail. She hates her wrinkles but thinks Botox is stupid. Her frail body is no match for her unbounded curiosity. There are no imposed judgements, quotas, goals, decisions or expectations made of her. Both sides of all matters are explained clearly so that Marie can make an informed choice. As an elder, she has earned the right to live her life her way.
Moral philosopher Martha Nussbaum observed that in defining a ‘good’ human life, there are two ‘thresholds’ of capability to consider: a threshold where one’s function is so ‘impoverished’ that it ceases to be human at all (for example, someone in a permanent vegetative state); and another threshold – often the focus of public policy – where one can function at a bare-minimum level, enough to be judged as human existence but not to be thought of as living a ‘good’ human life. Poor dental care, an inability to afford nutritious food, frailty or overmedication can dramatically contribute to an elder’s decline from a state of wellness or minimum level health, to a form of existence that cannot be reasonably called a ‘good’ human life. This nuanced distinction between ‘life’ and ‘existence’ is critical, and largely ignored, in elderly care policy and practice.
Sadly, the current view of elderly care asserts that interventions are appropriate and ‘right’ once people demonstrate they are no longer able to ‘do’ things. The term ‘intervention’ has strong adversarial overtones; it implies the necessity to interfere; it upholds the validity of the ‘expert’ opinion; it demands compliance. It assumes that the expert understands how the client/patient experiences their infirmity/decline. It demands that the patient/client trust the expert on the basis of their status as a ‘moral guardian’. These are problematic assumptions that raise many questions about the ethics of the contract – the motivations, standards and agendas of those offering care – and whether such care actually addresses and values how elders wish to live.
The elderly have great insight into dying and death; they are on its runway every day. They have amassed a lifetime of knowledge, and while some may regard their bodies as symptomatic of decline, their spirit is remarkably stoic and tells another story, thanks to surviving wars, famine, the Great Depression, chronic illness and the deaths of loved ones. Few of us can boast such a portfolio of experience. Science has yet to recognise the potential of such knowledge. Anecdotally, the elderly do feel and care about themselves and others. They can lead happy lives without the accoutrements we believe necessary – but only if we change how we treat them. Acknowledging the experiences, choices and autonomy of our elders will not only help them suffer less but may also guide us in our journey towards death.
Patricia Gillespie is a writer and editor who has put her career on hold to care full-time for her mother. She is also a PhD student at the University of Melbourne, focusing on aged care and elder rights.
© Patricia Gillespie
Overland 202-autumn 2011, pp. 38–44
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