We used to have a common script for dying. The great French historian Philippe Ariès coined the term ‘tame death’ to describe the way people died in Europe during the thousand years before the Industrial Revolution. Death was feared and regarded as a blow to the community, but the dying and their attendants knew how to do it. Death was familiar, death was swift, death was acknowledged and death was public. When death was no longer ‘tame’, when it became hidden and medicalized, we found ourselves lost and disorientated, without a script to follow. We have banished death so comprehensively from our thoughts that one of the most famous artworks of the last twenty-five years, Damien Hirst’s shark-in-a-tank-of-formaldehyde, is pithily entitled ‘The Physical Impossibility of Death in the Mind of Someone Living’. This is a modern take on Freud’s aphorism: ‘It is indeed impossible to imagine our own death; and whenever we attempt to do so, we can perceive that we are in fact still present as spectators.’
We have been forced to write our own script. Illness memoirs and blogs written by the dying have a popular appeal because people want to know how to compose this script. There is, however, something studied and self-congratulatory – even narcissistic − about all this, as there is with the modern clamour for ‘death with dignity’. I recall that when my children were born in the mid-1990s, I used to joke that we, the new parents, with our childbirth classes and nappy-changing fathers, behaved as if we were the first generation ever to have babies. I sometimes feel the same about contemporary approaches to death. We’re the first generation to ‘do’ death on our terms. We are blogging, penning memoirs and newspaper columns. Those dying young enough to understand social media are dying online: there is a cacophony of voices, a thousand scripts you can choose from. Memorial sites to the dead appear on Facebook, where they are known as electronic graves. But how much of this stuff is read by those who live in the Kingdom of the Well?
Those well-intentioned and earnest folk who write and lecture about death and dying hold up the ‘good death’ and ‘death with dignity’ as their ideal. I support their desire to treat pain properly and to protect the dying from futile treatments. But I sometimes wonder if what they want is to re-tame death, in a modern way: to strip it of its awesome grandeur, to turn it into a process that can be managed, policed, workshopped – the care of the dying man reduced to trite formulas. Philippe Ariès wrote in the early 1970s:
A small elite proposes not so much to ‘evacuate’ death as to humanize it. They acknowledge the necessity of death, but they want it to be accepted and no longer shameful... They propose to reconcile death with happiness. Death must become the discreet but dignified exit of a peaceful person from a helpful society that is not torn, not even overly upset by the idea of a biological transition without significance, without pain or suffering, and ultimately without fear.
Henry James called it ‘the distinguished thing’, but death, for most people, is banal, anti-climactic. The End is robbed of its significance by our new hospital rituals. Most people who die in the hospital where I work do so after several days of syringe-driver-induced oblivion. As in most other momentous events of human life, the professionals have taken over. Ivan Illich, that turbulent priest and philosopher, argued that dying was yet another aspect of human life which had been colonized and taken over by medical busybodies. We need to reclaim death from the experts, to make awareness of it part of our everyday lives, to de-medicalize it, or, at least, to reduce over-medicalization. I do not suggest that we can magically rid ourselves of the fear of it, or that we should try obsessively to control the manner and timing of it. Death is grand and mysterious. It cannot be hidden away; the doing of it should not be reduced to a set of tried and tested manoeuvres.
Cork, in the south of Ireland, 1972 – I was twelve years old. My mother woke me very early, maybe at 5 or 6 o’clock. She told me that a neighbour, a boy of twenty-one, had been killed in a car crash. His parents could not face the visit to the morgue to identify the body, and this task was delegated to my father, who was a close friend. I attended the funeral with my parents; my two younger brothers were left at home. The coffin was open. His battered face was still handsome, but even I could see the undertaker’s work. Grown men were weeping. There was no consolation, only anguish. His mother mourned him for another forty-two years, the last ten in the mist of dementia. She went on to bury two more of her five children. One of the unexpected benefits of dementia was her belief that her favourite son was still alive. She died at ninety.
My mother’s close friend M. gave birth to a baby boy around the same time I was born. They were in the same ward in the maternity hospital. After a series of chest infections during infancy, the boy was eventually diagnosed with cystic fibrosis. In the 1960s, children afflicted with this condition rarely survived beyond their teens. The boy didn’t live to be a teenager. M. still sends me a card for the big birthdays; my milestones a reminder of her lost child.
Essex, 1980 – I had a summer job, working as a nursing assistant on a geriatric ward in a run-down hospital on the outskirts of London. The ward staff were a mixture of the good and the not-so-good, the hard-working and the lazy, and the patients were given as much comfort and care as the circumstances allowed. The ward sister was a genial, slightly mocking lady, who would often give me a gin and tonic after a particularly hard shift. The doctors attended infrequently, and showed little interest. The consultant appeared perhaps once a week, and was guided quickly around by the sister, who made sure he took no big decisions. Most of my patients were elderly men with dementia. My job was to get them up, wash and shave them, and feed them, a truly Sisyphean task. It was a good experience for me, but a miserable life for my patients.
I noticed that dementia took different forms. One man retained a degree of insight into his affliction. He put a great deal of effort into his appearance: he was ‘dapper’, in the way that working-class men of his era were. His hair was brillantined, he had a little pencil moustache, and wore a silk dressing-gown. He maintained a public carapace of jaunty, cockney cheerfulness: ‘Musn’t grumble!’ He had lost one of his legs (below the knee) to smoking-related peripheral vascular disease, so he was prone to falling. Longing for death, he died after a fall. He had no visitors.
Another of my men told me the same story every day: he had been a driver for the British army during the war, and on one occasion he had driven Winston Churchill and King George VI. His eyes would fill with tears as he recalled it: ‘The King of England and the greatest Englishman what ever lived!’
My oldest patient, Tom, had fought in the Somme: you could still feel the copper wire that had been used in the field hospital to bind his shattered knee. His only remaining pleasure was smoking, although he did enjoy the sensation of being shaved. In those days, smoking was allowed on the wards, and one of my jobs was to roll his cigarettes and light them for him. I fed him slowly, spoon by spoon, much of which he spat out. This task created a strange, intimate bond between feeder and patient: if he was in a good mood, he called me ‘good old boy’; if he wasn’t, he called me a ‘fucking c***’. Because he was somewhat deaf, the only way I could communicate with him was to affect a cockney accent. He was indifferent as to whether he lived or died. He had a large and devoted family, who visited frequently, and spoke to me every day about him. They were stunned by the decline of their patriarch. He died one night in his sleep; I was off-duty and learned the news when I came in for the early shift. It was imparted by the ward sister with her usual note of rueful, slightly indifferent, resignation. There was some discussion, I recall, about how the copper wire in his knee would cause problems with cremation.
An elderly retired doctor lived with his wife in an annexe of the nurses’ home. He had worked for many years as resident medical officer at the hospital, never climbing any higher on the career ladder. He liked to chat with me and my two classmates who had come with me to work in the hospital. He boasted one evening, in his cups, of killing off many ‘hopeless cases’ by injecting them with large doses of morphine: ‘Best thing for the poor buggers.’ Harold Shipman, too, killed his patients with morphine, although this drug is not especially effective for the task: the Dignitas clinic in Switzerland, which knows a thing or two about killing people, does not use morphine.
Cork, 1984 – I was the Senior House Officer on call that day for General Medicine. The switchboard put through a call from my youngest brother, phoning from home. My father, aged seventy-one, had collapsed outside the house, while walking the dog. My brother called the ambulance. I dropped everything and drove the short distance home. The ambulance was just leaving when I arrived. My father was taken to the resuscitation room of the emergency department. I stood at the door, and watched the scene unfold. He was not breathing; a tube was inserted into his airway, and a team of junior doctors started giving him cardiac massage. It wasn’t working. I indicated to them that they should stop, and they were happy to comply. Had my brother not called me, I would have been a member of this Cardiac Arrest Team, running down to the resuscitation room, not knowing whom I was going to be faced with.
Sudden, premature death was common among the men on the street where I grew up. R. – a few doors up – dropped dead, aged forty, leaving a wife and six children. S. – two doors down − died of a heart attack, aged sixty, leaving five children. D. – three doors up − at the age of fifty, collapsed, and died of a ruptured abdominal aneurysm in the ambulance. My mother still lives – alone – in the same street; many of the houses are now occupied by widows.
I have worked as a doctor for more than thirty years, nearly all that time spent in large, acute hospitals. Death in modern hospitals still has the faint whiff of an industrial accident, a failure of medical intervention. When I was a student, treatment of the dying was briefly and fleetingly covered − death being a ‘negative outcome’. We – the medical profession – had begun to believe in the delusion that we could tame nature, that all illnesses were potentially curable. Yet death was all around – in the wards, in the resuscitation room, in the morgue.
In those days, before the scandals about organ retention, many, if not most people dying in hospitals underwent a post-mortem examination. When I was a medical student, we were required to attend at least twenty post-mortems. These were surprisingly sociable events, with a large crowd of jostling students nervously and obligingly laughing at the pathologist’s jokes. The process involved in dissecting a corpse to establish the cause of death is indescribably gruesome, and I thought at the time that no family would consent to such a procedure if they could witness what actually goes on. I watched as the lungs, upper airway and tongue were removed in one piece. I saw how the skull was opened with a drill to extract the brain. I saw the bodies of dead babies and old ladies and young suicides. I had fallen behind in my attendance, and towards the end of the year there was a serious risk that I would not reach the required minimum of twenty. I was friendly with one of the pathology registrars, who would let me sit in on post-mortems at weekends, so I sometimes saw several on a single visit.
I should add that post-mortems were not as shocking for us medical students as they might have been because we had experience of the dissection room. The first visit to this room was, I admit, disconcerting: the overpowering smell of formaldehyde, the waxy, almost unreal corpses. We learned very little of lasting value over the two years spent carrying out dissections in the anatomy department, and I felt guilty that the public-spirited volunteers had donated their bodies for so little benefit.
During my first three years as a doctor, I was regularly part of the cardiac arrest team when I was on-call at nights and weekends. This showed me death in the raw, chiefly because cardio-pulmonary resuscitation was then (and still is) so spectacularly unsuccessful. Very often, we were ‘bagging’ with oxygen and cardiac-massaging people who were well and truly dead, the team called only to keep up appearances. It was not unknown for a nurse, having found a patient dead in their bed in the middle of the night, to call the arrest team, thus giving the impression to the relatives that she had chanced upon the patient just at the moment when they stopped breathing and had acted with the utmost diligence and initiative. Perhaps the most bizarre arrest call was to attend a patient who had jumped to his death from the top floor of the hospital, down to the concrete below. His mangled body was beyond fixing.
I was struck on more than one occasion by the sheer terror of those few still conscious near the end. One man has stayed in my memory. It was a Saturday afternoon in Bradford Royal Infirmary, Yorkshire, sometime in the mid-1990s. I was senior registrar on call for General Medicine, and was summoned to see a man in the Coronary Care Unit. He was in his mid-fifties, admitted to the unit with a myocardial infarction (heart attack). He had severe chest pain and breathlessness. I gave him an injection of morphine, but it didn’t work, and he looked at me with a twisted rictus of fear, the physical expression of pure horror. His heart stopped beating and we failed to resuscitate him. He died, his last conscious sensations being those of pain, the struggle for breath as he drowned in his own bodily fluid, and terror. The deathbed was the usual scene of a blue and battered corpse, oozing blood from all the punctured arteries and veins, surrounded by empty syringes, blood-stained sheets, and a silent arrest team.
Another man haunts me too: in his forties, he was admitted with a flare-up of his asthma. The arrest team (of which I was the most junior member) was called because he had suddenly become extremely short of breath. When we arrived on the ward, the man was blue and gasping for air. We didn’t know what was causing this. He was given oxygen, but did not improve, and stopped breathing completely. The most senior member of the team, the medical registrar, tried to intubate him, but instead of placing the tube in his trachea (windpipe), he placed it in the oesophagus (gullet), which resulted in a violent expulsion of vomitus. By the time the anaesthetics registrar arrived, he was beyond rescue. A post-mortem examination showed that he had a tension pneumothorax: the lung had suddenly collapsed. Not one of us had considered this as a possibility. Pneumothorax can be treated – relatively easily – by placing a drain in the chest cavity.
But life goes on, and after a few glasses of wine at home, you move on to the next day, the next awfulness. Doctors, unlike, say, soldiers or policemen, rarely admit to being affected by the horrors they have seen, and are seemingly immune to post-traumatic stress disorder.
Perhaps this immunity is partly owing to the fact that, although we see it every day, doctors do not think very much about death and dying. In my case, one of the reasons this became so was a procedure called percutaneous endoscopic gastrostomy (PEG). My specialism is gastroenterology, and much of my work is performing endoscopic procedures. PEG is one such endoscopic procedure, which I first carried out in the early 1990s. It involves the placement of a feeding tube through the abdominal wall, directly into the stomach, bypassing the mouth and gullet. PEG tubes are commonly inserted in patients who cannot eat or swallow. Most of these patients are old and frail.
This procedure was first described by two US surgeons, Jeffrey Ponsky and Michael Gauderer in 1980, and was initially used mainly in children with severe neurological disability. After doing this procedure for some time, it gradually dawned on me that in most patients PEG was futile and potentially harmful. Many people with dementia were subjected to the procedure, despite the fact that several studies had shown that it did not prolong life, improve nutrition or prevent suffering. People who had sustained a severe, incapacitating stroke, with no prospect of recovery, were kept pitifully alive by it. There were lengthy and complex legal disputes revolving around PEG feeding of individuals with persistent vegetative state in Britain and in the US, in the respective cases of Tony Bland, who suffered severe brain injury during the Hillsborough disaster in 1989, and Terri Schiavo, who was left severely brain-damaged having been resuscitated after she had a cardiac arrest at home in 1990.
In 2002, I happened to be at the annual meeting of the American Gastroenterology Association in Atlanta. This meeting attracts up to 15,000 delegates from all over the world; the atmosphere is one of pomposity and hubris. At the end of a ‘plenary’ session on endoscopy, Jeffrey Ponsky was presented with an award, honouring his contribution to the speciality. Before the handing over of the actual award, we were treated to a short film about the great man. I learned that he was keen on horse-riding and country music, and that, way back in the 1960s, his mother-in-law had loaned him the money to buy endoscopes when he had a hunch that this would be the future. As I sat in the vast auditorium, I reflected that Jeffrey Ponsky’s co-invention of PEG was not an unalloyed boon to humanity.
Over time, I became increasingly uncomfortable carrying out the insertion of these feeding tubes, and invested a lot of time and psychic energy in trying to dissuade families and well-meaning colleagues from authorizing the procedure. Eventually I reached the uncomfortable conclusion that, in most cases, this form of feeding was instituted mainly to meet the complex emotional, professional – even economic – needs of families and care-givers, rather than those of the patient. PEG, in many cases, was a technical panacea for existential problems.
This fact, of course, was unacknowledged, or was actively denied. It is much easier, for example, to feed elderly confused people by PEG than by the slow, laborious, sometimes frustrating and expensive (in terms of labour costs) method of spoon-feeding. PEG feeding is a superficially attractive solution to all forms of eating difficulties in the frail, the old and the dying, but comes at a high price, with the risk of the procedure itself, along with chronic problems of aspiration pneumonia, diarrhoea, tube leakage and infection. More importantly, it turns the ordinary human activity of eating into a medical intervention, and deprives people of this simple pleasure. I actively – and successfully – resisted pressure from other doctors to insert PEG tubes into the dying. The procedure became for me a symbol of the medicalization of death, and of the failure of modern medicine to care humanely for those most in need of its help.
Some years ago, I was asked by a neurologist colleague to insert a PEG tube in a woman with advanced motor neurone disease who had swallowing difficulties. The patient herself was ambivalent about having the procedure, but her husband was aggressively insistent. He had bullied both his wife and her consultant, and hovered outside the Endoscopy Unit when she came down from the ward to have the PEG tube inserted. He insisted that his wife was not competent to make decisions about her treatment, and announced that he would not leave until the PEG tube was inserted. I proceeded reluctantly, and – to my enduring shame – carried out the procedure, even after the woman said, ‘I don’t want this.’
One of the first tube insertions of this kind I carried out in the early 1990s was in a man with dementia. The procedure was straightforward and seemingly uncomplicated, but the following day he became suddenly unwell with severe abdominal pain and fever. He clearly had peritonitis, which usually means that an abdominal organ has been perforated. The surgeon on-call refused to operate, on the grounds that the man was so frail that an operation would kill him. He was therefore treated ‘conservatively’ with antibiotics and intravenous fluids, but died the next day. Because this man died following a medical procedure, the coroner was notified, and I was eventually called to give evidence at the inquest. A very distinguished forensic pathologist described the post-mortem findings. The end (the ‘button’) of the PEG tube was not where it should have been – in the stomach cavity – but outside the stomach, in the peritoneal cavity. When I had completed the procedure, I had checked that the ‘button’ was within the stomach, which it was. The overwhelmingly likely explanation was that this poor demented old man, in his confusion, had pulled the ‘button’ out of the stomach, but not out of the abdomen. The nurses did not notice this, and continued to feed him, with the liquid feed going directly into his peritoneum, not into the stomach. I often think about this man. Nowadays, he would never have had the procedure.
I recently came across an old thank-you note, from the four siblings of a patient who died many years ago, when I worked in the UK, R. was a woman in her late fifties, who had been in institutional care for many years. She had multiple disabilities, including cerebral palsy, with mild intellectual disability, diabetes and recurrent chest infections. I had first encountered R. a few years before that, when she was referred to me for a PEG tube insertion. I saw her at my clinic, where she arrived with a committee of carers, including nurses, a dietician, and a speech and language therapist. The speech and language therapist had carried out a detailed assessment of R.’s swallowing and had diagnosed a ‘severe swallowing disorder’, with a high risk of choking, which in turn could lead to aspiration of food into the lungs, causing pneumonia. She recommended that R. should have a PEG tube. I explained patiently that several studies had shown that PEG tubes, far from curing this problem, actually increase the risk of aspiration pneumonia. The committee expressed its collective displeasure and left the clinic unhappy.
Some days later, I took a call from R.’s sister. I was expecting trouble, but it turned out that she was a senior nurse and was calling to let me know that she agreed with my assessment. The family, however, were being put under intolerable pressure by the staff at R.’s care home. R. didn’t want a PEG tube herself. Her ability to swallow was indeed poor, but she enjoyed her food and the sociability of mealtimes. Her mother, to whom she had been very close, had died a couple of years before, and R.’s zest for life had diminished gradually since then. In order to mollify the nurses at R.’s care home, I admitted her to the ward for a week or so, and we found that her food intake was just about sufficient for her needs. She went back to the home without a PEG tube. Over the next couple of years, R. had several admissions with chest infection, and one of these infections eventually killed her. I relate this story because in many ways it is so atypical. Peaceful and dignified death is hard to achieve in acute-care hospitals. Some relatives do not thank me for a non-interventionist approach; one family, in a similar clinical scenario, accused me of attempted euthanasia.
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Although I am primarily a gastroenterologist, I also do a lot of what is known as ‘general’ medicine. General Medicine is a British and Irish phenomenon: the concept is unknown in the US and continental Europe, where sick people generally tend to see a doctor who specializes in what ails them. When I am ‘on take’ for General Medicine, I accept everything that the super-specialists do not want. Most of these patients are frail and old, with multiple diseases. Many have dementia. I am ashamed to admit that I once viewed the care of such patients as unworthy of my attention as a highly specialized gastroenterologist. Many of these people were at the end of their lives and caring for them forced me to think about death and dying.
The majority of my really sick in-patients are those with liver failure caused by cirrhosis, mainly attributable to alcohol. I witnessed the death, on my first Christmas Day back in Ireland after fourteen years in the UK, of a twenty-seven-year-old boy – for a boy was all he was − with alcoholic liver disease. Since then, I have witnessed many such deaths, as Ireland shot from the bottom to the top of the European alcohol consumption league table. Mortality in these patients is worse than for most cancers, and death from liver failure can be particularly gruesome. The patients tend to be mainly young (in their thirties and forties) and most do not qualify for liver transplantation.
Some years ago, I was called on a Sunday afternoon by a surgical registrar at the hospital. I was not on-call, but he needed help with a liver cirrhosis patient, who was bleeding profusely from oesophageal varices (varicose veins in the gullet caused by cirrhosis). I drove into the hospital, taking my ten-year-old son with me, because my wife was away at the time. I left my son in my office and went to the operating theatre; I told him I would not be long. The patient, a man in his forties, was in a bad way: he was jaundiced, grotesquely swollen owing to fluid retention, and semi-comatose. We carried out an endoscopy to find (and, we hoped, to treat) the source of bleeding. As expected, the patient had oesophageal varices. We were unable to stop the bleeding, and over the next two hours struggled in vain to save him. Meanwhile, my son, locked in my office, wondered if he had been abandoned. Exhausted and bloody, I eventually collected him and drove home. On the drive back, I told him what had happened. He resolved there and then never to become a doctor.
I have witnessed so many deaths from liver failure in relatively young people. Yet death is rarely discussed as a possibility since patients and their families tend to assume that modern medicine can fix broken organs, or that if they cannot be fixed, they can be replaced. Although cirrhosis of the liver has a worse prognosis than most cancers, patients rarely get the type of palliative care available to people with cancer. They die after long and messy hospitalizations, the medical technology pushed right to the bitter end.
My daily work also caused me to think about cancer care. I regularly diagnose many common cancers, such as those of the colon, oesophagus, stomach, pancreas and liver. Although my main role is diagnosis, I also carry out treatments for cancer, such as inserting stents (tubes) in patients with jaundice as a result of bile duct obstruction caused by pancreatic, and bile-duct cancers. The most challenging part of my job with cancer patients, however, is giving the bad news. This job frequently falls to me, before the patient is seen by a cancer specialist – an oncologist. I believe it is unfair to expect an oncologist to see a patient without first telling that patient what an oncologist is, and why they need to see one.
One of the more pernicious myths of modern medicine is the notion that a doctor with ‘communication skills’ and a sympathetic manner can somehow magically transmute bad news into something palatable, that he or she can, Mary Poppins-like, give a spoonful of sugar to help the medicine go down. Medical students now attend workshops on ‘How to Give Bad News’. This notion of managing Bad News is symptomatic of the temptation to rebrand the terrors we humans inevitably face – principally death – as almost some form of personal growth. Patients and relatives are said to be on a ‘journey’, and the rather speculative notions of Elisabeth Kübler-Ross on the emotional responses of dying people (the five stages of denial, anger, bargaining, depression and acceptance) are now trotted out, as if they were scientific fact. People react in all sorts of ways to their impending death, and I cannot recall a single person moving neatly through Kübler-Ross’s five stages. The power and terror of death refuses to be tamed by workshops, by trite formulae. No more than life, can death be packaged and processed into bite-sized chunks. Death is always sovereign, always in control.
Relatives of dying people experience complex emotions. Doctors caring for the dying increasingly find themselves in conflict with patients’ families, and over the years I have endured some bitter and unedifying battles. Many years ago, when I worked in the NHS, an elderly woman with dementia was admitted under my care. She arrived at the hospital with aspiration pneumonia, almost certainly the result of a PEG feeding tube inserted – unwisely, under pressure from the family – in another hospital. When her condition deteriorated, I tried to persuade her many children that intensive care treatment, which would involve intubation (insertion of a breathing tube) and mechanical ventilation, was not appropriate for a woman of her age with advanced dementia. Inevitably, however, she was admitted to the ICU over the following weekend, when I was not on-call, and the medical registrar came under intense pressure from the family to escalate the old lady’s care. She was transferred from the general ward to the ICU, where she was intubated and ventilated and, rather miraculously, survived. On the Monday morning, along with one of the ICU consultants, I met the family and talked with them for over an hour. Again, we tried to persuade them that Intensive Care was too interventionist for their mother. One of the daughters angrily accused us of attempting euthanasia. Another daughter announced that she would take her mother to a private hospital, where she would be treated ‘properly’. The meeting ended acrimoniously and unresolved. The ICU consultant stood his ground and told them that in the event of a further deterioration, the ICU would not admit her.
The old lady went back to the general ward, and lingered for several months. Over that time, I had many meetings with the family, along with regular correspondence from their solicitor and the hospital risk managers. The relationship between the family and the ward staff grew increasingly strained. The daughters constantly challenged the nurses and junior doctors and, on occasion, interfered with the electronic settings controlling the delivery of intravenous fluids and antibiotics to their mother. One of them took to writing instructions on the drug-chart, stating that her mother was not to be given morphine under any circumstances. As the situation deteriorated, a committee convened by the hospital’s clinical director finally decided that the patient should be made a ward of court, so that the hospital would no longer be answerable to the family. While this legal process was getting under way, the old woman’s condition suddenly deteriorated, and she died. Her death was farcical and undignified. Although I had made it clear to the family that we would not attempt cardio-pulmonary resuscitation, when the poor woman finally died, two of the daughters attempted their own cack-handed version of cardiac massage and mouth-to-mouth resuscitation.
Around the same time, a woman in her forties with liver failure, caused by alcoholic cirrhosis, was admitted under my care, and I endured a similarly bitter and unedifying conflict with her brother and sister. She eventually died after enduring a long, painful series of setbacks and complications over six months. She was not a candidate for liver transplantation, but I failed to persuade her family that this was so. A second opinion was asked for and provided, only for the patient’s sister to accuse me of unduly influencing the doctor (a liver transplant specialist) who gave this second opinion. I requested a third opinion, which concurred with both my assessment and the second opinion. Again, a great deal of correspondence passed between solicitors and hospital risk managers.
Her sister, a successful lawyer, tended to visit the ward late in the evenings and demand an update on her sister’s blood tests – the more obscure and clinically irrelevant, the more she agitated. The nurses and junior doctors were terrified of her. I met this sister on many occasions in an attempt to mollify her, but it became clear to me after several of these meetings that I was making no progress. After one bitter weekend, when this sister created mayhem on the ward, I refused to engage in any further discussions with her and dealt with her younger brother instead. The brother, unfortunately, simply passed on his elder sister’s instructions and demands. I tried to engage openly and honestly with the patient herself about the problems we were having with her sister, but she continued to defer to her elder sibling in all matters. I tried, in vain, to persuade her to see the palliative care services. She died slowly and painfully, over six months, in an atmosphere of conflict and denial.
Shortly after her death, I learned something about the complex family dynamic from her brother, who finally broke rank. My patient, who was single, had given up her job when her elderly mother became ill and could not look after herself. She cared for her mother for several years. When the old woman finally died, my patient was left alone, without a job or a purpose. Alcohol filled the void. Her difficult sister, who had married and prospered, seemingly channelled her free-floating guilt into conflict with doctors and nurses.
My elderly uncle, a much-loved priest, was sick throughout 2012. It had all started with a minor stroke. Although the stroke affected his balance, he insisted on going home before his doctor felt he was ready. A few days later, he fell in the kitchen and fractured his hip. I went to the Emergency Department that evening, and found him in great pain. The surgeons had to delay doing hip-replacement surgery because my uncle had emphysema and heart disease, and they wanted to get him as fit as possible for the procedure. He eventually had the operation, but then endured a series of setbacks, including a bowel obstruction, for which he had a second operation. He spent several months in hospital. His appetite was poor, and he tended to cough and splutter when he ate. Already frail, he lost weight. The speech and language therapists predictably recommended a PEG tube, but he wisely declined. His many parishioners were devoted to him, but the constant stream of visitors exhausted him. Often I had to ask them to leave.
It became clear that my uncle would never be well enough to go home and a place was found for him in a nursing home run by an order of nuns. By now he was breathless even at rest, and could walk only a few steps with the aid of a frame. He had as many visitors as ever, and said daily mass in the chapel of the nursing home. His many nieces and nephews took it in turns to take him out, but these excursions became increasingly exhausting for him. One of the last outings was to my house, to celebrate my mother’s eightieth birthday. I invited all of his extended family: he had christened and married all of us. We knew it would be the last time we would be together with him. In December, he reached his ninetieth birthday, an occasion he declined to celebrate. Late in February 2013, he developed pneumonia and was sent back to the hospital. He had no reserves to combat it, and died a week later.
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The year 2012 ended with the news that my father-in-law had a malignant tumour of his bone, chondrosarcoma. He was seventy-four and, before then, had enjoyed excellent health. He was slim; played golf several times a week; had never smoked. He had complained for several weeks of an ache in his left thigh. He phoned me for advice and I suggested he visit his GP with a view to getting an X-ray. The X-ray showed something abnormal in the shaft of the femur, the thigh-bone. I knew this wasn’t good. Things then moved fast: he was admitted to his local hospital in Dumfries, in the south-west of Scotland, and had a scan, which showed a large bone tumour. The local orthopaedic surgeons arranged for him to have further treatment at a specialist bone cancer unit in Glasgow. In the interim he was sent home, and given a combination of painkilling drugs. He felt ghastly; a few days later, an ambulance took him to Glasgow. When he arrived there, he experienced excruciating pain in his thigh getting into the hospital bed. The doctors in Glasgow discovered that he had developed a degree of kidney failure, caused by the painkilling drugs, and that his thigh-bone had fractured at the site of the tumour – a ‘pathological’ fracture – an indicator, I knew, of a poor prognosis.
He underwent major surgery, although there was some suspicion before the operation that the tumour had spread to his lungs. The operation removed most of his thigh-bone, replacing it with a metal rod. The recovery was slow and painful. Pathological analysis of the tumour showed that it was ‘high-grade’, that is, highly malignant. I phoned his surgeon, who was polite and circumspect, but who left me in little doubt about the bleak prognosis. My father-in-law was sent back to the hospital in Dumfries for physiotherapy and rehabilitation to get him back on his feet. He was discharged on Christmas Eve; his arrival home by ambulance was joyous and tearful.
A month later, he went back to Glasgow to see an oncologist, who told him that chemotherapy or radiation treatment had nothing to offer. Back at home, he gamely did his exercises and his physiotherapy, but continued to require crutches. His thigh became increasingly painful; he was advised that this was just normal post-operative swelling and was to be expected. After several months during which he endured increasing pain and swelling, a scan revealed local recurrence of the tumour in his thigh, along with a large blood clot. Shortly after, another scan confirmed the presence of tumour in his lungs. Thereafter – unsurprisingly – he gave up the exercises.
These days, we hear the phrase ‘a good death’ bandied about. So what constitutes the ideal death? Naturally, we want it to be free of pain. Most of us want it to happen at home, in an atmosphere of dignity and calm, surrounded by family. Our contemporary culture values the idea of death as ‘personal growth’, a spiritual event: those attending the dying should feel privileged. A ‘good death’ is also one where the dying man and his family and friends openly acknowledge its imminence. Death is also an opportunity for ‘closure’, when conflicts and unfinished business are resolved.
So the contemporary consensus is that it should go something like this: at the age of one hundred, after a lifetime of professional achievement and personal happiness, you become acutely ill, having never experienced any sickness more serious than a cold. This illness does not rob you of your mental faculties, your ability to communicate or to enjoy food. The nature of this illness allows your medical attendants to predict with pinpoint accuracy the hour of your demise. You gather your family and friends to tell them how much you’ve enjoyed your life, and how much you love them all. You make practical arrangements for your property and business interests. If you are religious, you receive the last rites and make peace with your God. You are able to distil and pass on the wisdom accrued over your long life. You eat one last, delicious, meal. You raise your hand and say ‘Goodbye’. You close your eyes, and die immediately. Your family and friends, though distraught by your leaving, undergo a powerful spiritual experience. Your life and example has enriched their lives. Your funeral is an occasion of joy and renewal, attended by thousands. You will live forever in the memory of those you have left behind.
We know, of course, that dying isn’t like that at all. You are likely to die after a long, chronic illness. This illness may rob you of your mind and your ability to communicate: dying dismantles not only the body, but frequently the spirit too. It is highly probable that you will depend on others to help carry out ordinary bodily functions (eating, dressing, going to the toilet). This death is most likely to happen in a general hospital or a nursing home. It is much less likely to happen in your own bed at home, and even less likely again to take place in a hospice. It will probably happen with strangers in attendance. The end will be sudden and precipitate, after a long decline. You may not be aware that you are dying, so you may not get the chance to say goodbye properly to family and friends. Near the end, over the last few days, it is highly likely that you will be unconscious, sedated and pain-free on a syringe-driver. The syringe-driver may be linked up before you even realize you are dying. The pleasure of food and drink will be a distant memory, as will all other pleasures. You may withdraw from others towards the end, as dying animals do, and turn to the wall, as dying humans have done for millennia.