The Way We Die Now

by Seamus O'Mahony

  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.

  TWO DEATHS

  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.

  *

  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.

  GOOD DEATH, BAD DEATH

  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 unfinis
hed 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.

  CHAPTER 2

  Hidden Death

  In the mid-1960s, cultural commentators in Europe and North America began to write about how death had become something to be spoken of in hushed whispers, something to be covered up, hidden, even denied. There were many reasons for this: the rapid advances in scientific medicine, industrialization, the loosening of the bonds that held together traditional communities, the decline in religious belief. Parallel with this new death-taboo, these commentators observed a growing concern that death in modern hospitals was becoming more technical, more ‘undignified’. Four writers in particular – two anthropologists, a social philosopher and a historian – wrote about this phenomenon. The four, Philippe Ariès (a Frenchman), Geoffrey Gorer (an Englishman), Ernest Becker (an American) and Ivan Illich (an Austrian), were all essentially loners. Their backgrounds, literary styles and influences were vastly different, but they all concluded that something profound had happened in the twentieth century to human beings’ relationship with their own mortality.

  PHILIPPE ARIÈS:

  TAME DEATH, HIDDEN DEATH

  There is something singularly admirable about the French historian Philippe Ariès (1914–84), who toiled away for years on his huge opera, assisted only by his wife and sustained by bloody-mindedness and a passion for his subject. He was born in Blois, in the Loire Valley, south-west of Orléans, to a devoutly Catholic and royalist family. After taking his primary degree at the University of Grenoble, he studied history as a graduate student at the Sorbonne, but became disillusioned with academic life and did not take his post-graduate degree or pursue a career as a professional historian. He supported himself by working in business (tropical fruit), but continued his historical work: fittingly, his memoir is called Un Historien du dimanche (‘A Sunday Historian’) (1980).

  As a student, Ariès had become disenchanted with orthodox narrative history, which seemed to concern itself mainly with great wars and political events. Instead, he became a ‘social’ or ‘cultural’ historian and wrote history through the prism of ordinary lives. His first great achievement was L’Enfant et la vie familiale sous l’ancien régime (1960), translated into English as Centuries of Childhood: A Social History of Family Life (1962). Ariès controversially argued that ‘in medieval society, the idea of childhood did not exist’. Professional historians, notably Geoffrey Elton, were dismissive, but this opprobrium merely spurred Ariès on. His style is opinionated, discursive, speculative and polemical, which enraged the academy, and which makes him worth reading.

  Ariès spent fifteen years gathering material for his monumental history of death and dying, L’Homme devant la mort (1977), translated into English as The Hour of our Death (1981). The book is a richly detailed account of death, funeral practices and mourning rituals in Western Europe during the last millennium. It is a long book, in parts quite dull, stuffed with detail on such arcane topics as French probate laws in the seventeenth century. Ariès described how death in pre-industrial Europe was distinguished by acceptance and a lack of evasion. He called this ‘tame death’. Communality and openness gave death its ‘tamed’ quality. Tame death was characterized by ‘indifference, resignation, familiarity, and lack of privacy’. The interval from the onset of illness to death was usually short. Ariès quotes from the biography of the priest and writer, Guillaume Pouget, in which he describes the death of his mother, an elderly French peasant woman:

  In [18]’74, she contracted a summer cholera. After four days she asked to see the village priest, who came and wanted to give her the last rites. ‘Not yet, M. le curé, I’ll let you know when the time comes.’ Two days later: ‘Go and tell M. le curé to bring me Extreme Unction.’

  This was a typical ‘tame death’: swift, accepted, familiar – the priest more important than the doctor. Most importantly, everyone – from the dying woman to the priest – knew and understood their role. Ariès identified the historical and social forces which led to death becoming ‘hidden’: industrialization and the consequent flight from the country to the city; the decline in religious belief, which began with the Enlightenment; the development of scientific medicine; the rise of the hospital; and the establishment of the funeral industry:

  For until now, incredible as it may seem, human beings as we are able to perceive them in the pages of history have never really known the fear of death. Of course they were afraid to die; they felt sad about it, and they said so calmly. But this is precisely the point: their anxiety never crossed the threshold into the unspeakable, the inexpressible. It was translated into soothing words and channelled into familiar rites. People paid attention to death. Death was a serious matter, not to be taken lightly, a dramatic moment in life, grave and formidable, but not so formidable that they were tempted to push it out of sight, run away from it, act as if it did not exist, or falsify its appearances.

  When it was tame, ‘death was not a personal drama but an ordeal for the community’. The community tamed death by ritual:

  The ritualization of death is a special aspect of the total strategy of man against nature, a strategy of prohibitions and concessions. This is why death has not been allowed its natural extravagance but has been imprisoned in ceremony, transformed into spectacle. This is also why it could not be a solitary adventure but had to be a public phenomenon involving the whole community.

  Ariès conceded, however, that ritual could go only so far in taming death: ‘Death may be tamed, divested of the blind violence of natural forces, and ritualized, but it is never experienced as a natural phenomenon. It always remains a misfortune, a mal-heur.’

  Ariès showed how ritual dominated pre-industrial life, and guided people through life’s crises: ‘Once, there were codes for all occasions, codes for revealing to
others feelings that were generally unexpressed, codes for courting, for giving birth, for dying, for consoling the bereaved. These codes no longer exist. They disappeared in the late nineteenth and twentieth centuries.’ The codes were largely governed by organized religion: books about the art of dying – the ars moriendi – were popular in the Middle Ages and provided spiritual instruction on how to prepare for death. When we ceased to believe (or at any rate, to worship) we found ourselves rudderless, unsure about the ritual, without a script.

  Our ancestors regarded death as a process of transfer to another life. The people who lived in medieval Europe seem to have truly believed not only in heaven and hell, but also in such entities as purgatory and even limbo (abolished by papal decree in 2007). The Christian faithful went to extraordinary lengths to limit their time in purgatory, by buying plenary indulgences, going on pilgrimages, and in the case of the very wealthy, by endowing churches and monasteries.

  Ariès paints a bleak picture of death in the late twentieth century: ‘It [death] has now been so obliterated from our culture that it is hard for us to imagine or understand it. The ancient attitude in which death is close and familiar yet diminished and desensitized is too different from our own view, in which it is so terrifying that we no longer dare say its name.’