The Way We Die Now

by Seamus O'Mahony

  DOCTOR: Well, I had a long chat with her, and it emerged that she had lost not only her husband but almost all her generation of friends and acquaintances were already dead, that her physical frailty prevented her from doing almost all the things she had previously enjoyed and that she had no desire to live much longer. That being the case, I decided that fibrinolytic therapy was inappropriate.

  The Sun newspaper reports on the case: ‘Nan dies after doc denies her clot-buster’.

  I admire Iona Heath: she has been an eloquent critic of the excesses of modern medicine, and her contribution to the debate on assisted suicide has been refreshing and challenging. She fails, however, to comprehend the reality of being a junior doctor on-call for a Coronary Care Unit in a busy general hospital. General practice has changed dramatically in the last twenty years or so. GPs no longer provide out-of-hours care for their own patients, as they did in the past. It is rather disingenuous of family doctors, therefore, to criticize the less than holistic care provided by hospitals when they have delegated their own out-of-hours responsibility to cooperatives and deputizing services. If Iona Heath was so concerned about her elderly patient, she could have exercised her right as the patient’s GP to resist her admission to hospital and simply have treated her at home, in her own familiar environment, without the clot-busting drugs and other nasty things doled out by the uncaring hospital. The Coronary Care Unit should not be expected to provide spiritual guidance.

  Heath’s criticism of acute hospital care is symptomatic of a wider societal issue: acute hospitals are criticized, with some justification, for failing to care properly for the dying, yet society has handed over most of the responsibility for care of the dying to these very same hospitals. Nursing homes commonly send dying patients into emergency departments because it is much easier for them, administratively and legally, if the patient dies in hospital: no mess, no questions from troublesome relatives, no possibility of inspections by government agencies, no death certificate to fill in. Let somebody else take responsibility.

  Acute hospitals have become a dustbin for all sorts of societal problems, not just dying. As a consultant on-call for acute ‘unselected’ General Medicine, I commonly admit elderly people whose only problem is that they can no longer live independently. I have admitted women whose only problem is a violent husband. I have even admitted an elderly man who simply wanted free accommodation while his house was being redecorated. If we, as a society, treat acute hospitals as dustbins for all sorts of non-medical problems, we should not complain if these hospitals begin to look and feel like, well, dustbins. The doctors and the hospitals did not ask for these problems – society was quite happy to hand them over, as long as the problems could be given a medical gloss. And the greatest of these problems is death. Ivan Illich assumed that ‘medicalization’ is something doctors actively seek, to enhance their power. But he was wrong. Medicalization does not empower doctors: they suffer.

  Ireland has a long and unedifying tradition of medicalizing social problems. At one period in the mid twentieth century, the country had proportionately more people (2 per cent of the entire adult population) in long-term psychiatric care than Stalin’s Soviet Union. Many of these ‘patients’ had no psychiatric illness as such. Some were simply troublesome: spinster sisters who needed to be got rid of to make way for the new wife on the farm, delinquent teenagers, and so on. The Irish public was quite happy with this state of affairs, although there was much public hand-wringing when the late Mary Raftery made a television documentary on the subject.

  Some relatives I have dealt with believe that acute hospitals should function almost as a branch of the prison service, and detain against their will all sorts of people – mainly the elderly, but also other groups, such as alcoholics and anorexics. I find myself constantly, and wearily, telling my juniors and ward nurses that we work in a hospital, not a prison. Some years ago, an alcoholic patient of mine was discharged after treatment for a chest infection. Her family phoned me up to express their outrage that I had willingly and knowingly sent home a woman who would start drinking again. I explained that this was regrettable, but the patient had made her choice, which I had to respect. They threatened to report me to the police, the Irish Medical Council and, most tellingly, to the Joe Duffy Radio Show. (This show affords the Irish public the opportunity to let off steam about any sort of perceived injustice.) I offered to give them the contact details for all three agencies, and never heard from them again.

  A seventy-year-old woman was brought in to the Emergency Department one Sunday afternoon some years ago when I was on General Medical ‘take’. She lived alone, in conditions of absolute squalor, surviving somehow on a diet of cigarettes, strong tea and whiskey. The ambulance had been summoned by well-meaning, concerned neighbours and relatives. One of the ambulance crew told the medical staff in the Emergency Department that the woman lived in ‘the worst conditions he had seen in twenty years’. I talked to the old woman, and concluded that there was no medical problem as such and, more importantly, that she had the mental capacity to make her own decisions. After a day or two on the ward, when she was fed and cleaned up, she told me, clearly and pointedly, that she wanted to go home – to her own squalid house, not a care home. I explained to her that I was happy for her to go, but that her neighbours and relatives might not be so happy. Anticipating trouble, I made sure that one of my geriatrician colleagues assessed her mental capacity, and he agreed that this woman was compos mentis. She discharged herself from hospital: I made it clear to the nurses and junior doctors that she was not to be impeded in any way – she had made her own decision on the matter.

  Her neighbours and relatives viewed the acute hospital as the correct sorting-house for this woman’s existential problem, or perceived problem. I reflected that they never entertained the option of going in to clean up her house themselves or cooking her a hot meal. Clearly, these were services that the state should provide. And the best way to grab the immediate attention of the state was to bundle this poor old woman into an ambulance and land her, on a Sunday afternoon, in the Emergency Department, where she would be accommodated, against her will, on a trolley. My role was that of jailer, not doctor. Inevitably, the neighbours and relatives prevailed: she was sent back into hospital by ambulance, and eventually agreed reluctantly to go from there to a nursing home.

  What has all this to do with dying? My point is this: society has thrust onto doctors and hospitals the messy, intractable and insoluble aspects of life, such as old age and death. We are now also expected to police lifestyles that others disapprove of. After all my years of practice, I am still astounded that families expect me to solve the existential problem of being old and no longer independent. Many families, who know, deep in their hearts, that an elderly parent cannot continue to live independently, wait for some acute illness to occur, when this problem then becomes the hospital’s. The acute illness is generally overcome in days, yet the patient may languish in hospital for months, while the paperwork governing their existential dilemma is slowly worked through.

  I obstinately cling to the notion that a doctor’s role is limited: our job should be the treatment of illness. When we go beyond that – when society forces us to go beyond that − we suffer. The general public, the media and politicians constantly complain about general hospitals. They would profit by looking at themselves, and by examining what they ask of such institutions.

  *

  The medicalization of death was a gradual process. Philippe Ariès listed the various historical forces that led to it, one of which was the rise of the hospital. Most hospitals in Britain and Ireland began as infirmaries attached to workhouses. Hospitals were, as George Orwell observed, where the poor and the destitute went to die. St Finbarr’s Hospital in Cork began as such a workhouse: it is now a geriatric hospital. I can recall older patients begging me not to send them to ‘The Union’, as the old workhouse was called. Right up to the middle of the twentieth century, wealthy people were tre
ated at home – operations such as appendicectomies were commonly performed by surgeons in private houses. Gradually, however, hospitals – particularly the ‘voluntary’ ones, which were outside the control of the municipal authorities – got better and the middle classes began to go there to get treated and, eventually, to die. Cutting out an appendix on the kitchen table was no longer the acceptable standard of care. Philippe Ariès described how the hospital began to take over the community’s role in the care of the dying: ‘the hospital has offered families a place where they can hide the unseemly invalid whom neither the world nor they can endure... The dying man’s bedroom has passed from the home to the hospital.’

  Acute general hospitals provide a great critical mass, not only of doctors and nurses, but also of equipment, facilities and ancillary services. And no matter what happened at the Stafford Hospital, a large acute general hospital is still the safest place to be if you are acutely ill, especially if that illness is complex and life-threatening. GPs no longer deliver babies or set broken bones. Private hospitals, although they provide single en suite rooms, appetizing food and good parking, are no place for the acutely ill.

  So: large acute general hospitals are the best place to be when you are very sick but not the ideal place in which to die. Yet that is where most of us are destined to spend our last days and hours. Is there a better option?

  CHAPTER 5

  Deathology

  In 2013 I was invited to give a lecture – on gastrostomy (PEG) tube-feeding – at our local hospice, Marymount in Cork. After the lecture, I asked the hospice’s medical director, Tony O’Brien, to show me around. I had spent the morning at my own hospital, and the contrast between the two institutions could not have been greater. The new hospice had taken decades to fund and build, and was eventually completed, despite Ireland’s economic collapse. It is difficult to convey just how physically impressive the building is: all is light, glass, polished blond wood, a cross between a luxury hotel and the headquarters of a multinational corporation. It is the most architecturally impressive hospital I have ever been in, an honour which before I visited Marymount had gone to the National Cancer Centre Hospital in Tokyo. Order and good humour abounds: no rushing trolleys, no funny smells. A huge atrium is filled with plants and running water. All the rooms are single and en suite. There is a bright and airy prayer room. There are designated areas for hairdressers, art classes and natural healers. The staff certainly look very happy, and palliative care has no difficulty recruiting trainees.

  The new hospice gives an impression of club-class death, but Tony O’Brien is sensitive to the perception that hospices provide ‘de-luxe’ dying. He pointed out to me that at any one time, his service has forty in-patients at the hospice, but ten times that number on their books in the general hospitals and in the community. He is also exasperated by the notion that palliative care is exclusively about care of the dying. ‘I care for the living and the dying,’ he told me. He is right: palliative care doctors look after the dying, certainly, but also care for many others with chronic illnesses that cannot be cured.

  It wasn’t always like this. Palliative, or hospice, care was essentially invented by one woman: Cicely Saunders. She had trained as a nurse, but went on to qualify as a doctor, having been advised by the surgeon Norman Barrett that if she wanted to work with the dying, she should study medicine, because it was doctors who deserted the dying. She had what were then radical ideas about the care of the dying, and set up the first hospice in London, St Christopher’s. In the early years, hospices dealt almost exclusively with patients dying of cancer and the discipline was then known as ‘terminal care’. Hospital doctors were suspicious, and defensive, about the need for such a specialty. They (correctly) perceived it as a judgment on their shortcomings: palliative care arose from a real need to improve treatment of the dying. Generations of palliative care specialists, including Tony O’Brien, subsequently trained at St Christopher’s. Tony came back to Cork in the early 1990s and became the first specialist palliative care physician in the region, when he joined the staff at the old Marymount Hospice, a rambling Victorian building near the city centre.

  You do not need a medical background to see immediately that the new Marymount Hospice offers a peaceful, decorous and dignified environment for dying people. Yet the fact remains that ten times as many deaths take place in the acute hospitals. This may be in part down to a simple lack of capacity, with limited access to hospice beds, but it also reflects, I believe, an unwillingness on the part of the sick and the dying to embrace the relatively new rituals of the hospice. By that I mean that patients receiving treatment from the hospice have accepted, to a greater or lesser extent, that their condition is not curable, and that, sooner or later, they will die from it. Many of my patients are unwilling to accept or make this judgment, and by the time they do, it is too late, and they die in the acute general hospital. Tony told me that the families of some of his patients dying at Marymount don’t mention the hospice’s name in the newspaper death notice (so important in Ireland), because dying in a hospice is still seen by some as vaguely shameful.

  It needs to be said that it is easier for hospices to look good compared to acute general hospitals. By the time the dying patient has embraced the hospice ritual, the hard work – namely, altering their expectation of the future – has already been done by another doctor. When a patient is admitted to a hospice, there are no longer questions about ICU admission, further investigations or more chemotherapy. The hospice doctors work at a less frenetic pace than their colleagues in the general hospitals; ‘saving lives’ is not part of their job description. The environment of the hospice is notable for the absence of chaos, squalor, frayed tempers and shabbiness.

  Most dying patients, however, never get to embrace hospice care, and most deaths still take place in acute hospitals and nursing homes. For some, hospice care is tantamount to surrender, to ‘giving up’. I am reminded of a patient, an elderly man with advanced and incurable cancer. I went to see him one morning and spoke with him and his son. It was clear to me that he was dying. I tentatively suggested that we should consider admission to the hospice. His son asked to speak to me outside his room and told me that he was appalled: I had dared to use what she called ‘the M word’ (Marymount) in the man’s presence. For some, even speaking the name of the hospice is tantamount to giving up. I was forced into making an abject and unconditional apology.

  Dying patients do not seem to move in an orderly fashion through Elizabeth Kübler-Ross’s five neat stages of denial, anger, bargaining, depression and acceptance. Many never get past denial. Some jump straight to depression. Others do it in reverse; and some rebels don’t do any of the five stages. Hospice care is a different ritual to hospital care, and many patients are unwilling or unable to embrace this ritual. It is quite a cultural leap from the oncology unit to the hospice. It was not a leap that Susan Sontag or Christopher Hitchens, for example, would have made, but more about that later.

  HAPPY AT HOME?

  Dying at home has become a kind of middle-class ideal, but may not be suitable for everyone. Many patients and their families cannot cope at home if the illness ravages them with incontinence, confusion, terror and pain. Ann McPherson, who died in 2011, was a GP and a prominent campaigner for assisted suicide. She died of pancreatic cancer, and her daughter Tess, a dermatologist, described her mother’s death (at home) in an article for the British Medical Journal:

  On the final day the doctor was getting the syringe drivers ready when something changed in my mum’s breathing. The nurse explained that she would die soon and left us. We were with mum, and that was what she wanted. As she died her body seemed furious with its final fight, gasping to the end. With a desperate haunting shudder from mum I found myself sitting in pools of expelled fluid. That was not what she wanted. Mum had seen this happen before and wanted it avoided for future patients and their families. It is simple: the law needs to change to allow terminally ill but mentally compete
nt people the right to a more dignified death than my mum was allowed.

  Whatever one’s view on the law (which I will examine later), I was struck after reading this piece that Ann McPherson should have died in a hospice, not at home. Having doctors in the family is not always an advantage − dermatology may not be the ideal professional background for such a task. McPherson’s daughter could not assess the situation objectively and may have felt a pressure to care for her mother herself at home, when hospice admission was clearly required. Perhaps what Ann McPherson needed was for a hospice to take over, not a change in the law.

  Raymond Tallis became chairman of Healthcare Professionals for Assisted Dying (HPAD) after McPherson’s death. He believes that a minority of dying people are ‘suffering unbearably, despite receiving optimal palliative care’. He argues that starvation and dehydration and continuous sedation are ploys used to get around the prohibition on assisted dying, and are a ‘clinical, ethical and legal fudge’. It pains me to disagree with Tallis, since I admire him so much, but I cannot recall a single patient, in over thirty years of practice at the front line, who I wished I had been able to ‘assist’.

  My father-in-law died at home in October 2013. His condition had deteriorated rapidly over that autumn, and by late September the local GP practice nurses installed a hospital bed in the front room of his house. He was relieved to take to the bed, and never left it, dying two weeks later. My wife had travelled to Scotland on many weekends over the year after his diagnosis, and was there for her father’s final weeks. I arrived with our two children two days before he died. By that time, he had been started on morphine, given slowly and steadily by the syringe-driver, mainly for his pain, but also for terror. When we arrived, he was semi-conscious. He struggled on for two more days, his breathing becoming more and more laboured. There were frequent episodes of apnoea (when breathing temporarily stops); when he finally died, we weren’t sure initially if this wasn’t just another apnoeic attack. (This pattern of breathing in the dying is known as Cheyne-Stokes respiration, after the two Dublin physicians who described it.)