The Way We Die Now (12 page)

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.

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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 treated 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?

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.

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 competent 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.)

My father-in-law managed to die at home, but I’m not sure if that was what he wanted. He hated the thought of his grandchildren seeing their once omnipotent Papa so diminished. There were episodes when his body let him down, which were deeply distressing to him. His wife, exhausted and bewildered, accompanied him to the end. His dying at home was partly dictated by the fact that there was no local hospice, only a designated ward in the local district general hospital.

Although a small minority of people in Britain and Ireland die in a hospice, half of all people dying in the US do so. Intriguingly, and predictably, money is the main reason. A now-famous study from the Massachusetts General Hospital randomly assigned patients with stage IV lung cancer to two types of treatment. Half of the patients had the standard cancer (oncology) care, half had standard cancer care combined with palliative (hospice) care. The patients who had the combined oncology/palliative care did better in every conceivable way: they stopped chemotherapy sooner, they were admitted to a hospice earlier, they were much less likely to have interventionist treatment or ICU admission near the end of life, and they lived, on average, 25 per cent longer. What interested the US medical insurance companies – usually the baddies in any of these stories – was that the patients who had combined care cost them much less. The insurers now actively encourage their customers to embrace hospice care at the end of life.