The Way We Die Now (23 page)

The eldest of his three surviving sisters, a nun, sat with him, hour after hour, and prayed. Exhausted, she was eventually persuaded by my brother to take a break and have a meal. My wife (Scottish Catholic) and sister-in-law (Bavarian Lutheran) took her place, and he died shortly after. My aunt bitterly regretted missing the moment of his death. Shortly after, the family gathered around him in the room and said the Rosary. His funeral was a lavish, public affair, which would not have shamed a head of state.

My father-in-law, too, was sustained by his faith. A few days before he died, the parish priest came to give him the Last Rites, and hear his confession. He told the priest that he didn’t want to die, but was ready.

My own generation, let down both by organized religion and frenetic materialism, does not enjoy the consolations of faith. The Ireland I grew up in was a theocracy in all but name; the Ireland I came back to in 2001 reminded me of ‘Pleasure Island’ in Disney’s
Pinocchio.
In the space of a generation, the power of the Catholic Church had collapsed, probably forever. Shortly after that, the chimera that was the Celtic Tiger disappeared. The resulting spiritual and moral vacuum has not been filled. Fear of death has replaced fear of God.

Medical knowledge is, or should be, a huge advantage when facing death. We know how it goes. We can decode the smooth words of the oncologist. We understand the implications of any given diagnosis. This should help – shouldn’t it? Did Kieran Sweeney’s knowledge make it any easier for him? I like to think that when faced with my own inevitable endgame, my medical knowledge will at least spare me the indignities of self-delusion and futile treatments. I wonder. A 2003 study from Johns Hopkins University examined doctors’ preferences for their own care at the end of life. Most had an advance directive. The overwhelming majority did not want cardio-pulmonary resuscitation, dialysis, major surgery or PEG feeding. They were unanimous in their enthusiasm for analgesic drugs. The uncomfortable conclusion of this study is that doctors routinely subject their patients to treatments that they wouldn’t dream of having themselves. The Kansas-based pathologist Dr Ed Friedlander proudly sports a tattoo on his chest saying ‘No CPR’.

An American doctor, Ken Murray, wrote an article called ‘How Doctors Die’ in 2011:

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. The surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year survival odds – from 5 per cent to 15 per cent – albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

It’s not a frequent topic of discussion, but doctors die, too. And they don’t die like the rest of us. What’s unusual about them is not how much treatment they get compared to most Americans, but how little. For all the time they spend fending off the deaths of others, they tend to be fairly serene when faced with death themselves. They know exactly what is going to happen, they know the choices, and they generally have access to any sort of medical care they could want. But they go gently.

Not all doctors, however, display Charlie’s matter-of-fact stoicism. A doctor acquaintance of mine, diagnosed with inoperable cancer, underwent several courses of chemotherapy, all of them complicated by horrific side effects, and believed right to the end that he would recover and return to his practice. He died on an acute medical ward, having refused to engage with the palliative care services, which he regarded as ‘throwing in the towel’.

One of my former bosses, a distinguished academic, became suddenly very sick at the age of fifty-seven. He died in hospital within a few weeks, of unsuspected pancreatic cancer. After his death, the task of clearing out his office fell to one of his colleagues. He was notoriously disorganized and untidy, but, to his colleague’s surprise, everything in the office was neatly filed. Clearly he had either known, or had a premonition of, his condition, but had told no one. The succession was easy and orderly.

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Albert Camus thought that life was meaningless, its only consistent attribute being absurdity. Human beings torture themselves by trying to find meaning where there is none. Religion is the greatest expression of this quest for meaning. We look for meaning in everything: as children we look for patterns in clouds and paving stones. Life looks easier if it is viewed as a story with a narrative and a theme. Far from being terrified by this meaninglessness, Camus suggests that we should embrace it, because ultimately that is where freedom lies. Few of us, however, have the existential clarity and courage of Camus: having to be the author of your own script for living and dying is an intolerable burden for most modern secular people. We have fetishized choice but, like children, we long for boundaries and rules.

Death, as I have seen it, is more often marked by pain, fear, boredom and absurdity than it is by dignity, spirituality and meaning. What are we to do? Our problem with death is that, compared to our ancestors, we live so long. We know, in theory, that we must die, but we have banished death from our thoughts.

Rolf Zinkernagel, a Swiss immunologist who won the Nobel Prize in Physiology or Medicine in 1996, believes that the lifespan of human beings has far exceeded what it was intended for: ‘I would argue that we are basically built to reach 25 years of age. All the rest is luxury.’ Wealthy older Americans spend a lot of time and money maintaining their health and postponing death. Dinner-party conversations centre on colonoscopies, statins (drugs which reduce blood cholesterol) and new diets. Many lay Americans subscribe to the
New England Journal of Medicine.
I have noticed a similar trend in well-off, older acquaintances of mine: health, and its maintenance, has become their hobby. All quite laudable, but let’s take this trend to its logical conclusion. What are the consequences for society if average life expectancy rises to a hundred, or even more? We have already seen radical changes to pension provision as life expectancy increases and the birth-rate (among white Europeans) falls. We face the prospect of an army of centenarians cared for by poorly paid immigrants. The children of these centenarians can expect to work well into their seventies, or even eighties. The world of work will alter drastically, with diminishing opportunities for the young.

What if powerful new therapies emerge which can slow down the ageing process and postpone death? Undoubtedly it will be the rich and powerful who will avail themselves of them. Poor people in Africa, Asia and South America will continue to struggle for simple necessities, such as food, clean water and basic health care. There will be bitter debates about whether the state should fund such therapies. The old are a powerful lobby group and, compared to the young, are far more likely to vote, and thus hurt politicians at the ballot box. We have seen politicians in the UK and Ireland performing U-turns on social provision for the old after concerted political action by that constituency. Politicians and policy-makers mess with welfare provision for the old at their peril. The baby-boomers of rich Western countries are now in their sixties and seventies, and are aiming for a different kind of old age to their parents. They demand a retirement that is well funded, active and packed with experience. They are unfettered by mortgage debt and are the last generation to receive defined benefit pensions. The economic downturn of the last several years has only strengthened their position. They are passionate believers in the compression of morbidity.

But this vision of ageing is wishful thinking. Many now face an old age where the final years are spent in nursing homes. There are several societal reasons for this: increased longevity, the demise of the multi-generational extended family and the contemporary obsession with safety. None of us wants to spend the end of our life in a nursing home; they are viewed (correctly) as places which value safety and protocol over independence and living. There have been several nursing-home scandals in Ireland over the last few years, which has led to demand for even tighter regulation and surveillance of these institutions. The use of hidden cameras (to monitor the staff) is now routinely proposed, on the grounds that inspections by government agencies are toothless, as the nursing homes are pre-warned of the inspectors’ visit. The people who work in nursing homes – commonly poorly paid, uneducated immigrants – will find themselves under constant scrutiny. The surgeon and memoirist Henry Marsh observed how working in a long-stay dementia ward when he was a student taught him ‘the limits of human kindness’. In Ireland, the nursing-home scandals have demonstrated these limits, yet we are outraged when the poor and uneducated strangers to whom we have subcontracted the task of caring for our old people are found wanting.

What are we to do? We will not see a return of the pre-industrial extended family; the future is urban, atomized and medicalized. The American bioethicist Ezekiel Emanuel (older brother of Rahm, Mayor of Chicago) outraged the baby-boomers with his 2014 essay for
The
Atlantic
, ‘Why I hope to die at 75’. He attacked what he called ‘the American Immortal’: ‘I think this manic desperation to endlessly extend life is misguided and potentially destructive. For many reasons, 75 is a pretty good age to aim to stop. Americans may live longer than their parents, but they are likely to be more incapacitated. Does that sound very desirable? Not to me.’

Auberon Waugh (who died aged sixty-one), son of Evelyn Waugh (who died aged sixty-two), once remarked: ‘It is the duty of all good parents to die young.’ Montaigne put it like this: ‘Make room for others, as others have made room for you.’

Charles C. Mann wrote an essay in 2005 for
The Atlantic
called ‘The Coming Death Shortage’, which envisaged a future ‘tripartite society’ of ‘the very old and very rich on top, beta-testing each new treatment on themselves; a mass of ordinary old, forced by insurance into supremely healthy habits, kept alive by medical entitlement; and the diminishingly influential young.’ Mann cites the case of Japan, where one in three men over the age of sixty-five is still in full-time employment; the Japanese are ‘tacitly aware’ that the old are ‘blocking the door’. Meanwhile, one in three young adults is either unemployed or working part-time, leading lives of ‘socially mandated fecklessness’. The American philosopher and physician Leon R. Kass predicts a future of ‘protracted youthfulness, hedonism, and sexual licence’.

I am broadly in agreement with Kass and Mann that ever-increasing longevity is bad for society, but the problem is this: given the opportunity of a few extra years, would I take them? Of course I would. There is an old joke: ‘Who wants to live to be a hundred? A guy who’s ninety-nine.’ And this problem of the interests of the individual clashing with the interests of society runs right through modern medicine, as we have seen with cancer treatment and assisted suicide. The menu of options is increasing all the time, and it looks so attractive.

We are familiar with the contemporary hubristic and bellicose use of military metaphor: the war on this, the battle against that. We regularly hear outlandish calls to arms: Prime Minister David Cameron has pledged that ‘a cure for dementia’ will be found within ten years. This is as likely to be successful as Richard Nixon’s ‘War on Cancer’. William Haseltine, Chief Executive Officer of Human Genome Sciences, claimed in 1999 that ‘death is nothing more than a series of preventable diseases’. However, neither the Human Genome Project nor stem-cell technology has so far delivered the cures that had been predicted, though biomedical research grows in size and scope. The biomedical research industry is just that: a business, not an exercise in altruism.

Medicine has taken much of the credit, but longevity in developed countries has increased owing to a combination of factors, which include not only organized health care, but also improved living conditions, disease prevention and behavioural changes, such as reductions in smoking. Interestingly, the maximum human lifespan has remained unchanged at about 110–120; it is average longevity which has increased so dramatically. Where do we draw the line and call ‘enough’? We can’t. John Gray has eloquently argued that although scientific knowledge has increased exponentially since the Enlightenment, human irrationality remains stubbornly static. Science is driven by reason and logic, yet our use of it is frequently irrational. Does this phenomenon have any relevance to my daily work as a doctor? Well yes, it does. Irrationality pervades all aspects of medicine, from deluded, Internet-addled patients and relatives, to the overuse of scans and other diagnostic procedures, to the widespread use of drugs of dubious benefit and high cost. Cancer care, as we have seen, has been described as ‘a culture of medical excess’. Overuse and futile use is driven by patients, doctors, hospitals and pharmaceutical companies. The doctor who practises sparingly and judiciously has little to gain either professionally or financially.