The Way We Die Now (17 page)

...I think there’s a wonderful rule of life that means that we do not consider our own mortality. I know we seem to, and remember, ‘man, thou art but dust’, but I don’t believe we do. I believe there’s an absolute difference between knowing you are likely to die, let’s say within the next year, and not knowing when you are going to die – an absolute difference...

Marian Finucane began to get a little alarmed by the tone of the interview: ‘If there are people who have cancer or loved ones who have cancer and passionately believe that the treatments are going to work for them, there is a possibility that this could cast a despair over them.’ O’Faolain replied imperiously: ‘My despair is my own, their hope is their own... My way of looking at the world is my own. We each end up differently facing this common fate. I wish everybody out there a miracle cure... I thought there would be me and the world, but the world turned its back on me.’

O’Faolain was shocking, not just for her honesty, but for her rebellion against the notions that cancer must be ‘battled’ to the bitter end, and that dying should be, in some way, a phase of personal growth, a ‘spiritual’ experience. She was genuinely surprised by the response to the interview, which was overwhelmingly one of goodwill, and offers of help. O’Faolain later remarked that she had not realized there was so much goodness in people. She had mentioned in the interview how she had left new, expensive curtains in New York which she would never get to use: several listeners offered to go to her apartment and bring them back to Ireland. A neighbour cleaned out her house and put down a fire. O’Faolain was so overwhelmed that she planned to do a second interview, ‘to redress the balance’, but she died soon after. Shortly before her death, she visited Berlin with her friend, the writer Hugo Hamilton. He wrote a lightly fictionalised account of this trip called
Every Single Minute.

*

Of all these stories, O’Faolain’s is the one that is most true. Her vivid acceptance of
how it is
is bracing. Her despair is her own – death is only affliction. Unlike Hitchens and Sontag, she rejected the bright hopes offered by oncology. Like Sontag, she raged against death and refused to give us childish bromides about the spirituality of dying. Unlike Sontag, she confronted and acknowledged her mortality. I have come to admire her.

I am, I confess, an oncology apostate. Cancer treatment seems to offer some patients a toxic combination of false hopes and a bad death. Even those within oncology, or the ‘cancer community’ as they sometimes call themselves, accept that the current model of cancer care in developed countries has now become unaffordable and unsustainable. The Lancet Oncology Commission (not exactly a cranky fringe group, but a gathering of the great and the good of modern oncology) produced a lengthy report in 2011, a few months before Christopher Hitchens died, called ‘Delivering Affordable Cancer Care in High-income Countries’. The Commission concluded that cancer care is in crisis, driven by over-use and futility, and that ‘the medical profession and the health-care industry have created unrealistic expectations of arrest of disease and death. This set of expectations allows inappropriate application of relatively ineffective therapies, including surgery, in the name of care. In developed countries, cancer treatment is becoming a culture of excess.’ The American Society of Clinical Oncology found that as many as 10 to 15 per cent of patients with cancer receive chemotherapy in the last two weeks of life. Much cancer treatment – particularly chemotherapy – is given for no better reason than the need to be seen to ‘do something’. A good deal of therapeutics is founded on the naïve assumption that there is a treatment for every ill. The physician and writer Richard Asher glumly admitted that ‘it is better to believe in therapeutic nonsense, than to openly admit to therapeutic bankruptcy’. As a placebo and a ritual, chemotherapy comes at a high price.

Any attempt at reasoned debate is trumped by the emotive examples of individuals with cancer. In 2012, the Irish Health Service decided not to fund treatment of advanced melanoma (skin cancer) with a new, very expensive drug called ipilimumab. A distinguished professor of pharmacology & therapeutics went on national radio to explain that this drug benefited a small minority of patients, at an exorbitant cost (€85,000 per patient), and that he therefore could not recommend its funding by the Irish government. Days later, a woman with advanced melanoma was also interviewed on national radio. The story was heartbreaking: this woman, aged forty-one, had three young children; her oncologist had advised her that this new drug was her only hope. The next day, on the instruction of the Minster for Health, the Irish Health Service Executive reversed its decision on ipilimumab and agreed to fund treatment for sixty patients, including this woman. She died three months later.

One of the root causes of this crisis in cancer care is sentimentality. I am often told by well-meaning family members that their stricken relative is a ‘fighter’, by which they mean that the known biological statistics appropriate to other, lesser souls, do not apply in this particular case. Lance Armstrong persuaded many cancer sufferers, including the singularly unsporty Susan Sontag, that cancer could be ‘beaten’ by sheer force of will. This kind of sentimentality is at the root of Maurice Saatchi’s impotent rage against the disease that took his wife’s life.

The American science writer George Johnson observed of this sentimentality in
The Cancer Chronicles
(2013): ‘Now there is a cancer culture, and whether you had a harmless in-situ carcinoma removed with a simple lumpectomy or are fighting the terminal stages of metastatic melanoma, you are called a survivor. In the first case there was nothing to survive. In the second case there will be no survival.’ The Irish Cancer Society has launched an ‘ambitious new strategy statement’ for 2013 to 2017 entitled
Towards a Future without Cancer
. They modestly concede that ‘this may not be achieved in the lifetime of this strategy statement’. Cancer Research UK’s current campaign proclaims: ‘We
will
beat cancer.’

As far back as 1993, Christopher Hitchens wrote about biogenetics in
Vanity Fair
: ‘One need not be Utopian about biogenetics, which like any other breakthrough can be exploited by the unscrupulous.’ When I was a junior research doctor in the late 1980s, my colleagues used to joke that inclusion of the phrase ‘genetic polymorphism’ in the title was enough to get any scientific paper published. Since the 1980s, molecular biology/genetics has been the dominant force in laboratory medicine and has been lavishly funded by government agencies. There is now, however, a grudging acceptance in the scientific and medical communities that, despite all the advances in genetics, including the sequencing of the entire human genome, there have been precious few applications for treatment of cancer and other serious diseases.

In 2000, Bill Clinton announced the completion of the £3 billion Human Genome Project. Francis Collins, then head of the National Human Genome Research Institute, predicted that a new era of ‘personalized medicine’ would emerge by 2010: genetic tests would routinely identify an individual’s risk for various common diseases. Genetics would provide powerful new treatments for cancer and guide treatment in individual cases. This, as we know, and as Christopher Hitchens and Maurice Saatchi discovered, hasn’t happened. The returns on cancer genomics have been very modest indeed, considering the investment. Although basic science has benefited from the Human Genome Project, cancer treatment has seen relatively few improvements.

Steve Jones, Emeritus Professor of Genetics at University College London, admitted as much in 2009, when he wrote: ‘We thought it [genetic research] was going to change our lives but that has turned out to be a false dawn.’ He went on to suggest that too much money had been spent on genetic research, and that such scarce funding would be better used elsewhere. Many took issue with Jones’s nihilism, but most agreed that genetics has not led to the advances that had been hoped for.

Cancer is a privileged disease. If there is a bed crisis at my hospital, all ‘non-cancer’ elective activity is commonly cancelled. Only cancer is immune to the quotidian realities of an over-stretched, state-funded medical system. I worked in the NHS when the ‘two-week cancer rule’ was introduced: any patient with suspected cancer had to be seen at a specialist clinic within two weeks. The definition of ‘suspected cancer’ was highly nebulous and included indigestion in anyone over the age of fifty. Overnight, an entire new bureaucracy sprung up to deal with this diktat. Non-cancer doctors have watched and learned, and as specialties have to compete with each other for finite resources, the phenomenon of ‘my disease is better than your disease’ has emerged. My younger colleagues now regard public relations as part of their job. Every disease has a patient support group (frequently funded by pharmaceutical companies), and specialist medical societies employ marketing and PR advisers. Cystic fibrosis is the perfect example of ‘my disease is better than your disease’: the victims are young and the condition is not self-induced. The other ‘good’ diseases are breast cancer and anything affecting children. My particular end of the medical swamp is unfashionable and under-funded. Alcoholic liver disease doesn’t induce much public sympathy; we don’t have a celebrity liver cirrhosis sufferer to lead a campaign.

*

The stories of Christopher Hitchens and Susan Sontag tell us much about the reality of dying from cancer. Both of them were enthusiastic believers in modern scientific oncology and especially in the personal powers of their oncologists. Would Maurice Saatchi have been more reconciled to his wife’s death, I wonder, had Stephen Nimer been her oncologist?

It is not my intention to mock Hitchens and Sontag; what might be right for mankind, or society, is rarely what is right for me. Christopher Hitchens abandoned his lifelong and celebrated scepticism when faced with cancer. Were I to be faced with a diagnosis of stage IV oesophageal cancer, or MDS, I do not know how I would react, particularly if I were treated by an oncologist with such a powerful personality as Stephen Nimer. I might be inspired by the story of Stephen Jay Gould, the palaeontologist and writer. In 1982, Gould was diagnosed with the rare cancer, primary peritoneal mesothelioma. (Mesothelioma, as in Kieran Sweeney’s case, usually affects the lung.) Gould, being a scientist, examined the statistics and literature on this cancer and found to his horror that the median survival was eight months – that is, 50 per cent of patients were dead at eight months after diagnosis. Gould wrote a famous essay, ‘The Median Isn’t the Message’ (1985):

When I learned about the eight-month median, my first intellectual reaction was: fine, half the people will live longer; now what are my chances of being in that half. I read for a furious and nervous hour and concluded, with relief: damned good. I possessed every one of the characteristics conferring a probability of longer life: I was young; my disease had been recognized in a relatively early stage; I would receive the nation’s best medical treatment; I had the world to live for; I knew how to read the data properly and not despair.

Gould noticed, too, that the survival ‘bell-curve’ was not symmetrical, that it was ‘right-skewed’, with a small minority of long-term survivors:

I saw no reason why I shouldn’t be in that small tail, and I breathed a very long sigh of relief. My technical knowledge had helped. I had read the graph correctly. I had asked the right question and found the answers. I had obtained, in all probability, the most precious of all possible gifts in the circumstances – substantial time.

Gould survived for another twenty years, dying of an unrelated cancer. The vast majority of patients with cancer are not so lucky, but our medical system is based around the assumption that everyone with cancer might, just might, be ‘in that small tail’ of long-term survivors. Treatment is aimed at that tiny minority, not the great majority, who are not as fortunate as Stephen Jay Gould. And yet, and yet... Gould argued: ‘It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity... I prefer the more martial view that death is the ultimate enemy – and I find nothing reproachable in those who rage mightily against the dying of the light.’

The Battle against Cancer is often described in military terms; Atul Gawande uses a military analogy of a different kind to describe the treatment of patients with incurable cancer:

And in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer, you want Robert E. Lee, someone who knows how to fight for territory that can be won and how to surrender when it can’t, someone who understands that the damage is greatest if all you do is battle to the bitter end.

Oncology, unfortunately, has more Custers than Lees.

*

An acquaintance of mine was diagnosed with lung cancer in his fifties. He underwent surgery and was well for about four years. But the cancer returned and he was found to have multiple secondary deposits in his bones. He was sent to the oncologist, who told him: ‘We can treat this.’ Technically true, but what the oncologist meant was: ‘We can give chemotherapy for this, but it won’t cure you.’ His patient heard: ‘We can cure this.’ This is also what his wife and adult children heard. His condition gradually worsened until he was unable to work, or even get up from the chair. His wife (with whom he had a difficult relationship) even suspected that he was somehow malingering. Then, as so often happens, he had a sudden, acute deterioration. The oncologist admitted there was nothing more she could do and advised admission to the local hospice, where he died a few days later. My point is this: had the oncologist had the courage to be more honest, he and his family might have had a more realistic expectation of the future. True, the man might still have opted for chemotherapy, but would have been aware of its likely modest benefit. His family might have been more supportive. He might have had the opportunity to settle his affairs and be reconciled with his wife.