The Way We Die Now

by Seamus O'Mahony

  The narrative medicine movement has achieved pre-eminence within the field of medical humanities. For many within the medical profession, however, narrative medicine provokes mockery and contempt for its smugness, its pretension and its risible, strangely biblical jargon (‘honouring’, ‘witnessing’, ‘professing’). It encourages doctors to stray from their core professional duties into uncharted waters, to take on roles such as spiritual adviser, social worker, life-coach, friend. Vulnerable patients may develop unrealistic expectations of doctors, hopes that will inevitably be disappointed. And it is not only patients who lose out. Impressionable medical students may feel themselves to be failures if they do not manage to match the superhuman empathy of a Rita Charon. Doctors who are not ‘engulfed with sadness’, or who fail to ‘grieve’ with their patients, may be encouraged to undergo training in ‘narrative competency’. Doctors should – and generally do – treat their patients with courtesy, dignity and kindness. It is inevitable that they sometimes fall short in this regard and fail to show grace under the intense pressure of modern practice. The narrative medicine imperative to express an empathy which the doctor may or may not feel cheapens, undermines and coarsens the relationship between patient and doctor. Older, more stoically inclined patients in particular may find this form of engagement with their doctor vulgar, embarrassing and intrusive.

  ‘Empathy’ implies that we can feel what someone else is feeling, which, of course, we generally can’t. Kindness is different: it is possible, for example, to be kind to someone one doesn’t feel empathy with. Kindness is a more honest currency; it was the ingredient that was most singularly lacking in the care of patients at Stafford Hospital.

  I have seen enough of the kind of death that happens in acute hospitals to know that, when my time comes, I will embrace wholeheartedly the rituals of hospice care and place myself in the tender care of Marymount Hospice. I will gladly accept the ministrations of natural healers and kinesiologists. I will, if I am able, attend art classes. I will pray to whatever God is listening to me. I will not be slow in asking for morphine. I will not, however, expect the doctors there to ask me about my existential anxieties, or to engage with me on my spiritual life.

  Palliative care – and medicine generally – is often accused of ‘medicalizing’ death. But a certain degree of medicalization is necessary. The correct use of drugs and the relief of distressing symptoms are skills that doctors (particularly palliative care doctors) bring to the care of the dying. What I have argued against is over-medicalization of dying. Palliative care has achieved much since Cicely Saunders opened the hospice at St Christopher’s: many people were relieved of suffering that was commonplace in the relatively recent past. But the specialty somehow stands outside, rather than within, the medical mainstream.

  I recently dined with an old friend, who worked for many years as a palliative care physician. She is ambivalent about the specialty: ‘The notion of a “good death” is endlessly debated as something desirable and achievable. Yet this notion is hugely subjective, poorly understood, and quite probably not a generalizable concept. How we die reflects how we live, and palliative care has, I believe, misguidedly set the “good death” as its guiding aim.’ My friend also admits ruefully to believing that, when she entered the specialty in the late 1980s, its success would eventually lead to its demise: if all doctors were properly educated in care of the dying and the relief of suffering in people with incurable disease, specialists in palliative care would no longer be required. She reflected: ‘I was wrong. Palliative care has become a powerful force in its own right, one that has achieved and continues to achieve so much in terms of the relief of suffering for so many. Yet I remain troubled. The speciality increasingly sees itself as exclusively all-knowing, and territorial, about how we die.’

  CHAPTER 6

  Celebrity Cancer Ward

  Death from cancer is qualitatively different from death due to other causes, so much so, that up until quite recently, hospices cared almost exclusively for people dying from this disease (or diseases). Dying of cancer, of course, is no more unpleasant than dying of, say, heart failure or emphysema. In fact, death from cancer may be better than death from other diseases. The Quality Standards for End-of-Life Care in Hospitals from the Hospice Friendly Hospitals Programme in Ireland summarized the findings of an audit: ‘A hierarchy exists in the quality of dying in Irish hospitals, based on the patient’s disease. The range, from best to worst, is: cancer, circulatory diseases, respiratory diseases, dementia/frailty.’ Richard Smith, former editor of the British Medical Journal, provoked outrage when, in 2014, he made the same observation and suggested that we should ‘stop wasting billions trying to cure cancer’.

  The most feared of all diseases, cancer used to be unmentionable and was called ‘the big C’. Now, we hear about it constantly. We are urged to assist the ‘fight against cancer’ by ‘raising awareness’ or by donating money. We are reminded that famous, rich and talented people get cancer too, and their experiences are commonly shared with us, by themselves or by their survivors. Even the language is different: people afflicted with the condition are expected to ‘fight’ it; when they die, they are said to have ‘lost their battle’. Cancer is seen as an alien invader, which reflects the vocabulary of the disease: ‘spreading’, ‘metastasizing’, ‘invasive’, ‘aggressive’, ‘riddled’. And cancer also carries the stigma for patients of having brought it on themselves, by smoking, drinking too much alcohol, eating a bad diet or being overweight. Cancer inspires more fears and fantasies than any other cause of disease and death.

  *

  Simon Hoggart was diagnosed with pancreatic cancer in June 2010. Hoggart, a parliamentary sketch writer with the Guardian, was a witty journalist, who also chaired BBC Radio 4’s The News Quiz and wrote amusingly about wine for the Spectator. His father Richard, who survived Simon by three months, was a distinguished academic and cultural commentator, author of the landmark The Uses of Literacy. Simon, for all his talents, devoted his energies to more frivolous projects.

  Pancreatic cancer has a dismal prognosis: most patients are dead within a year of diagnosis. Hoggart’s cancer had spread to his spleen and lungs by the time he was diagnosed, but he survived for three and a half years, having had ‘cutting-edge’ treatment at the Royal Marsden Hospital in London. Unusually, Hoggart made the decision not to publicize his condition. His daughter Amy wrote in the Guardian after his death:

  ‘You’ve got to get a joke out of it’ was the main piece of advice he gave me about writing. In the end, his big idea was for a TV show idea called ‘Celebrity Cancer Ward’, inspired by the few well-known figures he bumped into during treatment. Dad would host it and each episode would track the progress of the well-known contributors’ progress. Unsurprisingly, this was never seriously pitched. But I’m mentioning it in print here, so we will all know whose idea it originally was if it ever gets made, which it shouldn’t.

  It is entirely possible that such a show could get made; reality TV has reached parts of human experience we never thought would be presented to us as entertainment, and people’s willingness to sacrifice their privacy and dignity is truly astonishing. Hoggart did not want to be defined by this illness, and deliberately chose not to follow the example of other famous cancer victims, such as John Diamond, Philip Gould, Christopher Hitchens and Jenny Diski: ‘I didn’t want people thinking of me as Cancer Victim, Simon Hoggart, smiling through his pain.’

  CHRISTOPHER HITCHENS:

  ‘A RADICAL, CHILDLIKE HOPE’

  Christopher Hitchens had been a prolific journalist and public intellectual for more than three decades when he finally achieved the global fame he so richly deserved following the publication of God Is Not Great in 2007. ‘Hitch’ had been a swaggering figure in literary and political circles for many years before this. He was a provocative polemicist who savaged the reputations of Henry Kissinger, Bill Clinton and Mother Teresa. A brilliant speaker and debater, he had the gift of the immedi
ate and apposite retort. (Simon Hoggart had advised him, early in his career, to ‘write more like you talk’.) He moved to the US in the 1980s. After the success of God Is Not Great, Hitchens joined the premier league of celebrity atheist intellectuals. While Richard Dawkins was perceived as arrogant, humourless and hectoring, even his opponents admired Hitchens’s wit, his preternatural fluency and his cheek. Although wildly inconsistent and self-contradictory, he never confessed to a moment’s doubt.

  When Hitchens was diagnosed with oesophageal cancer, it came as no great surprise, the major risk factors for the condition being smoking and heavy drinking, both of which he cheerfully admitted to: ‘Knowingly burning the candle at both ends and finding that it often gives a lovely light... I have now succumbed to something so predictable and banal that it bores even me.’ His ‘rackety, bohemian life’ finally caught up with him in June 2010 when, during a tour to promote his memoir, Hitch-22, he was taken acutely ill in his hotel bedroom (‘feeling as if I were actually shackled to my own corpse’), whisked off to the nearest emergency room and diagnosed with stage IV oesophageal cancer (‘the thing about Stage Four is that there is no such thing as Stage Five’): the cancer had spread, or metastasized, to his lungs and the lymph nodes in his neck. Following this diagnosis, Hitchens wrote a series of articles about his illness for Vanity Fair, to which he had been a contributor for many years. These articles were collected, edited and book-ended by moving tributes from his wife Carol Blue and his editor Graydon Carter. This little book is simply called Mortality.

  Hitchens’s beliefs about his advanced cancer and its treatment were, for a man whose fame rested on his scepticism, uncharacteristically optimistic. While he admitted that he would be very lucky to survive, he steadfastly hoped, right to the end, that his particular case of advanced cancer might lie on the right side of the bell-shaped curve of survival statistics. He famously mocked religious folk for their faith in supernatural entities and survival of the soul after bodily death, yet the views expressed in Mortality are just as wishful. ‘The oncology bargain’, wrote Hitchens, ‘is that in return for at least the chance of a few more useful years, you agree to submit to chemotherapy and then, if you are lucky with that, to radiation or even surgery.’ Over the years, I have diagnosed many patients with oesophageal cancer. ‘Years’ is a word not generally used when discussing prognosis in stage IV oesophageal cancer; ‘months’, in my experience, is a more pertinent term.

  Although Hitchens was bracingly dismissive of the absurd notion of ‘battling cancer’, he was childlike in his enthusiasm for modern American oncology: ‘For example, I was encouraged to learn of a new “immunotherapy protocol”, evolved by Drs Steven Rosenberg and Nicholas Restifo at the National Cancer Institute. Actually, the word “encouraged” is an understatement. I was hugely excited.’ He contacts Dr Restifo, who responds enthusiastically: ‘Some of this may sound like space-age medicine, but we have treated well over 100 patients with gene-engineered T cells, and have treated over 20 patients with the exact approach that I am suggesting may be applicable to your case.’ Hitchens’s hopes were dashed, however, when it turned out that his immune cells did not express a particular molecule (HLA-A2) which must be present for this pioneering treatment to work: ‘I can’t forget the feeling of flatness that I experienced when I received the news.’

  His hopes were raised again when he was emailed by ‘perhaps fifty friends’ about a television programme called 60 Minutes, which ‘had run a segment about the “tissue engineering”, by way of stem cells, of a man with a cancerous esophagus. He had effectively been medically enabled to “grow” a new one.’ Hitchens’s friend, Francis Collins, molecular biologist and devout Christian, head of the Human Genome Project, ‘gently but firmly told me that my cancer had spread too far beyond my esophagus to be treatable by such a means’. Ironically, it is the Christian who had to lower the expectations of the sceptical atheist. Hitchens proposed to Collins that his entire DNA, along with that of his tumour, be ‘sequenced’, ‘even though its likely efficacy lies at the outer limits of probability’. Collins was circumspect, conceding that if such ‘sequencing’ was performed, ‘it could be clearly determined what mutations were present in the cancer that is causing it to grow. The potential for discovering mutations in the cancer cells that could lead to a new therapeutic idea is uncertain – that is at the very frontier of cancer research right now.’ Collins pointed out a more prosaic reason for not having his genome ‘sequenced’, namely that ‘the cost of having it done is also very steep at the moment’.

  Mortality contains vintage Hitchensian demolitions of such received wisdoms as ‘battling’ cancer:

  People don’t have cancer: they are reported to be battling cancer. No well-wisher omits the combative image: You can beat this. It’s even in obituaries for cancer losers, as if one might reasonably say of someone that they died after a long and brave struggle with mortality. You don’t hear it about long-term sufferers from heart disease or kidney failure.

  He dismissed this notion of struggle: ‘the image of the ardent soldier or revolutionary is the very last one that will occur to you. You feel swamped with passivity and impotence: dissolving in powerlessness like a sugar lump in water.’ An admirer of Nietzsche, he came to realize that the dictum ‘that which doesn’t kill me makes me stronger’ is nonsense: ‘In the brute physical world, and the one encompassed by medicine, there are all too many things that could kill you, don’t kill you, and then leave you considerably weaker.’ Despite this, Hitchens remained optimistic, and he was strongly encouraged in his optimism: ‘An enormous number of secular and atheist friends have told me encouraging and flattering things like, “If anyone can beat this, you can”, “Cancer has no chance against someone like you”; “We know you can vanquish this”.’ His wife Carol Blue and his closest friend Martin Amis shared this optimism. Amis, interviewed some months after Hitchens’s death, answered a question about his reasons for moving to New York: ‘At this point, it looked as though Christopher might well live for five or ten years more [my italics].’

  Mortality closes with an Afterword by Carol Blue, who writes: ‘Christopher was aiming to be among the 5 to 20 per cent of those who could be cured (the odds depended on what doctor we talked to and how they interpreted the scans).’ I wonder how his doctors could have given a man with stage IV oesophageal cancer such expectations of long-term survival, let alone a one in five chance of cure (which is about the survival chances for all oesophageal cancers, the lucky ones being those with very early, localized disease, not those with metastases in their lungs and lymph nodes). Carol Blue continues: ‘Without ever deceiving himself about his medical condition, and without ever allowing me to entertain illusions about his prospects for survival, he responded to every bit of clinical and statistical good news with a radical, childlike hope.’

  Hitchens recalled the absurd quixotic optimism of the Nixon-era ‘War on Cancer’, when America, fresh from conquering the moon, decided that the ‘big C’ was next. Nixon officially declared war on cancer in 1971, and confidently predicted ‘complete victory’ by 1976. No matter that declaring war on cancer makes as much sense as declaring war on death. No matter that cancer is not one, but hundreds of different diseases. Hitchens quoted a wickedly funny line from Updike’s Rabbit Redux, where Mr Angstrom Senior declares: ‘they’re just about to lick cancer anyway and with these transplants pretty soon they can replace your whole insides.’ He is assailed with well-meaning suggestions: ‘in Tumortown you sometimes feel that you may expire from sheer advice’. He is wonderfully dismissive of ‘natural’ therapies: ‘I did get a kind note from a Cheyenne-Arapaho friend of mine, saying that everyone she knew who had resorted to tribal remedies had died almost immediately, and suggesting that if I was offered any Native American medicines I should “move as fast as possible in the opposite direction”.’

  A correspondent from an (unnamed) university advised Hitchens to have himself ‘cryogenically frozen against the day when the
magic bullet, or whatever it is, has been devised’. This particular nonsense is a rather spooky modern echo of the Christian belief in resurrection, a parallel that Hitchens surprisingly failed to spot.

  Inevitably, somebody as well connected as Hitchens was advised to see the top man (or woman): ‘Extremely well-informed people also get in touch to insist that there is really only one doctor, or only one clinic.’ (A contemporary equivalent of the medieval visitations to holy shrines and relics?) He admits that he did take up this advice: ‘The citizens of Tumortown are forever assailed with cures and rumors of cures. I actually did take myself to one grand palazzo of a clinic in the richer part of the stricken city, which I will not name because all I got from it was a long and dull exposition of what I already knew...’