The Way We Die Now (14 page)

I am a supporter of the concept of hospice care. I believe, however, that ‘palliative care’ should be at the centre of what
all
doctors do. It should not be something that we delegate to death-specialists when we, the technological doctors, have run out of ideas and potential treatments. ‘Breaking bad news’ and having the Difficult Conversation is part of the job and cannot become the exclusive preserve of specialists in bad news and Difficult Conversations. I may not be as skilled, or as sensitive as Susan Block or Sean O’Mahony, but my patients should hear it from me. The doctor who knows the patient best –
their
doctor – is the right doctor to accompany him or her on the way to death, to be their
amicus mortis.

Several years ago, a man in his mid-sixties was admitted, as an emergency patient, under my care with chest pain and shortness of breath. He lived alone, in a remote rural area. He had been undergoing treatment (radiation and chemotherapy) for cancer. This treatment had been agreed and coordinated by a special cancer multidisciplinary team, which included a surgeon, a radiation specialist and an oncologist. The chest X-ray I ordered showed cancer deposits throughout both lungs. On my next ward round, the man asked me what was happening, what did the X-rays show? I told him. ‘How could this be?’ he asked me. ‘My doctor told me the chances of cure were nearly 100 per cent!’ He was dismayed that he had been abandoned by the doctors (‘the multidisciplinary team’) who had treated him for several months, and that the unpleasant task of telling him the truth had been foisted on a doctor he had first met two days ago.

Medical schools are now expected to impart communication skills and foster empathy. But can we teach empathy? Narrative medicine claims to do so. As an example of narrative medicine in practice, Rita Charon cites an encounter with a woman with Charcot-Marie-Tooth disease, a hereditary neurological disorder. She learns that the patient’s seven-year-old son has started to show signs of the disease, and she is ‘engulfed by sadness as she listens to her patient... the physician grieves along with the patient, aware of how disease changes everything, what it means, what it claims, how random is its unfairness, and how much courage it takes to look it full in the face’. We learn that, in a subsequent visit, Charon gives the patient a piece she has written about their previous encounter and reports that the patient ‘felt relieved that her physician seemed to understand her pain’. ‘She can listen at a different level,’ says an admirer. Practitioners and students of narrative medicine are encouraged to see the clinical consultation as a story, set against a complex backdrop of personal history, culture, ethnicity, gender and economic status. Students are taught the skills of ‘narrative competency’. Literature is mined for examples of the experience of illness. Reading and writing groups encourage students and doctors to write their own narratives about their patients and their jobs, and they may even − à la Rita Charon – encourage patients to read what they have written about them.

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.’

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 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 immediate 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.