The Way We Die Now (8 page)

These are the words of a grown-up. There is no whiff of the ‘how to break bad news’ workshop. No sentimentality, no aversion of the eyes from the monumental and unavoidable prospect of impending death. No foolishness about ‘fighting’ the cancer, or travelling to the ends of the world to find a cure. This is what ‘breaking bad news’ is really like. Sweeney offered practical advice to doctors caring for the dying:

Thus I am dispatched to the kingdom of the sick permanently and irretrievably. This can never be a pleasant journey, but it can be made tolerable, dignified even. One’s guides in this world have a dual role: to read the map and direct you accordingly, but also to be with you on the terrain, a place of great uncertainty. When one meets the most senior clinical staff, one is left with a sense of technical competence, undermined with some notable exceptions, by
a hesitation to be brave
[my italics]. Eye contact is avoided when one strays off the clinical map on to the metaphysical territory – I am a man devoid of hope – and circumlocution displaces a compassionate exploration of my worst fears. Perhaps, as a doctor, I present an unusually severe challenge to my fellow clinicians – I am too much like them – and the horror of what lies before me deflects clinical carers from straying onto that territory. No one can imagine the unimaginable except those, like me, who are experiencing it.

But one’s journey to this bleak place can be rendered more bearable if everyone who shares a professional role at the various staging posts bears the bleakness of the terminus in mind... In the care I have received, the transactions have been timely and technically impeccable. But the relational aspects of care lacked strong leadership and at key moments were characterized by a hesitation to be brave. What I have always feared in illness was anonymity, being packaged, losing control, not being able to say ‘this is who I am’. In the end, one is left alone, here, in the kingdom of the sick.

It is telling, that in this short and powerful piece, Sweeney used the phrase ‘a hesitation to be brave’ twice. He died on Christmas Eve of the same year, 2009. He had been an original and eloquent commentator on medicine and its wider role. He drew attention to the limitations of evidence-based medicine, coining the term ‘the information paradox’ to describe the danger of information-overload distracting the doctor from his core role of relieving suffering. Here is an extract from his obituary in the
British Medical Journal
:

He later described this approach as metaphysical and in a prescient piece he wrote, ‘The clearest example of this transition to the metaphysical level occurs when someone starts to die or accepts that death is near. Here both the doctor and the patient are confronted by the question: “When is enough, enough? This”, he wrote, “will be the defining question for the next generation of practitioners.”’

Enough, indeed. A word rarely used in American medicine, where the culture of medical excess is most unbridled. Atul Gawande, the American surgeon and writer, became famous for championing safe surgical practice by adopting practices from other spheres of human activity such as the aviation industry. He writes regularly for the
New Yorker
, which published a long piece by him in 2010, called ‘Letting Go: What should medicine do when it can’t save your life?’ This article formed the basis for his 2014 book,
Being Mortal.
He described how, in the US, dying patients are routinely subjected to futile and painful medical treatments, while their doctors fail to discuss with them the inevitable outcome: ‘Patients die only once. They have no experience to draw on. They need doctors and nurses who are willing to have the hard discussions and say what they have seen, who will help people prepare for what is to come – and to escape a warehoused oblivion that few really want.’

But doctors are no longer brave enough. They increasingly see themselves as service-providers, a role that does not encourage Difficult Conversations, or a willingness to be brave. Consumerism, fear of litigation and over-regulation have conspired to create the customer-friendly doctor, who emerged when the doctor–patient relationship became recast in a quasi-commercial mould. This type of doctor, well trained in communication skills, eminently biddable, is not what Kieran Sweeney or Atul Gawande had in mind. Doctors, by the nature of their selection and training, are conformist, and the now dominant ethos of customer-friendliness has all but silenced other, dissenting, voices. There is now an insatiable appetite for medicine: for scans, for drugs, for tests, for screening. This appetite benefits many professional groups, industries and institutions. It is difficult to call ‘enough’, but a good doctor sometimes has to tell patients things they do not want to hear. Regrettably, it is much easier, in the middle of a busy clinic, to order another scan than to have the Difficult Conversation.

Doctors have a duty beyond that of pleasing the individual patient, a duty to society at large. The US has many so-called ‘concierge’ doctors, private physicians engaged by the wealthy, who are always on call to minister to the needs of their fastidious and demanding clients. The annual fee per patient is said to be as much as $30,000. The ultimate concierge doctor was Conrad Murray, the late Michael Jackson’s personal physician. Murray’s willingness to prescribe almost anything, including the general anaesthetic agent, propofol, for his wealthy and manipulative patient, eventually led to Jackson’s death.

Axel Munthe’s autobiography,
The Story of San Michele
(1929), is, in part, the story of a concierge doctor. Munthe, a Swede who had studied medicine in Paris, developed a lucrative practice, first in Paris, then in Rome, treating wealthy neurotics. Like Murray, he eventually had just one, wealthy and powerful patient, the Queen of Sweden (who was also his lover). Munthe, who had a brilliant start to his career as a medical student and young doctor, was filled with regret for the direction he had taken. Describing another concierge doctor working in Rome, Munthe wrote: ‘That I considered him an able doctor was of course quite compatible with his being a charlatan – the two go well together, the chief danger of charlatans lies there.’

*

Patient autonomy now trumps all other rights and obligations. Autonomy, however, is a useful card to play when, as often happens, particularly with the diagnosis of cancer, I am ambushed by well-meaning relatives, urging me not to tell the patient, because ‘it would kill’ them. Relatives have no formal rights as such, but commonly dictate medical care to those doctors keen on a quiet life and willing to be leaned on. Inevitably there will be instances, such as in the case of patients with dementia or those of very advanced age, where giving a diagnosis of cancer is of no benefit to them. But in most cases I believe it is my duty to tell the truth.

The difficulty, however, is this: Kieran Sweeney’s acceptance of, and confrontation of, his situation, is the exception, not the rule. He was both advantaged and disadvantaged when he was given the diagnosis of mesothelioma. As a doctor, he knew immediately what the future held in store for him, but this knowledge precluded all hope. Many of my patients lack the educational background or knowledge to fully absorb a diagnosis of something like mesothelioma. Apart at all from this ‘cognitive’ aspect, many simply do not want to know the grisly details about survival statistics and what the future might hold. As the case of Sherwin Nuland’s brother shows, it is not only relatives who wish to have the truth concealed. Many patients do not want to have the Difficult Conversation.

The entire modern hospital system conspires against those doctors willing to have this dialogue: the relatives, the chaos and noise of the environment, the techno-juggernaut of modern hospital care, the customer-friendly doctors who are happy and willing to dole out false, delusional hope, and sometimes the patients themselves, who may not want to hear what the doctor has to say. The temptation to opt for the quiet life, to avoid the Difficult Conversation, is overwhelming. And no one will ever complain. The relatives will be content, and the dying will soon be dead. Why give yourself the grief?

Society at large purports to want leadership and professionalism from doctors, but I wonder if this is really true. Leadership and professionalism involve confronting unpleasant truths, and sometimes denying people what they want (or think they want). Many doctors routinely over-diagnose, over-investigate and over-treat; these doctors are invariably described, approvingly, by their patients as ‘thorough’. Inevitably, the ‘thorough’ doctors eventually leave their dying patients mystified and abandoned when there is no chemotherapy left, no scans to order.

Sherwin Nuland bitterly regretted his funking of his duty to level with his brother when he was diagnosed with advanced colon cancer: ‘With this burden on my shoulders, I made a series of mistakes. That I made them with what seemed like the best of intentions does not mitigate how I feel about them in retrospect... I could not deny him a form of hope that he seemed to need.’

Much of the behaviour of people around the dying is characterized by sentimentality and evasion. This can take many forms: at its simplest, there are the relatives who conceal from the dying person the fact that he or she is dying. Then there are those – relatives, friends and doctors – who encourage a deluded optimism about the benefits of medical treatment. This deluded optimism is usually disguised as ‘giving hope’. Friends and family may genuinely believe in the delusion, which then becomes even more difficult to deflate. Doctors generally know what is truth and what is fantasy, yet some cynically peddle lies to their patients. This may be done with the good intention of ‘maintaining hope’; others become addicted to the hero-worship given by their adoring patients. Then there are the charlatans and money-grabbers – and they’re not all on the fringes.

Many dying people inhabit a world of histrionic pretence. David Rieff’s memoir about the death of his mother Susan Sontag,
Swimming in a Sea of Death
(2008), is a vivid depiction of such a world. Having twice survived cancer, Sontag was diagnosed with a form of bone-marrow cancer, myelodysplastic syndrome, at the age of seventy. Rieff describes his mother’s terror of death, and the bizarre denial she maintained almost to the very end. Rieff clearly knew that his mother was dying, but could not summon the courage, or find the opportunity, to discuss this with her, and the memoir is filled with regret for this failure.

The journalist John Walsh, in his memoir of his Irish immigrant parents,
The Falling Angels
(1999), expressed outrage that his doctor father, when diagnosed with leukaemia, was told that it would be fatal. Walsh describes his parents’ disastrous decision to retire to their native west of Ireland, after half a lifetime in London. They found it difficult to settle, the new Ireland unrecognizable to them. Walsh’s father’s specialist, knowing his medical background, told him the unvarnished truth: ‘“You’re a doctor, Martin,”’ he said. “You know how these things go. Check your will, say goodbye to a few friends and accept it. That’s it, I’m afraid.”’ Not, I’m sure, the approach they would recommend in a Breaking Bad News workshop, but I think I understand what this doctor was trying to do: speaking frankly to his patient, a colleague talking to a colleague. Walsh was appalled: ‘I could never forgive the cold-hearted scumbag for saying such a thing to my poor father.’

So – there is little reward, professionally or emotionally, for doctors who tell patients the truth, but the Lie is heavily incentivized. Nearly all families, and many patients, prefer the Lie. I try to engage with the dying patient with the intention of being honest, but the path of the Lie often looks so much more inviting. And no one has ever complained to me for taking the path of the Lie. Doctors, like their patients, are human and flawed, and the easy path of the Lie is the road commonly taken.

Ivan Illich wrote scathingly of medicine’s appropriation of death, but even he believed that a doctor could help the dying man: ‘The old Mediterranean norm – that a wise person needs to acquire and treasure an
amicus mortis
, one who tells you the bitter truth and stays with you to the inexorable end – calls for revival. And I see no compelling reason why one who practises medicine could not also be a friend – even today.’

The modern acute hospital, where most of us are fated to end our days, is ill equipped to meet the needs of the dying. The culture, the ambience, the tone, is of haste, bustle, frayed tempers and a strange kind of giddiness. Big teaching hospitals have too many roles: these include dealing with the acutely ill, treating major (and minor) trauma, running out-patient clinics for the chronically ill, training medical students, doctors and nurses, carrying out clinical research, treating cancer, and so on and on. Care of the dying is not a priority. A Monday morning in such a hospital has the air of a chaotic small city. The needs of patients seem to come a poor second to those of the staff and the institution. Hierarchy, professional ‘turf’ and protocol are paramount, with different groups competing for the finite resources, such as beds, junior staff and theatre space. Such hospitals are self-perpetuating, loosely affiliated gatherings of rival professional groups.