|Some docs are like this. But I've seen some other young docs over the past year who seem really impressive. They seemed to be determined to be both caring and tough. Respectful of the patient's autonomy but not giving up their position as the expert purveyor of information. And aware of their limitations at the same time.|
Medicine has become a service industry, and it's making doctors unable to confront death Published on July 29, 2017Featured in: Big Ideas & Innovation, Editor's Picks, Healthcare, The Weekend Essay Seamus O'Mahony
Consultant Gastroenterologist at Cork University Hospital
Kieran Sweeney, a doctor and writer, was diagnosed with pulmonary mesothelioma in 2009. The condition, a type of lung cancer usually caused by exposure to asbestos, is almost invariably fatal. He wrote about his diagnosis in the British Medical Journal:
The next 48 hours are spent talking to our four beautiful kids, aged mid-teens to early 20s, whose joyous careers are currently sprinkled through school, part-time jobs and university. I can’t really convey in words the catastrophic hurt my news has inflicted on them, and it is an insult, which at their age they should never have to endure. I will die of this tumour, I say, and we must address that, neither accepting nor comprehending it. This tumour will kill my body, I say, but I will yield my spirit and personhood reluctantly. We embrace. They weep. I weep for them, for fear for myself, and for the unthinkable horror that they will continue to inhabit the world in which I will play no part. 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.
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 safer surgery 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 overregulation 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.
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. 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 technojuggernaut 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.
Seamus O'Mahony is Consultant Gastroenterologist at Cork University Hospital and author of The Way We Die Now: The View from Medicine’s Front Line, from which this article is excerpted.