Why Gastroenterologists Should Be More Interested in Death

I am an accidental, even reluctant, thanatologist. When The Way We Die Now1O'Mahony S. The way we die now. Head of Zeus, London2016Google Scholar was published in 2016, many people wondered how I—a gastroenterologist—came to write such a book. After all, this was territory usually occupied (and jealously guarded) by palliative care physicians. The book happened organically, almost by chance. For several years, I had been interested in the ethical aspects of percutaneous endoscopic gastrostomy (PEG) feeding. I am old enough to recall a time (the late 1980s and early 1990s) when gastroenterologists were expected (at least tacitly) to function as technicians, to carry out the instructions of their colleagues in neurology and gerontology, and not to involve themselves excessively in discussions on the appropriateness (or otherwise) of PEG insertion in individual patients. When I returned to my native city of Cork in southern Ireland in 2001, demand for PEG tube insertion was relentless, even in patients with advanced dementia. I found myself having long, sometimes difficult, conversations with families; very often, these families had unrealistic expectations, both of the prognosis of the underlying condition and of the benefits of PEG feeding. (Some referring physicians assiduously avoided such discussions.) These conversations often strayed onto existential matters, such as death, dying, and the limits of medicine. I wrote (or co-wrote) several articles exploring the difficulties faced by the gastroenterologist with PEG; I described practical strategies for improving patient selection and making difficult decisions more palatable.2O'Mahony S. Difficulties with percutaneous endoscopic gastrostomy (PEG): a practical guide for the endoscopist.Ir J Med Sci. 2013; 182: 25-28Google Scholar,3Moran C. O'Mahony S. When is feeding via a percutaneous endoscopic gastrostomy indicated?.Curr Opin Gastroenterol. 2015; 31: 137-142Google Scholar PEG became the gateway issue that quite unexpectedly sparked my broader engagement with death and dying. A gastroenterologist in Ireland has to be a jack of all trades: The role includes endoscopy (esophagogastroduodenoscopy, colonoscopy, endoscopic retrograde cholangiopancreatography, elective and emergency, diagnostic and therapeutic), general gastroenterology clinics, and inpatient work covering both acute gastroenterology (including liver disease) and what is known as "acute unselected general medical take." The only gastroenterology subspecializations in my hospital were the hepatology and inflammatory bowel disease clinics. The acute inpatient work was roughly equal parts gastroenterology and general medicine. Most gastroenterology patients had decompensated chronic liver disease, overwhelmingly alcohol related, an epidemic that gathered momentum in the United Kingdom and Ireland during the early years of the new millennium. The general medical patients were mainly frail elderly people with multiple comorbidities. (I would often describe myself as an endoscoping gerontologist.) Mortality in both groups of inpatients was relatively high; I once audited the general medical take over a 3-month winter period and found that 10% of patients died after admission. "Difficult" conversations with families and patients were an almost daily occurrence. These conversations commonly covered resuscitation, the appropriateness of admission to intensive care, recognition that dying had begun, and involvement of palliative services. The year 2012 was my annus horribilis for Difficult Conversations. From January to September of that year, I had countless such conversations of ever-escalating difficulty with the families of 2 patients. The first, admitted early in the New Year, was a woman in her 40s with decompensated alcoholic liver disease; the second, a man in his 80s with advanced dementia and recurrent aspiration pneumonia. The woman with liver disease eventually died after 6 months in hospital; she had numerous episodes of spontaneous bacterial peritonitis, hepatorenal syndrome and encephalopathy, with several spells in intensive care. The Irish National Liver Transplant Unit (we have just 1) not surprisingly agreed that transplantation was not an option. Although she was never a candidate, because of persistent sepsis, encephalopathy, and renal impairment, not to mention her failure to achieve a period of out-of-hospital abstinence from alcohol, we requested their opinion on transplantation under pressure from her family, who then refused to accept this decision. The second patient had undergone PEG tube insertion (inappropriately) in another hospital and was admitted under my care with aspiration pneumonia. He too died after many months in the hospital, having had recurring episodes of chest infection and 1 ill-advised weekend admission to intensive care. I cannot describe in any detail my interactions with the families of these patients; suffice it to say that both families refused to accept either my prognosis or any imposition of a ceiling of care, and both were hostile in their interactions with doctors and nurses. The hospital management was unable, or unwilling, to intervene; there was no institutional process—or even will—to manage such "difficult" situations. By the time both patients had died, I was exhausted, spiritually and professionally. One morning, not long after the protracted death of the second patient, I had coffee with an intensivist colleague; he too had dealt with both patients and their families. It was more an emotional debriefing session than a coffee break. We talked for some time about the difficulty of engaging with these families and then, more generally, about the ambivalent and dysfunctional attitude to death and dying in acute general hospitals. "I'm helping to organize an intensive care conference," my friend said, as we finished, "would you be willing to talk about this?" I agreed. The conference, a joint British–Irish initiative, was held a few months later in Dingle, a remote town in County Kerry on the southwestern Atlantic coast. I was the last speaker in the last session of the second and final day. Most British delegates had already left to catch a flight back to London. My audience numbered no more than a dozen people; of these few, several were hungover after the convivial conference dinner held the night before in a local restaurant. As I gave my talk to this tiny, somnolent audience, I regretted having invested so much time and effort in this lecture, when so few were there to hear it. As I drove home, it occurred to me that it was a shame to waste all that preparation on such a tiny audience: Maybe I should write a paper—a review for a journal, perhaps—based on the talk. When I began to write it, I quickly realized that I wanted a general readership for this essay and that what I had to say could not be conveyed within the narrow confines of an article: It would have to be a book. I worked in the evenings over several months. The writing came quickly and easily: I had, after all, something I urgently wanted to say. A great deal had been written about death and dying by palliative care doctors, but there was little from the messier perspective of the acute hospital, where more than half of all deaths in the United Kingdom and Ireland take place. I was both insider and outsider. My argument was that the medicalization (or, more accurately, the hospitalization) of death was not going well; that modern secular societies had lost the rituals and practices that guided previous generations through suffering, death, and grief; that a schism had developed in modern medicine, with palliative care leading 1 side and oncology the other; that conversations that should have been had were taking place too late or not at all; that modern medicine was overfocused on process and intervention at the expense of the relief of suffering; that medically assisted suicide was a distraction from other far more pressing issues. How to get published? I had been a regular contributor for some time to an online Irish literary journal, the Dublin Review of Books. I asked the co-editor of this journal if he would look at my manuscript; he agreed, and sent it on to a friend, an editor at a London publisher. He liked it, and the book was eventually published in March 2016, with the title, The Way We Die Now. It sold moderately well and was recognized with an award by the British Medical Association in 2017. Many writers look back on their work with a degree of penitence: We recall only the faults. The Way We Die Now is perhaps too polemical for such a complex subject; the section on medically assisted suicide lacks nuance; I glibly mocked the earnestness of palliative care; there is too much quotation. For all its imperfections, however, it was a book that needed to be written. In 2018, I was invited to the join the Lancet Commission on "The Value of Death" by the Commission's Chairman, Richard Smith (former editor of the BMJ), who was intrigued that a gastroenterologist had written a book about death. Over the next 4 years, I worked with a group of 25 or so people from many countries and backgrounds, including economics, philosophy, social science, and religious life. About half of us, however, were doctors, with palliative care particularly well represented. Although we gathered physically on a few occasions, the meetings were mainly virtual because of the coronavirus disease 2019 pandemic. Inevitably, some commissioners contributed more than others, and, inevitably, there was occasional conflict, but mostly we were able to achieve consensus. Our proposition was that our relationship with death and dying has become unbalanced: In high-income countries, health care is now the main context in which people encounter death, with families and communities marginalized; meanwhile, in low-income countries, many people die without access to opioids, let alone formal palliative care. We argued for a rebalancing, with more attention given to the relief of suffering and the cultural aspects of death and less to the technical and the medical. Dying, we argued, should be demedicalized, not unmedicalized, with a migration of power from institutions and professions to families and communities. The Commission's report was published in March 2022.4Sallnow L. Smith R. Ahmedzai S.H. et al.Report of the Lancet Commission on the value of death: bringing death back into life.Lancet. 2022; 399: 837-884Google Scholar We set out "five principles of a realistic utopia, a new vision of how death and dying could be":The social determinants of death, dying and grieving are tackled; dying is understood to be a relational and spiritual process rather than simply a physiological event; networks of care lead support for people dying, caring and grieving; conversations and stories about everyday death, dying and grieving become common; and death is recognised as having value (p. 838).4Sallnow L. Smith R. Ahmedzai S.H. et al.Report of the Lancet Commission on the value of death: bringing death back into life.Lancet. 2022; 399: 837-884Google Scholar I'm proud to have been a member of this Commission, but I wonder, a year-and-a-half after the appearance of our report, how influential it has been. We may have convinced the already convinced, but I doubt if large numbers of academic oncologists and biogerontologists experienced a Pauline conversion after reading it. I don't sense an appetite for the kind of sweeping societal and healthcare changes our Commission argued for; well-intentioned reports are not enough. The coronavirus disease 2019 pandemic has only reinforced the idea of health care as the custodian of death; the biomolecular project and the pharmaceutical industry have emerged from it even stronger. Early in the pandemic, the historian Yuval Noah Harari wrote an essay5Harari Y.N. Will coronavirus change our attitudes to death? Quite the opposite.https://www.theguardian.com/books/2020/apr/20/yuval-noah-harari-will-coronavirus-change-our-attitudes-to-death-quite-the-oppositeGoogle Scholar for The Guardian that posed the following question: "Will coronavirus change our attitudes to death?" He concluded, "Quite the opposite." Harari has been proven correct:The present crisis might indeed make many individuals more aware of the impermanent nature of human life and human achievements. Nevertheless, our modern civilisation as a whole will probably go in the opposite direction. Reminded of its fragility, it will react by building stronger defences. When the present crisis is over, I don't expect we will see a significant increase in the budgets of philosophy departments. But I bet we will see a massive increase in the budgets of medical schools and healthcare systems.5Harari Y.N. Will coronavirus change our attitudes to death? Quite the opposite.https://www.theguardian.com/books/2020/apr/20/yuval-noah-harari-will-coronavirus-change-our-attitudes-to-death-quite-the-oppositeGoogle Scholar "Death has been good to you," a journalist friend remarked. And so it has. Over the last few years, I have spoken about death and dying at book festivals and medical conferences. I have addressed audiences of intensivists, nephrologists, cardiac surgeons, palliative care physicians, primary care doctors, and academics in the medical humanities; I have given grand rounds at several hospitals. Curiously, I have never been invited to speak about the subject to gastroenterologists. Does my own community see me as a traitor, or worse, a crank? Or are gastroenterologists simply not interested in death and dying? I am puzzled by this seeming indifference: After all, we gastroenterologists are involved in end-of-life care on a regular basis, especially if we practice acute hepatology; we are very often the bearers of bad news; we regularly diagnose and palliate advanced cancers; in countries like Ireland, most of us still do general medicine. When I began my gastroenterology training in 1986, the culture of the discipline emphasized the technological over the pastoral; little has changed since then. In the case of patients with chronic liver disease in particular, opportunities to have the Difficult Conversation are often spurned. Such discussions then inevitably take place at a time of crisis, when the disease has decompensated, when the patient may not be able (for example, because of encephalopathy) to engage in this conversation. Complex discussions are frequently taking place at the worst possible time and in the worst possible place. A dialogue that should have taken place without time pressure in the outpatient setting, over several meetings, with the active participation of families, is conducted in the emergency department. Major decisions are forced on frightened and bewildered patients and relatives by doctors they don't know. In the report of our Lancet Commission, we argued that the word "difficult" should be dropped, that the term should be reframed as the "Essential Conversation," and that this dialogue should be the right of every patient (assuming they want to have it, as most surely do) and the duty of every doctor. This conversation might be triggered by asking the "surprise" question: Would you be surprised if this patient died in the next 6–12 months? If the answer is "no," then the essential conversation should begin. It goes without saying that this conversation is not a single event, but a process; it should explore and clarify the understanding and expectations of patients and their families; it should facilitate the preparation of an agreed plan for the inevitable decompensation, with clarity on cardiopulmonary resuscitation and escalation to intensive care. Too often, however, such plans are made out-of-hours and on the hoof. It took me 3 decades to realize that death is not a medical or technological failure, that care of dying patients is a core part of the job, not something to be delegated to other doctors. Dying—like living—is often messy and unpredictable; it stubbornly refuses to submit itself to protocols and tick-boxes, and death itself is ultimately unknowable. When caring for dying patients, the most important attribute doctors can cultivate is interest. I cannot improve on this sentence written by the great English surgeon, Wilfred Trotter (1872–1939): "To the deep unreason with which all patients approach the medicine man, his interest is more potent than knowledge and skill, the latest development in science, or the utmost virtuosity in art" (p. 100).6Trotter W. Art and science in medicine.https://wellcomecollection.org/works/znsqw543Google Scholar