The Way We Die Now

by Seamus O'Mahony

  In those days, before the scandals about organ retention, many, if not most people dying in hospitals underwent a post-mortem examination. When I was a medical student, we were required to attend at least twenty post-mortems. These were surprisingly sociable events, with a large crowd of jostling students nervously and obligingly laughing at the pathologist’s jokes. The process involved in dissecting a corpse to establish the cause of death is indescribably gruesome, and I thought at the time that no family would consent to such a procedure if they could witness what actually goes on. I watched as the lungs, upper airway and tongue were removed in one piece. I saw how the skull was opened with a drill to extract the brain. I saw the bodies of dead babies and old ladies and young suicides. I had fallen behind in my attendance, and towards the end of the year there was a serious risk that I would not reach the required minimum of twenty. I was friendly with one of the pathology registrars, who would let me sit in on post-mortems at weekends, so I sometimes saw several on a single visit.

  I should add that post-mortems were not as shocking for us medical students as they might have been because we had experience of the dissection room. The first visit to this room was, I admit, disconcerting: the overpowering smell of formaldehyde, the waxy, almost unreal corpses. We learned very little of lasting value over the two years spent carrying out dissections in the anatomy department, and I felt guilty that the public-spirited volunteers had donated their bodies for so little benefit.

  During my first three years as a doctor, I was regularly part of the cardiac arrest team when I was on-call at nights and weekends. This showed me death in the raw, chiefly because cardio-pulmonary resuscitation was then (and still is) so spectacularly unsuccessful. Very often, we were ‘bagging’ with oxygen and cardiac-massaging people who were well and truly dead, the team called only to keep up appearances. It was not unknown for a nurse, having found a patient dead in their bed in the middle of the night, to call the arrest team, thus giving the impression to the relatives that she had chanced upon the patient just at the moment when they stopped breathing and had acted with the utmost diligence and initiative. Perhaps the most bizarre arrest call was to attend a patient who had jumped to his death from the top floor of the hospital, down to the concrete below. His mangled body was beyond fixing.

  I was struck on more than one occasion by the sheer terror of those few still conscious near the end. One man has stayed in my memory. It was a Saturday afternoon in Bradford Royal Infirmary, Yorkshire, sometime in the mid-1990s. I was senior registrar on call for General Medicine, and was summoned to see a man in the Coronary Care Unit. He was in his mid-fifties, admitted to the unit with a myocardial infarction (heart attack). He had severe chest pain and breathlessness. I gave him an injection of morphine, but it didn’t work, and he looked at me with a twisted rictus of fear, the physical expression of pure horror. His heart stopped beating and we failed to resuscitate him. He died, his last conscious sensations being those of pain, the struggle for breath as he drowned in his own bodily fluid, and terror. The deathbed was the usual scene of a blue and battered corpse, oozing blood from all the punctured arteries and veins, surrounded by empty syringes, blood-stained sheets, and a silent arrest team.

  Another man haunts me too: in his forties, he was admitted with a flare-up of his asthma. The arrest team (of which I was the most junior member) was called because he had suddenly become extremely short of breath. When we arrived on the ward, the man was blue and gasping for air. We didn’t know what was causing this. He was given oxygen, but did not improve, and stopped breathing completely. The most senior member of the team, the medical registrar, tried to intubate him, but instead of placing the tube in his trachea (windpipe), he placed it in the oesophagus (gullet), which resulted in a violent expulsion of vomitus. By the time the anaesthetics registrar arrived, he was beyond rescue. A post-mortem examination showed that he had a tension pneumothorax: the lung had suddenly collapsed. Not one of us had considered this as a possibility. Pneumothorax can be treated – relatively easily – by placing a drain in the chest cavity.

  But life goes on, and after a few glasses of wine at home, you move on to the next day, the next awfulness. Doctors, unlike, say, soldiers or policemen, rarely admit to being affected by the horrors they have seen, and are seemingly immune to post-traumatic stress disorder.

  THE FUTILE TUBE

  Perhaps this immunity is partly owing to the fact that, although we see it every day, doctors do not think very much about death and dying. In my case, one of the reasons this became so was a procedure called percutaneous endoscopic gastrostomy (PEG). My specialism is gastroenterology, and much of my work is performing endoscopic procedures. PEG is one such endoscopic procedure, which I first carried out in the early 1990s. It involves the placement of a feeding tube through the abdominal wall, directly into the stomach, bypassing the mouth and gullet. PEG tubes are commonly inserted in patients who cannot eat or swallow. Most of these patients are old and frail.

  This procedure was first described by two US surgeons, Jeffrey Ponsky and Michael Gauderer in 1980, and was initially used mainly in children with severe neurological disability. After doing this procedure for some time, it gradually dawned on me that in most patients PEG was futile and potentially harmful. Many people with dementia were subjected to the procedure, despite the fact that several studies had shown that it did not prolong life, improve nutrition or prevent suffering. People who had sustained a severe, incapacitating stroke, with no prospect of recovery, were kept pitifully alive by it. There were lengthy and complex legal disputes revolving around PEG feeding of individuals with persistent vegetative state in Britain and in the US, in the respective cases of Tony Bland, who suffered severe brain injury during the Hillsborough disaster in 1989, and Terri Schiavo, who was left severely brain-damaged having been resuscitated after she had a cardiac arrest at home in 1990.

  In 2002, I happened to be at the annual meeting of the American Gastroenterology Association in Atlanta. This meeting attracts up to 15,000 delegates from all over the world; the atmosphere is one of pomposity and hubris. At the end of a ‘plenary’ session on endoscopy, Jeffrey Ponsky was presented with an award, honouring his contribution to the speciality. Before the handing over of the actual award, we were treated to a short film about the great man. I learned that he was keen on horse-riding and country music, and that, way back in the 1960s, his mother-in-law had loaned him the money to buy endoscopes when he had a hunch that this would be the future. As I sat in the vast auditorium, I reflected that Jeffrey Ponsky’s co-invention of PEG was not an unalloyed boon to humanity.

  Over time, I became increasingly uncomfortable carrying out the insertion of these feeding tubes, and invested a lot of time and psychic energy in trying to dissuade families and well-meaning colleagues from authorizing the procedure. Eventually I reached the uncomfortable conclusion that, in most cases, this form of feeding was instituted mainly to meet the complex emotional, professional – even economic – needs of families and care-givers, rather than those of the patient. PEG, in many cases, was a technical panacea for existential problems.

  This fact, of course, was unacknowledged, or was actively denied. It is much easier, for example, to feed elderly confused people by PEG than by the slow, laborious, sometimes frustrating and expensive (in terms of labour costs) method of spoon-feeding. PEG feeding is a superficially attractive solution to all forms of eating difficulties in the frail, the old and the dying, but comes at a high price, with the risk of the procedure itself, along with chronic problems of aspiration pneumonia, diarrhoea, tube leakage and infection. More importantly, it turns the ordinary human activity of eating into a medical intervention, and deprives people of this simple pleasure. I actively – and successfully – resisted pressure from other doctors to insert PEG tubes into the dying. The procedure became for me a symbol of the medicalization of death, and of the failure of modern medicine to care humanely for those most in need of its help.

  Some y
ears ago, I was asked by a neurologist colleague to insert a PEG tube in a woman with advanced motor neurone disease who had swallowing difficulties. The patient herself was ambivalent about having the procedure, but her husband was aggressively insistent. He had bullied both his wife and her consultant, and hovered outside the Endoscopy Unit when she came down from the ward to have the PEG tube inserted. He insisted that his wife was not competent to make decisions about her treatment, and announced that he would not leave until the PEG tube was inserted. I proceeded reluctantly, and – to my enduring shame – carried out the procedure, even after the woman said, ‘I don’t want this.’

  One of the first tube insertions of this kind I carried out in the early 1990s was in a man with dementia. The procedure was straightforward and seemingly uncomplicated, but the following day he became suddenly unwell with severe abdominal pain and fever. He clearly had peritonitis, which usually means that an abdominal organ has been perforated. The surgeon on-call refused to operate, on the grounds that the man was so frail that an operation would kill him. He was therefore treated ‘conservatively’ with antibiotics and intravenous fluids, but died the next day. Because this man died following a medical procedure, the coroner was notified, and I was eventually called to give evidence at the inquest. A very distinguished forensic pathologist described the post-mortem findings. The end (the ‘button’) of the PEG tube was not where it should have been – in the stomach cavity – but outside the stomach, in the peritoneal cavity. When I had completed the procedure, I had checked that the ‘button’ was within the stomach, which it was. The overwhelmingly likely explanation was that this poor demented old man, in his confusion, had pulled the ‘button’ out of the stomach, but not out of the abdomen. The nurses did not notice this, and continued to feed him, with the liquid feed going directly into his peritoneum, not into the stomach. I often think about this man. Nowadays, he would never have had the procedure.

  I recently came across an old thank-you note, from the four siblings of a patient who died many years ago, when I worked in the UK, R. was a woman in her late fifties, who had been in institutional care for many years. She had multiple disabilities, including cerebral palsy, with mild intellectual disability, diabetes and recurrent chest infections. I had first encountered R. a few years before that, when she was referred to me for a PEG tube insertion. I saw her at my clinic, where she arrived with a committee of carers, including nurses, a dietician, and a speech and language therapist. The speech and language therapist had carried out a detailed assessment of R.’s swallowing and had diagnosed a ‘severe swallowing disorder’, with a high risk of choking, which in turn could lead to aspiration of food into the lungs, causing pneumonia. She recommended that R. should have a PEG tube. I explained patiently that several studies had shown that PEG tubes, far from curing this problem, actually increase the risk of aspiration pneumonia. The committee expressed its collective displeasure and left the clinic unhappy.

  Some days later, I took a call from R.’s sister. I was expecting trouble, but it turned out that she was a senior nurse and was calling to let me know that she agreed with my assessment. The family, however, were being put under intolerable pressure by the staff at R.’s care home. R. didn’t want a PEG tube herself. Her ability to swallow was indeed poor, but she enjoyed her food and the sociability of mealtimes. Her mother, to whom she had been very close, had died a couple of years before, and R.’s zest for life had diminished gradually since then. In order to mollify the nurses at R.’s care home, I admitted her to the ward for a week or so, and we found that her food intake was just about sufficient for her needs. She went back to the home without a PEG tube. Over the next couple of years, R. had several admissions with chest infection, and one of these infections eventually killed her. I relate this story because in many ways it is so atypical. Peaceful and dignified death is hard to achieve in acute-care hospitals. Some relatives do not thank me for a non-interventionist approach; one family, in a similar clinical scenario, accused me of attempted euthanasia.

  *

  Although I am primarily a gastroenterologist, I also do a lot of what is known as ‘general’ medicine. General Medicine is a British and Irish phenomenon: the concept is unknown in the US and continental Europe, where sick people generally tend to see a doctor who specializes in what ails them. When I am ‘on take’ for General Medicine, I accept everything that the super-specialists do not want. Most of these patients are frail and old, with multiple diseases. Many have dementia. I am ashamed to admit that I once viewed the care of such patients as unworthy of my attention as a highly specialized gastroenterologist. Many of these people were at the end of their lives and caring for them forced me to think about death and dying.

  The majority of my really sick in-patients are those with liver failure caused by cirrhosis, mainly attributable to alcohol. I witnessed the death, on my first Christmas Day back in Ireland after fourteen years in the UK, of a twenty-seven-year-old boy – for a boy was all he was − with alcoholic liver disease. Since then, I have witnessed many such deaths, as Ireland shot from the bottom to the top of the European alcohol consumption league table. Mortality in these patients is worse than for most cancers, and death from liver failure can be particularly gruesome. The patients tend to be mainly young (in their thirties and forties) and most do not qualify for liver transplantation.

  Some years ago, I was called on a Sunday afternoon by a surgical registrar at the hospital. I was not on-call, but he needed help with a liver cirrhosis patient, who was bleeding profusely from oesophageal varices (varicose veins in the gullet caused by cirrhosis). I drove into the hospital, taking my ten-year-old son with me, because my wife was away at the time. I left my son in my office and went to the operating theatre; I told him I would not be long. The patient, a man in his forties, was in a bad way: he was jaundiced, grotesquely swollen owing to fluid retention, and semi-comatose. We carried out an endoscopy to find (and, we hoped, to treat) the source of bleeding. As expected, the patient had oesophageal varices. We were unable to stop the bleeding, and over the next two hours struggled in vain to save him. Meanwhile, my son, locked in my office, wondered if he had been abandoned. Exhausted and bloody, I eventually collected him and drove home. On the drive back, I told him what had happened. He resolved there and then never to become a doctor.

  I have witnessed so many deaths from liver failure in relatively young people. Yet death is rarely discussed as a possibility since patients and their families tend to assume that modern medicine can fix broken organs, or that if they cannot be fixed, they can be replaced. Although cirrhosis of the liver has a worse prognosis than most cancers, patients rarely get the type of palliative care available to people with cancer. They die after long and messy hospitalizations, the medical technology pushed right to the bitter end.

  BAD NEWS

  My daily work also caused me to think about cancer care. I regularly diagnose many common cancers, such as those of the colon, oesophagus, stomach, pancreas and liver. Although my main role is diagnosis, I also carry out treatments for cancer, such as inserting stents (tubes) in patients with jaundice as a result of bile duct obstruction caused by pancreatic, and bile-duct cancers. The most challenging part of my job with cancer patients, however, is giving the bad news. This job frequently falls to me, before the patient is seen by a cancer specialist – an oncologist. I believe it is unfair to expect an oncologist to see a patient without first telling that patient what an oncologist is, and why they need to see one.

  One of the more pernicious myths of modern medicine is the notion that a doctor with ‘communication skills’ and a sympathetic manner can somehow magically transmute bad news into something palatable, that he or she can, Mary Poppins-like, give a spoonful of sugar to help the medicine go down. Medical students now attend workshops on ‘How to Give Bad News’. This notion of managing Bad News is symptomatic of the temptation to rebrand the terrors we humans inevitably face – principally death – as almost some form of perso
nal growth. Patients and relatives are said to be on a ‘journey’, and the rather speculative notions of Elisabeth Kübler-Ross on the emotional responses of dying people (the five stages of denial, anger, bargaining, depression and acceptance) are now trotted out, as if they were scientific fact. People react in all sorts of ways to their impending death, and I cannot recall a single person moving neatly through Kübler-Ross’s five stages. The power and terror of death refuses to be tamed by workshops, by trite formulae. No more than life, can death be packaged and processed into bite-sized chunks. Death is always sovereign, always in control.

  THE WHIPPING BOY

  Relatives of dying people experience complex emotions. Doctors caring for the dying increasingly find themselves in conflict with patients’ families, and over the years I have endured some bitter and unedifying battles. Many years ago, when I worked in the NHS, an elderly woman with dementia was admitted under my care. She arrived at the hospital with aspiration pneumonia, almost certainly the result of a PEG feeding tube inserted – unwisely, under pressure from the family – in another hospital. When her condition deteriorated, I tried to persuade her many children that intensive care treatment, which would involve intubation (insertion of a breathing tube) and mechanical ventilation, was not appropriate for a woman of her age with advanced dementia. Inevitably, however, she was admitted to the ICU over the following weekend, when I was not on-call, and the medical registrar came under intense pressure from the family to escalate the old lady’s care. She was transferred from the general ward to the ICU, where she was intubated and ventilated and, rather miraculously, survived. On the Monday morning, along with one of the ICU consultants, I met the family and talked with them for over an hour. Again, we tried to persuade them that Intensive Care was too interventionist for their mother. One of the daughters angrily accused us of attempting euthanasia. Another daughter announced that she would take her mother to a private hospital, where she would be treated ‘properly’. The meeting ended acrimoniously and unresolved. The ICU consultant stood his ground and told them that in the event of a further deterioration, the ICU would not admit her.