The Way We Die Now (3 page)

Some years 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.

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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.

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 personal 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.

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.

The old lady went back to the general ward, and lingered for several months. Over that time, I had many meetings with the family, along with regular correspondence from their solicitor and the hospital risk managers. The relationship between the family and the ward staff grew increasingly strained. The daughters constantly challenged the nurses and junior doctors and, on occasion, interfered with the electronic settings controlling the delivery of intravenous fluids and antibiotics to their mother. One of them took to writing instructions on the drug-chart, stating that her mother was not to be given morphine under any circumstances. As the situation deteriorated, a committee convened by the hospital’s clinical director finally decided that the patient should be made a ward of court, so that the hospital would no longer be answerable to the family. While this legal process was getting under way, the old woman’s condition suddenly deteriorated, and she died. Her death was farcical and undignified. Although I had made it clear to the family that we would not attempt cardio-pulmonary resuscitation, when the poor woman finally died, two of the daughters attempted their own cack-handed version of cardiac massage and mouth-to-mouth resuscitation.

Around the same time, a woman in her forties with liver failure, caused by alcoholic cirrhosis, was admitted under my care, and I endured a similarly bitter and unedifying conflict with her brother and sister. She eventually died after enduring a long, painful series of setbacks and complications over six months. She was not a candidate for liver transplantation, but I failed to persuade her family that this was so. A second opinion was asked for and provided, only for the patient’s sister to accuse me of unduly influencing the doctor (a liver transplant specialist) who gave this second opinion. I requested a third opinion, which concurred with both my assessment and the second opinion. Again, a great deal of correspondence passed between solicitors and hospital risk managers.

Her sister, a successful lawyer, tended to visit the ward late in the evenings and demand an update on her sister’s blood tests – the more obscure and clinically irrelevant, the more she agitated. The nurses and junior doctors were terrified of her. I met this sister on many occasions in an attempt to mollify her, but it became clear to me after several of these meetings that I was making no progress. After one bitter weekend, when this sister created mayhem on the ward, I refused to engage in any further discussions with her and dealt with her younger brother instead. The brother, unfortunately, simply passed on his elder sister’s instructions and demands. I tried to engage openly and honestly with the patient herself about the problems we were having with her sister, but she continued to defer to her elder sibling in all matters. I tried, in vain, to persuade her to see the palliative care services. She died slowly and painfully, over six months, in an atmosphere of conflict and denial.

Shortly after her death, I learned something about the complex family dynamic from her brother, who finally broke rank. My patient, who was single, had given up her job when her elderly mother became ill and could not look after herself. She cared for her mother for several years. When the old woman finally died, my patient was left alone, without a job or a purpose. Alcohol filled the void. Her difficult sister, who had married and prospered, seemingly channelled her free-floating guilt into conflict with doctors and nurses.

My elderly uncle, a much-loved priest, was sick throughout 2012. It had all started with a minor stroke. Although the stroke affected his balance, he insisted on going home before his doctor felt he was ready. A few days later, he fell in the kitchen and fractured his hip. I went to the Emergency Department that evening, and found him in great pain. The surgeons had to delay doing hip-replacement surgery because my uncle had emphysema and heart disease, and they wanted to get him as fit as possible for the procedure. He eventually had the operation, but then endured a series of setbacks, including a bowel obstruction, for which he had a second operation. He spent several months in hospital. His appetite was poor, and he tended to cough and splutter when he ate. Already frail, he lost weight. The speech and language therapists predictably recommended a PEG tube, but he wisely declined. His many parishioners were devoted to him, but the constant stream of visitors exhausted him. Often I had to ask them to leave.