As a member of an amateur choir singing large choral works, I recently sang Elgar’s Dream of Gerontius. The poignant words by Cardinal Newman prompted me to think about what makes a good death.
…Tis this strange innermost abandonment,’ Newman
The same week as the concert, I attended the funeral of a family member. He had incurable cancer. The treatments started two years prior had stopped working. He was admitted to hospital with a high calcium and renal failure, both complications of bony spread. He was treated, and the calcium lowered temporarily, then discharged home for palliation. His son moved in to help care for him, ensuring that his father had little pain by administering oral liquid morphine using a syringe. High calcium and renal failure cause a gradual coma.
He was a Barber Shop singer and sang with his friends at home until a few days before he died. He became unconscious and died peacefully with close family at his side. During his funeral his Barber Shop choir sang uplifting songs reminding us of his life. My uncle had a good death.
‘Soul: “I hear voices that I left on earth.”’
‘Angel: “It is the voice of friends around thy bed,”’
I was reminded of a case many years ago when I was called to the ED to resuscitate an elderly man who had collapsed on a nearby beach. Despite attempted resuscitation we were unsuccessful. I was asked if I would speak to the daughter who was waiting in the relative’s room.
‘I’m really sorry,’ I said, ‘your father is dead.’
The daughter sniffed, held her face in her hands and shook her head gently. Everyone responds differently.
‘Thank you,’ she said, ‘it was a good death.’
I wasn’t expecting this.
The daughter then explained that she had spent the weekend with her father. He had insisted on coming to the beach, even though he was frail. He was watching her, while seated in a deckchair, as she swam in the sea. Halfway through her swim she looked up and he waved at her. The next time she looked up there was a small crowd gathered around, and she knew before she had left the water that he had gone. By the end of this description, we were both crying and laughing. We agreed. It was good.
Her words still cause me to reflect. What makes a good death?
‘I went to sleep; and now I am refreshed.
A strange refreshment: for I feel in me
An inexpressive lightness, and a sense
What Makes a Good Death?
As a medical doctor, I was never far from death. Just qualified, I was told that one of our main tasks was dealing with death. This was a revelation to me; I naively thought medicine was about caring for the living. I have learned, though, that caring for patients as they die is just as important.
There is a lot of uncertainty around death. We want death to be quick and painless, but at the same time, we expect doctors to be able to extend life, irrespective of the consequences. This presents a dilemma for the physician. What is the answer? I suppose this depends upon what one believes constitutes a good death. To me, it is one without pain or suffering.
As a patient, perhaps a good death would be to die while sleeping in bed, or seated comfortably, feet up, in the familiar surroundings of one’s own home. No pain. No fuss. No lingering. To slip away peacefully. A good death might be to not come round after an anesthetic. To not wake up, blissfully unaware of the last few moments.
I had a cardiac arrest during a major operation. Open cardiac massage was performed – my heart directly squeezed while my breastbone was cut open. One of the surgeons visited a few days later and said, ‘Mea Culpa.’ The operation had not gone as planned. Much later I saw the anesthetic chart and the absence of pulse and blood pressure for several minutes. I had been completely unaware at the time. If I hadn’t survived, the last thing I would have remembered was trying to count to ten as instructed, when the anesthetist only gave me time to count to three.
During the recent Covid pandemic, patients became euphoric as they became severely unwell. This led to the term the ‘happy hypoxic’, the rapid development of very low (hypo) oxygen levels was thought to be responsible. Patients were unaware of the dire nature of their illness. It was a pre-terminal event. Whilst still fully alert, patients were put to sleep to support their breathing with mechanical ventilation. Many patients didn’t survive this artificial ventilation, unable to be weaned from the ventilator. Only remembering counting to three.
In a similar manner, this phenomenon was represented at the end of Verdi’s opera La Traviata. Violetta exhibits a brief period of ecstasy at being reunited with her lover, seemingly cured, before collapsing and dying from TB. The final scene in La Traviata is based on the death of Verdi’s wife, Margherita, who died from TB. It was not clear why victims of TB showed this burst of energy, but it was also recognized among writers and poets, such as Keats. Another writer suffering from TB was George Orwell, who was described as working feverishly at his novel 1984 on the Scottish Island of Jura. Before Victor Hugo died of pneumonia, he was delirious, suddenly leaping out of bed, uttering poetry.
‘Here is the battle of day against night.
I see black light’ Hugo
This ‘peculiar flow of spirits and …uncommon quickness of genius’ was called ‘spes phthisica’ – literally high spirits, after Aretaeus, a first century Greek doctor, reported this occurrence with bleeding in the lungs. These patients believed recovery was possible, leading to frantic urges to accomplish, despite severe illness. The association with lung disease makes hypoxia the probable cause.
There are other death processes where it is common to slip into an unconscious state relatively unscathed by troublesome symptoms. A high carbon dioxide reduces consciousness and is sometimes seen in patients with chronic bronchitis.
When Death Is Not Peaceful
‘Beep-beep-beep! Beep-beep-beep!’ The arrest bleep sounded. ‘Cardiac arrest! Cardiac arrest! Emergency Department.’
We ran. An unconscious man was lying on a trolley in the brightly lit room, curtains and screens providing privacy. The nurses, performing basic resuscitation, briefed us on the patient, who had collapsed after arriving with severe chest pain. We were interrupted by the patient’s wife.
‘Go to the light, Jack! Go to the light!’ she shouted.
Usually, in this situation the relatives are directed to a quiet corner out of sight, but it was thought that being present would help them to grieve. As the most senior doctor on the cardiac arrest team, I was in charge. I tried to get the attention of the senior nurse, alarmed by this irregularity.
The resuscitation continued. One of the junior doctors, standing on a low stool, bent over the patient’s chest, started pushing down on the man’s breastbone then releasing. She had her left hand on top of her right hand; both hands were flat, and her fingers were splayed and interlaced. Her elbows were bent, and she used her body weight as there was a significant difference in size between her and the man. She counted out loud as she pushed down:
‘One-and-two-and-three-and-four-and-five-and-six-and-seven-and-eight-and-nine-and-ten.’
She paused. It was the anesthetist’s turn. He was standing at the top of the trolley, by the patient’s head, his left hand was holding onto the mask, with his little finger hooked under the patient’s chin to ensure that the mask formed an adequate seal with the patient’s face. His right hand was holding a large, inflated balloon, known as a bag. The bag and mask were connected to thin transparent tubing transporting oxygen from the tap on the wall behind him. The anesthetist pressed the bag twice and the man’s chest expanded as oxygen went into his lungs.
‘Adrenaline,’ I instructed. Adrenaline improves the heart’s blood flow and potentially the electrical activity. ‘Continue compressions.’
‘Go to the light! Don’t you wait for me!’ The woman gave clearer instructions as she moved closer to hold her husband’s hand. She was now standing beside me. This was unprecedented. We were trying our best to bring this patient back from the brink of death, while the wife was urging him past it.
‘One-and-two-and-three-and-four-and-five-and-six-and-seven-and-eight-and-nine-and-ten.’
‘Adrenaline. How many rounds is that?’ I asked, trying not to be distracted.
Sometimes, resuscitation is effective at returning electrical activity. In these cases, the heart monitor potentially reveals a shockable rhythm called ventricular fibrillation – a chaotic line resembling a child’s scribble. Paddles are then applied to the right and middle of the chest area, either side of the heart. An electric shock, or defibrillation, stops the heart and returns it to sinus rhythm. The sinus node, the heart’s internal pacemaker, sets the normal heart rate, rather than the chaotic discharge from abnormal heart muscle. The shock is like switching malfunctioning electrical equipment off and on again, to reinstate the factory settings.
Cardiac arrests are not pleasant to observe. Blood is taken from the groin to verify progress. Needles are inserted into neck veins to give drugs closer to the heart. The anesthetist inserts a tube into the trachea, during which cardiac compressions are temporarily stopped, and the patient’s oxygen levels fall momentarily.
At this stage, I would usually invite feedback from the other team members. ‘Should we call this the last round?’ A round meaning the chest compressions, breaths, shot of adrenaline, electrical activity and pulse check. We would consider the underlying cause, the likelihood of recovery of heart function and restoration of brain function, whilst resuscitation continued.
Ordinarily, if someone was deemed at risk of dying with an untreatable condition, then an end-of-life plan can be formulated, which may include a request not to perform cardiopulmonary resuscitation – a do not resuscitate order – requiring the consent of the patient to avoid this medical intervention.
The patient had suddenly, unexpectedly deteriorated, and no such discussion had taken place. There had not been time to explain to the wife what was happening during resuscitation. I don’t recall the outcome on this occasion, only how I felt. The frank debate about whether resuscitation should continue felt wrong in front of the relatives. And yet the wife seemed in favor of allowing her husband to die. She seemed to understand that recovery was unlikely at this stage.
Death from the Doctor’s Perspective
As doctors, what constitutes a good death? Doctors are performing a duty, but as death is a large part of the workload, it is an important consideration.
In the twenty-first century we can keep patients alive longer. Patients with chronic bronchitis are now offered supportive ventilation at home preventing steady deterioration into a coma with high carbon dioxide. The paramedics have been trained to consider whether the patient has chronic airways disease and avoid high-flow oxygen in these situations, which leads to an increase in carbon dioxide. Most patients with chronic renal failure are now treated with dialysis and are not permitted to slip into a uremic stupor, with gradually accumulating urea, the waste product normally excreted through the kidneys. Presenting with symptoms of chest pain on minimum exertion, unblocking the heart vessels with a cardiac balloon procedure would now be performed as an emergency due to the high risk of death. A few decades ago, patients often died while waiting for this procedure.
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After seeing a 21-year-old who died in her sleep, I saw another similar case. A woman in her thirties was dining in a hotel near a football ground, when she collapsed. Fortunately, the paramedics were on site for the match, and they quickly detected a shockable rhythm – a regular saw-tooth appearance on the heart tracing. Abnormal heart muscle was firing randomly and rapidly. An electric shock in the restaurant cardioverted her heart to sinus rhythm. She was admitted for further investigations. Direct questioning revealed that her uncle had died suddenly while relatively young. Her diagnosis was confirmed on cardiac MRI, and she had an implantable defibrillator inserted to deliver shocks when this potentially fatal rhythm struck again.
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Medical progress means that sudden death is often prevented; the death process is postponed or prolonged. Patients no longer die of fatal heart rhythms; they have a pacemaker to speed up the heart or a shock device to restart it. Patients no longer die of a massive heart attack, instead they develop insidious heart failure, with fluid on their legs and in the lungs, breathless at rest. Patients no longer die of a massive stroke, they develop vascular dementia with a loss of personality, independence, and dignity. They no longer slip into unconsciousness with chronic bronchitis or chronic renal failure. They no longer die of bacterial pneumonia; they survive with complications. They develop complex chronic diseases with symptoms, and interactions and side effects from polypharmacy.
Each treatment is often effective at dealing with the immediate problem. However, as we age predicting successful outcome is challenging, particularly with accumulating conditions, and returning to the pre-existing state of health becomes increasingly impossible. Yet, withholding potentially successful treatment is considered unethical. Hence the modern-day medical conundrum – can we ensure a good death? Are we capable of managing end of life well?
Ironically, one of the most positive places I worked in was the oncology ward. Many of these patients had terminal illness and yet, our attention to quality, not quantity of life, our skills at managing patients’ expectations and their illnesses holistically, meant that I felt I was able to perform well.
‘Pneumonia may well be called the friend of the aged…
the old man escapes the cold gradations of decay.’
‘So fatal is it in this country, at least,
that one may say that to die of pneumonia is
the natural end of the old people.’ Osler
A Good Life
We are now able to support life by unnatural means. Life is being extended, but not necessarily enhanced, by increasingly complex and often invasive treatments. We can choose to live longer. Is this a good life?
In the United Kingdom, politicians are debating the merits of assisted death; at present we cannot guarantee a painless death. Perhaps the question we should be asking is how, with our ability and judgement, can we ensure a good life until the final moment?
Personally, I would like the choice. If I had a terminal illness with less than six months to live, no hope of a cure, no quality of life, no dignity and, particularly, if I was in pain, I would want to know that I could choose to die in comfort, that I could have a good death.
‘Take me away, and in the lowest deep
For days after my operation, I saw flashes of light – forked-lightning aberrations. These gradually settled. I escaped the light! Or rather the light-receiving visual cortex in my brain, damaged by the lack of blood supply during the arrest, recovered. Young and without failing organs, I survived.
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Image credit: Photo by Claire Kelly on Unsplash
