Readings — From the December 2017 issue

Before I Sleep

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By Henry Marsh, from Admissions, a memoir about his life as a neurosurgeon. The book was published in October by St. Martin’s Press. Marsh is the author of Do No Harm.

I like to joke that my most precious possession, which I prize above all my tools and books, the pictures and antiques that I inherited from my family, is my suicide kit. I keep it hidden at home. It consists of a few drugs that I’ve acquired over the years, but I don’t know whether they still work  — they came with neither a use-by nor a best-before date. It would be embarrassing to wake up in intensive care after a suicide attempt, or to find myself having my stomach pumped in the emergency room. Attempted suicides are often viewed by hospital staff with scorn and condescension  — as failures in both living and dying.

I have to admit that I’m not sure I will dare to use the drugs in my suicide kit when  — and it may happen quite soon  — I am faced with the early signs of dementia, or develop an incurable illness, such as one of the malignant brain tumors with which I am so familiar from my work as a brain surgeon. When you are feeling fit and well, it is relatively easy to entertain the fantasy of dying with dignity by taking your own life, as death is still remote. If I don’t die suddenly, from a stroke or a heart attack, or from being knocked off my bicycle, I cannot predict what I will feel when I know that my life is coming to an end  — an end that might well be distressing and degrading.

As a doctor, I cannot have any illusions about death. But it wouldn’t entirely surprise me if, faced with a grave illness, I started to cling desperately to what little life I had left. Apparently, in countries where so-called doctor-assisted suicide is legal, many terminally ill people who initially expressed an interest in being able to die quickly do not take up the option as the end approaches. Perhaps all they wanted was the reassurance that if the end were to become particularly unpleasant, it could be brought to a quick conclusion. But perhaps their change of heart happens because, as death approaches, they start to hope that they might still have a future. It is a kind of cognitive dissonance: part of us knows and accepts that we are dying, but another part feels and thinks the opposite. It is as though our brains are hardwired for hope.

A good doctor will neither lie nor deprive a patient of hope, even if the hope is only of life for a few more days. But such a conversation is not easy, and it takes time, with many long silences. Busy hospital wards  — where most of us still die  — are not good places for such conversations. As we lie dying, many of us keep a little fragment of hope alive in a corner of our mind, and only near the very end do we finally turn our face to the wall.

A few months after qualifying as a doctor, I was working as an intern in a South London hospital that in the nineteenth century had been a workhouse for the poor. It had not entirely managed to lose the atmosphere of its earlier incarnation. There were long, dark corridors, and much of it was dilapidated.

I was responsible for a man who had a secondary brain tumor. It was a rare tumor that at first had developed as a solid mass, which I was able to remove. But it was malignant and recurred a few months later. It was now no longer a solid mass; instead, individual tumor cells were growing in the spinal fluid, making it thick and sticky, causing acute hydrocephalus and terrible headaches. So I operated again, inserting a drainage tube called a shunt to relieve the buildup of pressure in the man’s head. In retrospect this was a mistake, and in later years I would very rarely operate on patients with carcinomatous meningitis, as the condition is called. It is kinder to let the patient die.

The operation was not a great success. His headaches were perhaps better, but he was confused and agitated. There was no question of further treatment, and I told the family that death was inevitable, which they accepted. But the patient stubbornly refused to die  — his life was prolonged, pointlessly, by the operation. His family became increasingly distressed by the protracted agony, although the agony was really more theirs than his.

One morning, a nurse called my secretary and asked me to come up to the ward.

“The family are kicking up a terrible fuss,” she told me. “They are demanding to see you.”

So, feeling a little sick with anxiety, and deeply regretting the shunt operation, I walked quickly up the stairs from my basement office to the ward.

It was one of the old Nightingale wards  — a large, long room with tall windows and thirty beds arranged in two rows on the sides. The man was in the first bed on the left, and the curtains were drawn. I cautiously put my head between the curtains. The patient’s wife was sitting beside the bed, sobbing silently; his middle-aged son stood beside her, his face red with anger. He did not give me a chance to say anything.

“You wouldn’t treat your dog like this!” he said. “You’d put him out of his misery, wouldn’t you!”

For a moment I was quite lost for words.

“I don’t think he’s suffering much” was all I managed to say, looking at the patient, who was staring at the ceiling, mute, awake but seemingly unaware of what was going on around him. I explained that we were giving him heroin (diamorphine is the pharmacological name) through a pump, pointing to the syringe driver bolted to the drip stand near his head.

“How much longer will this go on?” his wife asked.

“I don’t really know,” I replied. “Not more than a few days . . . ”

“You told us that a few days ago,” his son said.

“All we can do is wait,” I said.

The word “euthanasia” is used to describe the various ways in which doctors can deliberately bring about the death of patients. These range from the criminal mass murder that went on in mental hospitals in Nazi Germany, to giving pain-killing morphine to people in their final agony, to the doctor-assisted suicide that is available in several countries to people faced with certain death from diseases such as terminal cancer, or, in a smaller number of countries, to people facing a life of intractable suffering from conditions such as paralysis or incurable depression.

In Britain, and in most other countries, doctor-assisted suicide is illegal, although opinion polls have shown that a great majority support changing the law. Doctors and members of Parliament seem to have more of a problem with it than the public. One senior politician told me that he was opposed to euthanasia because it would lead to targets  — presumably he feared that quotas of elderly people would be encouraged to kill themselves by medical professionals. This is an unnecessary anxiety: there are plenty of safeguards in the countries where euthanasia is permitted that prevent this happening. Furthermore, it is a matter of people making a choice, if they have mental capacity, not of licensing doctors to kill patients who lack capacity. It will not affect the ever-increasing number of people with dementia, since they no longer have mental capacity.

Doctors rarely admit, even to one another, that they have ever helped patients die  — but there can be no question that it happened in the past, and part of me hopes that it still does. You can never know, however, because no doctor wants to talk herself into prison. Besides, doctors do not want to kill patients  — indeed most of us recoil from it and often go to the other extreme: not allowing our patients to die with dignity.

Scientific advancements in medicine have achieved wonderful things, but they have also presented us with a dilemma that our ancestors never had to face. Most of us in the modern world live into old age, when cancer and dementia become increasingly common. These are usually diagnosed when we are still relatively well and of sound mind  — we can predict what will happen to us, although not the exact timing. When we no longer have much to look forward to, it is perfectly rational, on the balance of probabilities  — as the lawyers call it  — to decide to finish your life quickly and painlessly rather than run the risk of a slow and miserable decline. The problem is that we are condemned by our evolutionary history to fear death.

We have the difficult task of choosing between probabilities, not certainties. How probable is it that we will gain how many extra years of life, and what might the quality of those years be, if we submit to the pain and unpleasantness of treatment? And what is the probability that the treatment will cause severe side effects that outweigh any possible benefits? When we are young it is usually an easier decision. But when we are old and reaching the end of our likely life span? We can choose, at least in theory, but our innate optimism and love of life, our fear of death and the difficulty we have in looking at it steadily, make this choice much more difficult. We hope that we will be one of the lucky ones, one of the long-term survivors, at the good tail end of the statisticians’ normal distribution. Yet some have estimated that in the developed world, the majority of many patients’ lifetime medical costs are incurred in the last six months of their lives. This is the price of hope, hope that the laws of probability show so often to be unrealistic. And thus we end up inflicting great suffering on ourselves and unsustainable expense on society.

We do not have to undergo treatment to postpone fatal diseases in old age. And if we decide to let nature take its course, refusing treatment for fatal diseases like cancer, those of us living in countries that do not permit euthanasia will face the choice of dying miserably now, or postponing it for a few months or longer to die miserably at a later date. Not surprisingly, most of us choose the latter and undergo treatment, however unpleasant it might be.

In the last few days of my mother’s life, as she lay in her room in the house at Clapham, with its wood-paneled walls and tall, shuttered sash windows that looked out on the Common, she became doubly incontinent. “The final indignity,” she said, not without some rancor, as my sister and I cleaned her. “It really is time to go.”

I doubt that she would have wanted to bring her life to a quick end with a suitable pill if she had been given the choice. She strongly disapproved of suicide. But for myself, I see little merit or virtue in the physical indignity that so often accompanies our last few days or weeks of life, however good the hospice care that a minority of us might be lucky enough to receive.

My instinctive fear of death is a fear of dying, of being a helpless patient at the mercy of impersonal doctors and nurses working shifts in a factorylike hospital who scarcely know me. Or, even worse, of dying incontinent and demented in a nursing home.

Perhaps I am unrealistic and romantic to hope that the law in England will change  — that I might be able to die in my own bed, with my family beside me, as my mother did, but quickly and peacefully, falling asleep, rather than incontinent and gasping with the death rattle, demonstrating first the O sign, as doctors call it  — the mouth open but with the tongue not visible  — followed by the Q sign, which heralds death  — with the furred and dried tongue hanging out.

If euthanasia is legalized, this question of how we can have a good death, for those of us who want it, can be openly discussed, and we can make our own choice rather than have one imposed on us. But we prefer to avoid these questions, as I did with the man at the beginning of my surgical career. It’s as though it is better to die miserably than admit the inevitability of death.

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