When I was upset as a child my mother consoled me with the words "Never mind, nothing lasts for ever." Sometimes she would add sotto voce: "Except death." Death is final, but passing through nature to eternity can be heavenly or hellish. One of the most odious paradoxes of modern medicine is that the same medical practices which are enabling more of us to live longer are also responsible for condemning a significant minority of us to an unnecessarily painful death. The problem is that too many doctors are over-treating the diseases of the dying, often thereby under-treating death's most malignant symptom, pain. My mother, who died in November, was one of the unlucky ones.
Research published last September by Dr Ilora Finlay, a consultant in the new discipline of palliative medicine, illustrates the problem. She discovered that because so many medics are in thrall to morphine paranoia, one in four cancer patients are given inadequate pain relief. The consequence is that every year "34,000 patients are dying in moderate to severe pain, in some cases excruciating pain."
This was a study of terminal cancer, where the control of pain with opiates is better established than it is with other killers such as heart disease and respiratory conditions. Among the latter, the percentage who die painfully is higher than the 25 per cent in Finlay's study. My mother died from chronic obstruction of the airways, caused by emphysema; I believe the agony she experienced at the end was caused by the under-prescribing of morphine.
Morphine-or heroin-is the most powerful pain killer we have; morphine, from which heroin is refined, was named after Morpheus, the ancient Greek god of dreams. The late Jerry Garcia of the Grateful Dead rock group called it "the great comforter": the sweet dreams of morphine confer the finest "high" and, in the right dosage, can also waft us away to an easy death. If the dead could be grateful, they would surely thank us for letting them slip away on morphine: it's the champagne of deathcaps.
But morphine is a controlled drug. It is illegal except under prescription, and there are very tight controls on doctors prescribing it. Its attraction to junkies has given it a reputation as the "archetypal dangerous drug," says Professor Jeff Hanks in a recent issue of the Lancet. But he believes that physicians' fear about morphine is the result of a misunderstanding about how the devastating effects associated with abuse of morphine "could be inextricably linked with its therapeutic use."
The sinister cloud that hangs over morphine partly explains why medics "under-treat" pain; but a complementary factor is that the general public is subject to the same paranoia. A 1994 Gallup poll of 1,000 adults discovered that three quarters thought morphine was dangerous and addictive. Half of the sample said that even if it was prescribed by a doctor they would be reluctant to take it.
The final factor which complicates the humane use of morphine in pain-killing is its association with euthanasia. The Judaeo-Christian belief in the absolute sanctity of life is embedded so deep in our culture that even the secular defer to it. Many medics feel a reluctance to treat terminal pain with morphine in case it hastens death. Indeed, a few medics share the belief of Archbishop Foley, who told the euthanasia advocate Ludovic Kennedy: "Suffering in the last minutes of life helps us to share in Christ's pain and helps us to imitate Christ more closely."(Consider the End, BBC2.)
All doctors are aware of the dilemma involved in treating the pain of the terminally ill. Dr Benjamin Selvarajan, who is the GP for the nursing home where my mother died, is a typical example. Five days after she died, while talking to him about her treatment, I said that she had suffered a great deal of pain in her last two days when all I had wanted for her was to have an "easy death."
Selvarajan objected: "Well, yes. But when you say easy death, you are suggesting that I introduce morphine at an early stage, which I am not entitled to do by law. Because that is euthanasia. The government and the judges have left a very confused situation. And then who gets it? It's the doctor who does. Anyone with chronic obstructed airways at this stage will go through such a death."
I pointed out to him that in the last two days of her life, when attempts to cure her lung disease had been abandoned and all that remained was to keep her comfortable, she had been in severe pain which morphine could have stopped. He claimed that keeping her comfortable did not mean out of pain: "We could have sedated her throughout the whole business, but that would have been euthanasia... because if you keep on giving her morphine it will depress her respiratory centre." He agreed that it is not good medical practice for elderly patients to go through "bouts of extreme pain," and blamed the law. However, when I spoke the next day to a consultant in palliative medicine, I discovered that Selvarajan is as mistaken about the law as he is uninformed about current morphine research. This is not uncommon.
Dr Julia Riley is the consultant for Meadow House Hospice, at Ealing Hospital, and after I described my mother's death, she said: "Palliative medicine is growing for just the reasons you've been describing. We want to prevent what happened to your mother, but it is taking time to educate the health professionals." One reason palliative medicine is a neglected discipline is that doctors are trained to see death as an enemy with whom no truce can ever be made. Only a few people at any one time become inspired to challenge that view-when, like me, they have witnessed the painful death of a close relative.
for someone who had smoked for most of it, my mother had a long innings: 88 years. One of the touching things I discovered after her death was that about 50 years ago she had lopped 13 years off her true age and successfully carried the deception until senility obscured it even from her.
She was born Mary Violet Huggins, but always called herself Diane. Her father was a gas works labourer who, when she was 11, went to Tilbury to see his mate off to Australia, but jumped ship with him. She never saw him again. The only message she ever had from him came from an uncle who told her that her father had written saying he loved her but would never come back. She told the story with no bitterness or rancour, only a sense of wonderment at his audacity.
Her father's departure probably lay behind her unswerving devotion to her own family. She dedicated her life to bringing up her children, then two granddaughters who would otherwise have been taken into care. She always worked-canteen cook, shop assistant-not for a career, but to make ends meet. She always saved something from what she earned for the rainy days, always spent more on others than on herself, and always lent more than she ever borrowed or was repaid.
Her kindness persisted to the end. Six days before she died, I went to see her in Chelsea and Westminster Hospital where she was in a ward with a few other elderly women. One was in a condition similar to my mother, with an attendant son, Ron. Ron was very fat. He waddled along with his arms pushed out like penguin's wings, his thighs rubbing together like two sheets of sandpaper. The only thing he did more than eat was talk, incessantly, to everyone within earshot-including, when I arrived, me. I was "matey." I re-positioned my chair so that when I sat with my mother my back was towards him. But nothing fazed him. His catch phrase was "I'll 'elp anyone I will." On this particular day he cadged a couple of cartons of orange drink from the kitchen and decided to give me one. "Here you are, matey, have one of these. They're free. The nurse gave 'em to me." I had learnt that Ron had to be humoured, so I accepted the unwanted gift and tossed it disdainfully on to my mother's trolley. Ron returned to his bedside vigil.
My mother began to look uncomfortable and kept peering over my shoulder in the direction of Ron. She nodded at the carton, but I shook my head to indicate I didn't want it. She then pulled herself up and slowly pushed the orange drink behind a box of tissues, where it was hidden from Ron. She wanted to save his feelings at having his gift rejected. When I realised what she had done I was overwhelmed by her generosity of spirit, even on her deathbed.
She was to go back to the nursing home the next day. Her condition had stabilised, but I knew she was going back to die. A day earlier she had summoned up her energy to say in a hoarse whisper (her voice had gone as a result of the incessant coughing): "If I die you mustn't be too upset because I'll be glad." She had stopped eating solids because her inflamed throat made it impossible to swallow; she was doubly incontinent, had very little short term memory, was in constant oxygen debt, and had begun to develop severe pain in her legs from some recently healed ulcers. She returned to the Kensington nursing home on a Wednesday. It was the pain in her legs rather than obstructed breathing that was causing her most distress. She went on oral morphine on the Thursday evening. But when I arrived the next morning she was in pain. This was to be the pattern for the next few days: every time I visited her she was in pain; I would then remonstrate with the manager, who is a qualified nurse; he would telephone Selvarajan and gradually the dose of morphine would be increased. But Selvarajan never came to see my mother; instead, on Friday, he summoned me.
I cycled the five miles from Kensington to Selvarajan's surgery in Wandsworth. He is not a "bedside manner" doctor and had no sense of the inappropriateness of dragging me away from my mother to tell me something he could have said on the phone. All he did was confirm what had already happened in practice: that there was to be no more intervention to cure, only treatment to relieve discomfort.
My mother was in pain again when I got back. A sweet Filippina nurse, Cita, became so upset that she started to cry. I put my hand on her shoulder and said banally: "You mustn't let it upset you, it's your job." But she spoke about a doctor who lectured at her nursing school. "He always told us, 'When they are in pain at the end of their life, you give them the morphine, give them as much as they want.'"
That evening Mum pulled her legs up close to her chest, which she often did to rub at the pain; but this time she never stretched them out again and she stayed in that position until she died. She looked like a Belsen camp victim. Emaciated, her knees were now the thickest part of her leg; her sky blue eyes had faded and become opaque with the pain; every now and then she would clench her shaking fists in agony.
The next morning, Saturday, I returned. By now she could not even drink through a straw and had to be given liquid and morphine through a plastic syringe. I rushed up and down the stairs like a headless chicken, remonstrating with the manager. He, too, was clearly upset, but said that he couldn't release more morphine-it was more than his job was worth.
In her darkest hour, I held my mother while she buried her head in my chest, whimpering, clutching my thumb like a comfort rag. The only drug I had was voice. I spoke to her about her life and all that she had done. My voice kept breaking up like a badly tuned radio. I spoke about her in the past tense, as if she was already dead. I could hear myself and wondered whether I should switch tenses, but I didn't.
One anecdote made her look up and smile. It was what Jill, the mother of an ex-girlfriend of mine, had said about Mum. I told her that I'd once been talking to Jill about her, lamenting that she had done so much for others without much in return. Jill had said that my mother would receive her reward in heaven. To which I had said sarcastically: "Do you really believe there's a heaven?" Jill snapped back: "There is for people like your mother."
Around three in the afternoon, the manager of the home gave in to my pressure and called in a deputising doctor (it was Selvarajan's day off). My heart sank when I saw him; it was the same doctor who had come in one evening several months before. I remembered how he had asked my mother whether she was in pain. "Yes," she answered. He asked her where she was in pain. "Everywhere," she said. He asked her what she wanted. "I just want to die," she said. He asked why. "Then I'll be in peace," she said. At the time, I felt inordinately proud of her gravitas and her confidence with words, but I don't think he even noticed.
This time he tried to examine her and take her blood pressure; Cita intervened to say that she was too ill and he relented. He agreed to increase the morphine but refused my request to prescribe a back-up intra-muscular dose in case there was further unanticipated pain. When I pressed him he said it was against the law and lectured me on the problems of sedating the respiratory centre.
As my mother was curled up in agony beneath him he did agree to give her an extra dose of oral morphine to be administered immediately, but it did not arrive. Twice I had to go downstairs to the office to remind him; he was writing up his notes and filling in the drug charts. After about another ten minutes of unnecessary pain, Cita procured the dose and I gave it to my mother who gulped it down as I dribbled it into her mouth with the syringe. She knew that I was doing my best to kill her.
Soon after, she fell into unconsciousness and was never to wake again. Meanwhile, Selvarajan had telephoned and over-ridden the deputising doctor's refusal to provide a back-up dose that could be given intra-muscularly. Around five o'clock, I went to Boots in High Street Kensington with the prescription. The shop had only 10mg ampoules of heroin, not 15mg ones as specified on the prescription. The extra delay could have meant more agony if my mother had come out of sedation. As she stayed sedated, her next dose was given intra-muscularly.
Cita saw that I was shaking as I held the hypodermic needle. She said: "John, you know some gardeners have green fingers, well, some nurses have kind hands." She got another nurse to do it. My mother died just before ten that evening: she stirred on the pillow, looked round the room, then fell back dead. Two nurses laid her out and put a yellow chrysanthemum on the sheet. Six days later I put a bunch of chrysanthemums on her coffin and, because she always smiled, sunflowers.
palliative medicine is a relatively new branch of medicine which sprang out of the modern hospice movement, which was itself founded in 1959. Its approach with terminally ill patients is to ensure that everything possible is done to relieve their distress or pain. The movement insists it has no truck with euthanasia; in its evidence to the House of Lords select committee on medical ethics it stated: "Euthanasia has no part to play in palliative medicine."
But this is a very grey area. The movement is also explicit about the right to die painlessly-which is supported by law. It states in its evidence that a doctor's overriding duty is to relieve suffering, and it quotes Lord Devlin who says that a doctor "is entitled to do all that is proper and necessary to relieve pain and suffering, even if the measures he takes may incidentally shorten life." Riley confirmed to me that in so doing the doctor is fully protected by the law. She was equally forthright about the use of morphine. Doctors, she said, often feel themselves caught in a dilemma and, with the best of intentions, shy away from morphine. But, she added, they are wrong to do so; she referred me to Professor Jeff Hanks, who writes in one of his recent papers: "Morphine is a remarkably effective analgesic and when used correctly remarkably safe as well. Addiction, excessive sedation, and respiratory depression are often seen as inevitable consequences of morphine administration, and fear of producing these adverse effects results in widespread avoidance of the drug or under-dosing. Clinical experience has shown that these fears are unfounded."
Morphine is an unusual drug. Its analgesic strength is specific to the patient, so that a similar pain in different patients can often require widely different doses to control. Moreover, pain absorbs morphine like a sponge and, as a consequence, its side-effects-such as its depressive effects on the respiratory centre-only occur when there is more in the body than is needed to kill the pain. Thus, according to Hanks' research, giving morphine to sedate my mother or to control her pain would not have affected her respiratory system.
So in both law and medicine my mother could and should have had an easy death. When I realised this I felt that both I and the medical profession had failed her. It was not much consolation to hear Riley tell me how common my experience was. "We spend our lives trying to educate doctors," she said.
we still adhere to La Rochefoucauld's injunction that death, like the sun, is not be stared at. Death, however, is more the ending than the end; this ending is getting longer. Medical advances inexorably deliver more and more of us into an old age where infirmity, senility and fading autonomy leave us facing an undignified and, for a significant minority, painful end. Failing to do something about this exposes us to the risk of dying like my mother. Such matters should not be left to chance.
I have already indicated how many people whose deaths are anticipated die in pain, but in my talk with Selvarajan there was something he said which ought to shake the complacency of anyone who hopes it won't be him or her. I said to him that most people assume that, with a terminal patient, a request for relief from pain will be granted even if it hastens death. But he said that 90 per cent of people are treated in hospital and usually relatives do not realise what is happening. His words and tone made it quite clear that there is a lot more pain and suffering among dying patients than is conveyed to their relatives.
Yet the services of palliative medicine and the hospice movement are available on the NHS for anyone with a disease which is terminal or painful. Their care workers are trained in quickly establishing the correct analgesic treatment to control pain. Even when the patient is unconscious, they are alert to the possibility of distress.
I told Riley that when my mother was sedated she didn't look comfortable. Her laboured breathing and her agonised expression made me wonder whether she was still in pain. I said that I had raised this with Selvarajan, who told me about a patient of his who was in a coma for three weeks, twisting and groaning. But when he recovered, "he said he didn't remember a thing." He reassured me that despite her appearance my mother wasn't in pain while sedated.
Julia Riley had heard all this before. "How does he know she didn't feel pain? I find that difficult to believe. We will treat patients if we think they are uncomfortable-we will treat them even if they aren't able to tell us. And a couple of hours later they are settled and they don't grimace."
Palliative medicine, then, deals with pain even if the patient is unconscious. Once pain is controlled, the patient will not be helped to die but will be left in comfort until death comes from natural causes. This is no remedy for those who regard it as monstrous to be kept alive in such a state, even if they are not in pain, for hours, days or even weeks.
Suicide-thanks to Roy Jenkins-is legal. The problem is that most of us are likely to consider it only when we are too feeble to implement it. Thus we would need recruits to assist us, which is as illegal as euthanasia. And to look towards a change in the drug laws to ease the use of morphine is pointless, whatever the strength of the arguments.
In his book Life's Dominion, Ronald Dworkin says that for the state to prevent us dying in the way we want is "an odious form of tyranny." In the UK there is no political will to give people the right to choose how they die. While people arrange many aspects of their death-make wills, choose graves-only a few actually think about how they will die and fewer still take steps to plan it. For those who want some insurance for an easy death for either themselves or a relative, my advice is to go on the black market and lay in a stock of heroin. Selvarajan himself saw the point: "I hope that when our time comes the law will be changed to permit euthanasia." When I said that rather than rely on that, I thought it safer to buy the necessary drugs on the black market, he looked towards his own medicine cabinet, chuckled and said: "Yes, I don't blame you. I don't blame you."
