Pleading for her death – the moving letters of a woman in search of euthanasia

The Melbourne Age, March 25 1995

Anna Knight knew what she wanted. She had always been a strong character and when she realised just how ill she was – when she had survived three operations in only 10 weeks and emerged with a bowel full of stitches, a colostomy and the certainty that she would die from the inoperable cancer that was slowly chewing up her abdomen – she spoke to her elderly husband and to her adult daughter and she went to see Rodney Syme.

And because, by this time, she was also effectively deaf to anything other than the tinnitus rushing through her ears, she took her daughter to the meeting to write notes for her and, afterwards, she stayed in touch with Syme by writing letters – letters that trace an extraordinary relationship between a woman pleading for help with all the force of her wit and intellect and a man who was ultimately willing to give it, even if it did mean that he had to break the law.

From the first line of her first letter to him, she made her wishes very plain: “It was a huge relief to talk to someone who didn’t reject my belief in voluntary euthanasia. It isn’t just because I am in trouble that I have asked for help. It’s my firm conviction that human beings have the right to say ‘Enough’. Eventually, the law will change, but too late for many people.”

In going to Rodney Syme, Anna Knight had found a most unlikely law-breaker: a conservative man who plays the recorder for light relief; a respected urologist from the heart of Melbourne’s medical establishment whose father was a surgeon at the Royal Melbourne Hospital and whose grandfather was the founding president of the Royal Australasian College of Surgeons.

Yet, by the time that Anna Knight met him, in the spring of 1993, he had been quietly breaking the law by assisting the suicide of suffering patients for nearly 20 years.

Syme had been converted to the cause of voluntary euthanasia after a long journey out of innocence – both legal and intellectual – when, as a young doctor, he had seen medical practices which seemed at best paternalistic and at worst arrogant and cruel.

To some extent, he had been propelled on this journey by his own personality. He had always had a rebel streak. As a schoolboy, he had never fallen in with the crowd. As an adolescent, he had quickly learned to distrust flock philosophies. He had always found the idea that he should mould himself around other people’s ideas intensely irritating. But he was a respectful rebel, too successful to be an outcast, and what really compelled him towards euthanasia was the intense suffering of some of his patients.

Anna Knight was typical, though she was unusual in the calm clarity with which she expressed it in her letters to him: “The hospital experience with three operations, gastroscopy, colonoscopy, CAT scan and other X-rays and many personal examinations has shattered me. It was like being on a conveyor belt. The loss of dignity was worse than the pain. I felt helpless.

“Last night, I was kept awake for four hours with quite severe abdominal pain, and all the time, there is abdominal discomfort… I am almost totally deaf – 25% hearing in one ear, none in the other, and severe tinnitus. There are three noises that never stop. I feel very cut off from people – no telephone, radio, group meetings, theatre, films or social occasions, and only captional TV. This all sounds very self-centered. I am telling you my story, because it explains why I feel that I have had enough of life…

“I am not rushing into this because I am depressed. It has been carefully thought out. If I leave it too late, there could be a situation where I couldn’t change my colostomy bags, and my husband couldn’t do it. It’s such a repulsive job that I wouldn’t want him to, even if he was able to. I want to avoid things like that happening. It is so easy to get into a situation where you lose control of your life…

“Fear, weakness and pain can rob even a brave person of and dignity and, knowing that their family’s last memory of them will be a slowly disintegrating, dependent and probably frightened object in a bed, must often cause acute distress. Good memories can be cancelled out by a painful death.”

These kind of feelings and arguments were by now familiar to Rodney Syme and yet, at the beginning of his career, when he graduated from Melbourne University in 1959, he had heard none of them. No one had ever taught him about death nor about ethics. Certainly, no one had ever suggested that there might be times when it would be ethically correct to welcome death.

New ideas had started to ferment inside him when he went to work in England in 1963. In particular, he had been forced to think by an incident when an 85-year-old woman was brought into casualty after being knocked over by a car. She was in a terrible condition.

Syme had started to chase around, organising X-rays and blood transfusions and trying to resuscitate her, when the senior doctor had stopped him and told him not to bother. Syme understood what he meant. They could have brought the old lady back to life, but she had almost certainly suffered brain damage, and her injuries were so bad that she would never leave hospital or walk again. She had had a long life. Why would she want to recover, only to die with these horrific injuries? For the first time, Syme found himself asking whether it was always right to treat, regardless of the consequences for the patient.

The question kept on surfacing over the following years, most powerfully in the late 1960s when Syme was back in Melbourne, working at the spinal injuries unit of the Austin Hospital in Heidelberg, where he found himself dealing with young men and women who had been in the prime of their lives, at the height of their abilities, until they were effectively chopped off at the neck.

One man, in particular, branded himself into Syme’s thinking. He was in his mid-20s, totally paralysed and, despite 18 months of effort, quite unable to come to terms with his future. He tried to escape in the only way that was open to him: he attempted suicide by self-neglect. He arranged to be sent home where he pretended to have access to care, and then lay alone and still and slipped downhill.

As luck would have it, he was found before he managed to die, weak from loss of weight and with his skin inflamed by the most profound and painful bed sores. When he was rushed into the hospital, Syme could hardly believe the state he was in. He had no doubt at all what had happened: it was the clearest possible statement that the young man did not want to go on.

Yet he and the other doctors repaired him and put his skin back together and eventually, after many painful months, they sent him home where, within days – with help from some unknown hand, he succeeded in killing himself at last.

By this time, the question in Syme’s mind was not simply whether it was always right to treat but, more than that, whether doctors were always right to think that they knew best, to think that they were entitled to ignore their patients’ wishes in this way.

Now, all these years later, he found doctors were still belittling their patients’ views. Anna Knight described in one letter to Syme how she had tried to explain her wish for euthanasia to one of the doctors who had treated her in hospital.

“His reply was that euthanasia and civilisation did not go hand in hand. He said that the doctors now gave their patients a good quality of life and, at the end, a peaceful and dignified death. I wasn’t rude enough to say ‘Don’t talk such rot’, but that is what I was thinking. If I had not felt so weak and helpless, perhaps I would have had the spirit to argue…

“It’s when people are facing death that they most need a doctor’s support and guidance. To try and to fail, that is a fear that people feel. In some cases, after the patient has been through a lot of hopeless suffering, they are allowed to die, but that is not good enough. The desperation and the longing for a peaceful death that many people are forced to go through isn’t humane. It’s cruelty…

“What the doctor sees as a good quality of life can be quite different to how the patient feels. Doctors don’t see the daily miseries and the struggle with weakness that many people feel every day. Our bodies belong to us, and the law should not deprive us of the assistance of our own doctors if living becomes intolerable. We have needed their help to live and now we need their help with our dying.”

As the months passed and her illness closed in on her, Anna Knight invested all her hopes for escape in Syme. She told him that in hospital, she had thought about trying to drown herself, but she had been afraid of failing. She explained that her husband could not bring himself to help her, and she could not hear to burden her daughter by asking her. A doctor was her only hope.

Rodney Syme agreed to shoulder the responsibility, but first he urged her to live. He refused even to tell her what drugs she might eventually use, for fear that she might curtail her life in a moment of depression, and he felt a rich joy when she wrote to him two months later to say that she had decided to have chemotherapy to prolong her life so that she could care for her elderly husband.

He believed that by guaranteeing her a painless death when she needed it, he was allowing her to endure, or even to enjoy, her final months without the dark shadow of a vicious ending. It was a decision he found difficult but also deeply rewarding.

It remained a matter of profound regret for him that, as a young doctor, he had failed to help others like Anna Knight. He remembered with special sadness a 52-year-old woman from Richmond who, in 1972, had developed cancer in her kidney that resisted surgery and then spread to her spine where it tormented her nerve roots.

They had tried to ease her agony with surgery and with radio-therapy, but they had failed. Her spine had then started to collapse, leaving her partially paralysed in her legs and bladder, and still plagued by pain that pierced her like a dentist’s drill every time she tried to move. Syme had tried to help her by prescribing large doses of morphine, but it was not enough and the nurses were reluctant to give the doses for fear that they might hasten the woman’s death and be prosecuted.

Every day, Syme would visit this woman in her hospital bed. Every day, he would ask her how she felt, and she would tell him that the pain was terrible. Sometimes, she would plead with him to do something for her. But he did nothing – because, at that time, he still believed that there was nothing.

He had been terribly upset by her suffering and, after she finally died, he was bitterly angry with himself. He felt he should have simply gone to the morphine and given her as big a dose as possible. He began to feel that, in a coded way, she had been asking him to let her die, and he felt he should have understood her better.

The more time he spent as a doctor, the more he realised that doctors often failed to listen to their patients; failed to decode the signals that they sent. And, in his mind, he linked all this with his earlier thoughts about the limits of treatment and the arrogance of doctors and it began to seem to him quite simply that it was the patient’s life. The doctor’s job was not to enforce treatment but to under-stand and then to help in whatever way was best.

But even then, it never occurred to him that he was thinking about euthanasia. That crept up on him so quietly that he hardly noticed it.

Three years after the cruel death of the woman with spinal cancer, he was treating an elderly man with an inoperable, malignant tumor in his bladder. The man was in constant pain, especially when he urinated, which he had to do every 30 minutes. He also bled, which produced clots, which produced more pain and resulted in anaemia. Looking at him, Syme recalled the old medical maxim: “Dear God, please do not take me through my bladder.”

After three months of operations, he was still suffering. When Syme told him one day that he would need to come back to hospital for yet another operation, the old man was visibly distressed. “Isn’t there anything else you can do for me?” he asked. Without a doubt, Syme knew what he meant And without hesitation, he told him that there was something he could do. All the years of troubled thinking made it so obvious that at that moment, the decision was almost instinctive.

He wrote out a prescription. “I can prescribe some sleeping tablets which you can take,” he said, “and you will go to sleep.” Syme knew very well that sleep was not what the old man wanted. Later that day, at home, the man swallowed all of the prescribed tablets. He was found in a coma. Although he was taken into hospital, where doctors attempted to override his desire for death, he succeeded in dying from pneumonia five days later.

The decision had passed so quickly – the action itself had been so slight – that it never really occurred to Syme that he had broken the law by assisting a suicide. That fact only sank in during the next week when a detective phoned him to ask why he had prescribed these tablets for the old man. Syme felt his mind move into a very high gear, produced a persuasive lie, breathed a sigh of relief and realised that he had passed a milestone in his long journey out of innocence.

Since that first experience, in 1975, he had thought deeply about euthanasia. He had concluded that he had a duty to help patients, not only by assisting their suicides in some circumstances but, almost more importantly, by building relationships with them so that they could express their deepest feelings and arrive at an understanding of their real wishes. He could see this happening with Anna Knight.

“When I left the hospital,” she wrote. “I felt so afraid and desperate. It was an enormous relief for me to talk freely to you about my beliefs and fears. I left you feeling safer. Your wise counselling reassured me that it wasn’t unreasonable to think about self-deliverance but that it must never be a premature act. It must be a rational decision made when my condition became intolerable and I no longer had the will to live.”

By now, six months had passed since she had first approached him. She was struggling with chemotherapy and pressing hard for help.

“I have thought of you a lot since we met and have said a silent prayer – ‘Please don’t let Mr Syme be knocked down by a bus.’ I would feel very much safer if you agreed to give me the information now, even if I just kept it in a safe place and didn’t use it. All our lives are uncertain.”

Syme decided It would help her to have the information. He looked back on his first experience of euthanasia with some frustration. The old man had very nearly suffered the miserable indignity of surviving his suicide, simply because Syme had not given any previous thought to what medicine he should prescribe to someone who wanted to die. If he was going to do this, he thought, he really should do it efficiently. And, after the old man’s death, he became fully determined to help those patients who needed it.

He discussed his decision with almost no one – the subject was more or less taboo among doctors – but one of those with whom he did talk was a relative who was suffering with heart disease and who made it very clear that he wanted Syme to end his life if ever he got into serious trouble. It was a kind of contract between them.

The relative became increasingly ill and, during 1976, he was taken into a hospital in Melbourne where, fortuitously, Syme had patients. He took to visiting him and, on one such visit, he saw that he was on his last legs, struggling for every breath and obviously in great distress. The relative realised that Syme was by his side and reminded him of their contract. Syme knew that he was close to death but decided that it was right to hasten it. He asked the nurse for some more morphine, injected him with it and watched him become calm. Two hours later, he was dead.

Ironically, having found his way through the ethical maze and having developed an understanding of how to practise euthanasia, Syme then went through years without coming across a single patient who was in need of help. He was specialising in urology, an area where few patients were terminally ill, and he could hardly advertise his willingness to help.

However, during the 1980s, he saw euthanasia finally become a subject of public debate and as he watched religious conservatives enforce their opposition to any change in the law, he decided that the time had come to fight. He joined the Voluntary Euthanasia Society and then, in 1992, in the hope of provoking more debate, he stated publicly that he had personally helped patients to die. He gave no detail and received no attention from the police, but he was then approached by several patients who were worried about dying.

His difficulty then was that, having publicly declared his willingness to break the law, he felt unable to do so any more as he would certainly he discovered and prosecuted. He had not liked lying to the police about the tablets he had given the old man in 1975. He deeply resented being made to lie and to feel like a criminal for acting in a way that he was sure was morally right. He was tempted to obey the law and simply to speak out, but, once again, the experience of his patients compelled him to act, albeit with great caution.

Soon after speaking out in 1992, he was approached by the family of a man whose Multiple Sclerosis had rendered him blind, almost speechless and paralysed in both legs and one arm. Syme found the man’s mental and physical suffering very moving, but what really drew him to the case was the man’s treatment at the hands of other doctors.

His family explained that he had previously made a determined effort to end his life by swallowing a large quantity of heroin tablets. He had been found by a relative who was unsure what to do and he had been taken to hospital where, despite the fact that his wife made it clear that he wanted to die and that the new Medical Treatment Act was supposed to ensure his right not be treated, the doctors had chosen to resuscitate him. When he had complained to his GP and asked him to help him to die, he had refused and advised him to adapt to his situation.

By the time Rodney Syme met him, this man was losing control of his one relatively healthy arm and was aghast at the prospect of becoming completely dependent – in particular of losing the physical ability to end his life. Syme wanted to help, but he was afraid that their combined history would make it impossible to act without prosecution. He suggested that he find a new GP, but the man was housebound and weak and he told him he could not. Syme wondered whether his wife might help, but the main did not want to incriminate her. Eventually, reluctantly, Syme agreed to help him.

He said he could not write a prescription himself, but he would advise on exactly what drugs he needed and on the quantities and combination he should take. He would ensure that he was at the end of a phone on the day he appointed for his death, so that he could help if need be; and, if he was discovered in a coma, he would arrange to attend him in hospital to ensure that he would not be revived. Even this limited role, he knew, was entirely illegal and carried a sentence of up to 14 years in jail.

The man waited until his remaining arm was close to being useless and then followed Syme’s instructions. He was taken to hospital but he died peacefully.

Although Syme was sorry to have broken the law and frustrated to have been unable to do more, he was glad that he had helped him. Having now found a way to assist suicide without leaving obvious evidence, he provided the same help to an elderly widow who was dying painfully with breast cancer. And finally, the time came to give his help to Anna Knight.

By the summer of 1994, 15 months after she had first approached him, Anna Knight was desperate. Her chemotherapy had done little to arrest the disease, and she had decided to have no more of the treatment. Syme had provided her with detailed information about the drugs which she would need, and she had succeeded in persuading her GP to prescribe them for her. She wrote that she felt guilty about tricking the GP though she suspected too that the GP knew very well why she really wanted them.

As the prospect of her suicide became closer and more real, she started to bombard Syme with questions. Was it possible that she might fail and recover? Should she take more than the recommended dose? If she Iost more weight, should she take less? Might she throw up before the drugs could have their effect? How long would she take to die? And over and over again: “Will I be brave enough?”

Syme did his best to answer her questions and to ease her anxiety. In August, she wrote again to report a new crisis. She had been admitted to hospital for a fourth operation on her bowel. It had failed, leaving her in more pain than ever, and the drug which was supposed to control the pain aggravated her bowel condition, so she could not take enough to do any good.

“I feel weak. It is not easy to eat, and I am tired of this roller coaster of pain, surgery, fear of what will go wrong next.”

She was determined to hold on, to care for her husband, to spend more time with her grandchildren but, as autumn approached, she began to drift closer to death.

“Each day is full of weakness,” she wrote. “Every mouthful has to be pushed in. This isn’t living, it’s slow dying. I’m still afraid. I don’t want to do this to myself. But how I long to die – quickly… I feel very weak and shaky today and feel that I must act soon or a nursing home will get me…

“You were right when you sensed that I still feel some anxiety, but I am coping with this reasonably well. Self-doubt is the main cause. I want to go through this cancer experience, and eventually death, with courage and I want to protect my family as much as possible… I try not to look into the future, but some fear and anxiety are always there…”

She dealt with one lingering fear by writing a formal statement instructing any doctor who might find her in a coma that she did not want to be resuscitated. “Please don’t take away my chance to die peacefully,” she wrote. “I may need pain relief but don’t want anything that will save my life. I want to die.”

And then she wrote one last time to Rodney Syme: “When I think of my lonely room and my bottle of tablets, I feel fear – to die alone, with no one to hold my hand and give me courage, that is a very frightening thought.

“I don’t know today whether I will take my medication on Sunday, but how I want to. My only fear is of failure, not of dying. Regrets, of course. I think of that last look at my family’s faces. It is hard to bear that…”

At the last moment, she agreed that, despite the risk of prosecution, her husband and her daughter should stay with her and so, one day last autumn, quietly in her room in her home in Melbourne, holding hands with the two people she loved best, Anna Knight finally escaped from her illness.

Syme has continued to break the law. While his desire to avoid prosecution has ensured he has been cautious, his will to change the law has driven him towards increasingly risky provocations. At the end of last year, he wrote a detailed account of two of his experiences of euthanasia in a book published by Penguin, Willing to Listen, Waiting to Die. He expected a reaction, but he got none.

Now, he has signed the open letter to the Premier, Jeff Kennett, and disclosed to the Age the full history of his involvement. It is like baiting a bull, getting closer and closer to see how much it takes to provoke a reaction. “I believe passionately that the law is wrong and must be changed and as a matter of conscience, I have to do something,” he says. “I am obviously careful about what I say but, at the end of the day, I have to lie straight in bed at night”

Anna Knight agreed. Before she died, she told him that he could use her letters publicly after her death if he thought it would help and she explained her own hope for the future. “The present laws relating to euthanasia are not humane. They must be changed. We need some brave and compassionate politicians who will admit this and actively work towards getting the changes made. As the law stands, thousands of people are condemned to prolonged and hopeless suffering.

“Politicians have bodies too, and the day may come when they are caught in this inhumane dying trap, then they may well think ‘Why didn’t I act while I had some influence?'”

For reasons of privacy, the names and some identifying details of patients in this story have been changed.