'I'm not interested in quality of life'
Writer Susan Sontag had already had cancer twice when she was diagnosed with a particularly lethal kind at the age of 71. So, recalls her son David Rieff, she did what she'd always done - fight
Wednesday December 7, 2005
The Guardian Susan Sontag. Photo: AP

My mother lived almost her entire 71 years believing she was a person who would beat the odds. Even during the last nine months of her life, once she had been diagnosed with myelodysplastic syndrome or MDS, a particularly virulent blood cancer, she continued to persevere in the belief that she would be the exception. MDS is technically a precursor to acute myeloid leukaemia. On average, its survival rates are no better than 20%, and far worse in a woman in her early 70s who has had cancer twice before. In the immediate aftermath of her diagnosis, she went online to learn all she could about MDS, and despaired as the nature of its particular lethality sank in. But that despair was almost the flip side of a lifelong confidence in her ability to defy the odds. "This time, for the first time," she told me, "I don't feel special."
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Remarkably, in only a few weeks she had righted herself psychologically and was gearing herself up, just as she had done twice before, to find the doctors and treatments that seemed to offer her some hope of defying those terrifyingly long odds, and once more becoming the exception. How she did this, I don't know. What I do know is that the panic attacks that had overwhelmed her at the beginning began to lessen, and in the MDS literature she found on the web she began to find reasons for hope rather than despair. She even began to work again, writing a fiery piece on the Abu Ghraib torture photographs, at the same time as preparing herself for the bone-marrow transplant that was her only realistic hope of a cure.
On her 70th birthday, before she found out she was ill again, she had talked to me with characteristic passion about how she was only now starting what was a new and, she thought, best phase of her writing life. Now, once more, she began to speak of new projects she would undertake - above all, the novel she had been outlining.
Was it bravado? Doubtless it was, but not bravado alone. During the two years of chemotherapy that she underwent in the mid-70s to treat her first cancer - stage-four breast cancer that had spread into 17 of her lymph nodes - she had managed to write a book on photography, and, two years later, her book, Illness As Metaphor. That time, she had beaten the odds. William Cahan, her doctor at the Memorial Sloan-Kettering Cancer Center in New York, told me at the time that he saw virtually no hope. But, as her friend, Dr Jerome Groopman, the chief of experimental medicine at the Beth Israel Deaconess Medical Center in Boston, told me a few months after her death, "the statistics only get you so far. There are always people at the tail of the curve. They survive, miraculously, like your mother. Her prognosis was horrific. She said, 'No, I'm too young and stubborn, I want to go for [treatment].' Statistically, she should have died. But she didn't."
My mother was no more reconciled to extinction at 71 than she had been at 42. After her death, one common thread in many of the extremely generous and heartfelt letters of condolence I received from her friends puzzled me: it was surprise - surprise that my mother hadn't beaten the MDS as she had beaten both breast cancer and the uterine sarcoma that had stricken her in her mid-60s. But then she, too, was surprised when the doctors came in to tell her the bone-marrow transplant had failed and her leukaemia was back. She had screamed out: "But this means I'm going to die!"
I will never forget that scream, or think of it without wanting to cry out myself. And yet, even that terrible morning in that pristine room at the University of Washington hospital with its incongruously beautiful view of Lake Union and Mt Rainier in the background, I remember being surprised by her surprise. I suppose I shouldn't have been. There are those who can reconcile themselves to death and those who can't. Increasingly, I've come to think that it is one of the most important ways the world divides up. For doctors, though, understanding and figuring out how to respond to a patient's perspective can be almost as grave a responsibility as the scientific challenge of treating disease.
"There are those who say, 'You know, I'm 70 years old; if I get another four or five months, that would be fine'. Others say, 'You do everything you can to save my life'," said Stephen Nimer, one of America's foremost researchers on the fundamental biology of leukaemia and wh head of the department of haematologic oncology at the Memorial Sloan-Kettering Cancer Centre. "Then it's easy. You can go straight into a discussion of what a patient wants."
For Nimer, the ethical challenge comes not with the 30% who know what course they want to pursue, but the "undecided" 70%. As Nimer told me somewhat ruefully, the doctor's power to influence these patients, one way or the other, is virtually complete. "There are ways to say things," he said. "'This is your only hope.' Or you could say: 'Some doctors will say it's your only hope, but it has a 20 times better chance of harming you than helping you.'"
Groopman's approach with patients like my mother, patients for whom, statistically, the prognosis is terrible, is to begin by saying, "This is the likely scenario. There is a very small chance, but it comes with tremendous cost." The doctor's job is then to try to determine a treatment plan responsive to the patient's wishes but not what physicians refer to as being "medically futile" - that is, offering no real chance for cure or remission. That is hard enough. What makes the doctor's dilemma in such situations even more acute is that "medically futile" means different things to different physicians. After my mother's transplant failed, Nimer tried one last treatment - an experimental drug called Zarnestra that had induced remission in some 10% of the small number of patients to whom it had been administered. I would learn from the nurses' aides who attended my mother in the last weeks of her life that some of the doctors and nurses on the transplant floor were uncomfortable with the decision, precisely because they saw my mother's situation as medically futile.
My mother was determined to try to live no matter how terrible her suffering. Her choices had been stark from the outset. Unlike some other cancers where the disease can be halted temporarily through treatment, there are no remissions in MDS. Her only chance of survival lay in the possibility of an outright cure offered by an adult blood stem-cell transplant. Otherwise, to quote one of the medical websites my mother visited repeatedly, treatment offered only an "alleviation of symptoms, reduction in transfusion requirements, and improvement of quality of life". In fact, during their second meeting, Nimer had offered the option of treatment with a drug called 5-azacitidine that gave many MDS patients some months during which they felt relatively well. But the drug did little to prolong life. My mother replied with tremendous passion: "I am not interested in quality of life!"
My mother could express herself only with the greatest of difficulty in the last weeks of her life. Like most people who have lost someone dear to them, I would say one of my dominant emotions since my mother's death has been guilt - guilt over what I did and failed to do. But I do not regret trying to get her to swallow those Zarnestra pills even when her death was near, for I haven't the slightest doubt that, had she been able to make her wishes known, my mother would have said she wanted to fight for her life to the very end.
But this does nothing to change the fact that it seems almost impossible to develop a satisfactory definition of what is and is not medically futile. What is the cut-off? A 10% chance of success? 5%? 1%? When does the "very small chance" my mother's doctors bought at a "tremendous cost" in suffering become so infinitesimal as to be no longer worth trying?
Once my mother and Nimer had agreed that she would have a bone-marrow transplant at the Fred Hutchinson Cancer Centre in Seattle, she applied to Medicare - her primary insurance - for coverage of the treatment. Medicare refused, saying coverage could only begin once her MDS had "converted" to full-blown leukaemia. My mother then applied to her private insurance company. The response was that her coverage did not extend to organ transplants, which was what they considered a bone-marrow transplant to be. Later, they relented, but still refused to allow my mother to go to the Fred Hutchinson Cancer Centre, even though Nimer was convinced the doctors there stood the best chance of saving her life.
My mother persevered. She was admitted to the Fred Hutchinson Cancer Center as a so-called self-pay patient and had to put down a deposit of $250,000. Even before that, she had had to pay $45,000 for the search for a compatible bone-marrow donor. The fact that she was getting the best treatment available was a tremendous consolation for my mother. It strengthened her will to fight, her will to live. But, of course, she was only getting that treatment because she had the money to pay for it.
How or whether the realities of the health care system in America today can be reconciled with the fundamental aspiration of science, which is discovery, and the fundamental aspiration of medicine, which is to cure disease, is above my pay grade. But if the time I have spent in the company of oncologists and researchers convinces me of anything, it is that these aspirations are almost as fundamental to doctors as the will to live is in cancer patients. The possibility of discovery, of research, is like a magnet. And researchers can find inspiration in the example of Aids research, an almost paradigmatic example of heroic, cost-indifferent medicine. But if there is a difference between Aids research and cancer, it is that while advances in Aids came relatively quickly, advances in cancer treatment, and, indeed, in the fundamental understanding of how cancer works, have come far more slowly than many expected. Periodically since 1971, when President Nixon predicted a cure for cancer would be found in five years, the sense that the corner is about to be turned takes hold. We are in such a moment today. America's National Cancer Institute has recently put forward ambitious benchmarks for progress in cancer research and treatment. As its former director, Dr Andrew von Eschenbach, put it to me, "The caterpillar is about to turn into a butterfly. I have never known more enthusiasm among cancer researchers. It's a pivotal moment." The suffering of cancer, he argued, would be well on its way to being alleviated by 2015.
Largely speaking, the media has echoed this optimism. It is not unusual to read about the latest "breakthrough" in cancer treatment. On the level of research, there is no doubt that profound progress has been made. Harold Varmus, the Nobel laureate who now heads Memorial Sloan-Kettering, was emphatic on the subject. "Fifty years ago," he told me, "we didn't know what genes were. Thirty years ago we didn't know what cancer genes were. Twenty years ago we didn't know what human cancer genes were. Ten years ago we barely had any drugs to inhibit any of these guys. It seems to me we've made an awful lot of progress in one person's lifetime."
But a number of research scientists doing basic research seemed far more pessimistic. Lee Hartwell, also a Nobel laureate who is now president of the Fred Hutchinson Cancer Center, has urged that the focus in cancer treatment shift from drug development to the new disciplines of genomic and, above all, proteomics. Though he acknowledged the profound advances in knowledge made over the past two decades, Hartwell seemed most concerned with "how well are we applying our knowledge to the problem. There have been advances: we cure most childhood leukaemias with chemotherapy, for one thing. But the progress has been surprisingly weak given the huge expenditures that we've made [since the 1970s]. We're spending more than $25bn a year improving cancer outcomes, if you include the spending of the pharmaceutical companies. So you've got to ask yourself whether this is the right approach?"
For Hartwell, the focus needs to be on "diagnostics rather than therapeutics. If you catch a cancer at stage 1 or 2," he said, "almost everybody lives. If you catch it at stage 3 or 4, almost everybody dies. We're just not spending enough of our resources working to find markers for early detection."
Some researchers are even more sceptical. Mark Greene, John Eckman Professor of Medical Science at the University of Pennsylvania and the scientist whose lab did much of the fundamental work on Herceptin, the first important new type of drug specifically designed to target genetic abnormalities on cancer cells and, in effect, cause them to self-destruct, agrees with Hartwell. The best way to deal with cancer, he told me, is to "treat early, because basic understanding of advanced cancer is almost non-existent, [and] people with advanced cancer do little better now than they did 20 years ago."
If she had imagined herself special, my mother's last illness cruelly exposed the frailty of that conceit. It was merciless in the toll of pain and fear it exacted. My mother, who feared extinction above all else, was in anguish over its imminence. Shortly before she died, she turned to one of the nurses' aides - a superb woman who cared for her like her own daughter - and said, "I'm going to die," and then began to weep.
And yet, if her illness was merciless, her death was merciful. About 48 hours before the end, she began to fail, complaining of generalised low-grade pain (a sign that the leukaemia was in her bloodstream). Shortly after, she came down with an infection. The doctors said there was little chance her body could stave it off. She remained intermittently lucid for about another day, though she could barely speak and she was confused. I feel she knew I was there, but I am not at all sure. She said she was dying. She asked if she was crazy.
By Monday afternoon, she had left us, though she was still alive. Pre-terminal, the doctors call it. But she had gone to a place deep within herself, to some last redoubt of her being, at least as I imagine it. I and the others who were at her side left around 11pm and went home to get a few hours' sleep. At 3.30am on Tuesday, a nurse called. My mother was failing. When we arrived in her room, we found her hooked up to an oxygen machine. Her blood pressure had already dropped into a perilous zone and was dropping steadily, her pulse was weakening, and the oxygen in her blood was growing thinner.
For an hour and a half, my mother seemed to hold her own. Then, she began the last step. At 6am, I called Nimer, who came over immediately. He stayed with her throughout her death.
And her death was easy, as deaths go, in the sense that she was in little pain and little visible anguish. She simply went. First, she took a deep breath; there was a pause of 40 seconds, such an agonising, open-ended time if you are watching a human being end; then another deep breath. This went on for no more than a few minutes. Then the pause became permanence, and Nimer said: "She's gone."
A few days after my mother died, Nimer sent me an email. "I think about Susan all the time," he wrote. And then he added: "We have to do better."
· Susan Sontag died on December 28 2004

Lucasta Miller on Susan Sontag
Ed Vulliamy remembers Susan Sontag
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