'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."
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
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
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
19.01.2002: The Guardian profile by Gary Younge
13.01.2002: Robert McCrum reviews Where the Stress Falls
10.06.2000: John Sutherland reviews In America
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