The Way We Die Now (16 page)

When she was diagnosed with MDS, Sontag read everything about the condition she could lay her hands on: ‘Her apartment became a kind of research unit...’ Rieff saw this frantic search for information for what it was: ‘magical thinking disguised as practical research’. Although Sontag’s book
Illness as Metaphor
had ended with a plea to ditch the military metaphors of the struggle with disease and to ‘give such images back to the warmakers’, Rieff writes: ‘You did not give in to cancer, you fought it, and if you fought hard enough and, above all, intelligently enough, there was a chance that you could win.’ Sontag, although uninterested in sport, became obsessed with the cyclist Lance Armstrong. He, more than any famous cancer victim, had championed the concept of ‘fighting’ it.

This being America, Sontag moved on from the hapless Dr A to the infinitely more encouraging Dr Stephen Nimer at Memorial Sloan-Kettering, the famous New York cancer hospital. Nimer handled the Difficult Conversation with aplomb:

...when pressed Stephen Nimer would be very frank with my mother about just how terrible her MDS was. It is true that he never allowed himself to be drawn out on whether he personally thought my mother would survive or not (though she repeatedly tried to get him to do so, and asked me to ask him on a number of occasions as well). Instead, he would reframe the question, and in doing so, or so it seemed to me, let the hope back in... it was Nimer himself who determined this outcome. Somehow, whether it was through sheer force of personality, long experience, or psychological acuity, or some combination of all of these, Stephen Nimer managed to make the question ‘unaskable’ on some deep level.

Nimer referred Sontag to the Fred Hutchinson Cancer Research Center in Seattle, for a bone marrow transplant, despite knowing − as he must have done − that the chances of success were very slim: ‘And they were going ahead with treatment, presumably in the belief that it was not futile, and that she was not wrong to hope.’ Rieff quotes a brochure on MDS, which suggests that his mother was not suitable for this treatment: ‘In the very small proportion of patients who are under 50 years of age with a severe form of myelodysplastic syndrome, intensive radiation and/or chemotherapy followed by allogenic stem cell transplantation can be considered.’ Sontag was seventy-one, and not, by any objective criterion, a good candidate for this treatment. Nimer (as quoted by Rieff) clearly believed that it was worth trying, even if the likelihood of a cure was remote: ‘Susan told me from the outset that she wanted me to do everything she could to save her life, and so we could go straight into a discussion about
what she wanted
[my italics] and what the plan would be.’ After the publication of Rieff’s memoir, it emerged that Sontag’s medical insurance had refused to pay for the transplant, and that she had to pay a deposit of $250,000 on admission to the Seattle hospital.

When she arrived at the Fred Hutchinson Cancer Research Center, ‘its clinical research director, Fred Appelbaum, dropped by to remind my mother of the poor survival statistics... she was devastated. That evening, still completely devastated, she kept repeating, “Why would he tell me such a thing?”’ Rieff gives us the simple answer: ‘I remembered having read somewhere that the Hutch had been taken to court, accused by the relatives of some patients whose loved ones had not survived their transplants of not having warned them of how small their chances of survival had really been.’ In that single sentence, we have the double-bind of modern oncology: if the doctor does not carry out the futile treatment, he is heartless and has condemned his patient to hopelessness and death; if he does carry out the treatment, the surviving relatives will sue him for failing to be realistic with the Loved One. In fact, it’s a triple bind: if he does carry out the futile treatment, and he is realistic with the patient, she is ‘devastated’.

The transplant inevitably failed; when told, Sontag screamed: ‘But this means I’m going to die!’ She went back to New York to the relentlessly upbeat Dr Nimer. Rieff, who clearly detested Dr A (‘I prefer not to name him’), whom he describes as fat, overbearing and patronizing, positively hero-worships Nimer: ‘But for Nimer, the essence of being a doctor was doing everything possible for his patients, even if it meant trying experimental therapies where the chances of success were not high.’

Sontag’s condition steadily deteriorated, but she refused to accept that she was dying, and her son felt unable to be frank with her: ‘What conversations I had with her about her prognosis soon became almost lawyerly exercises.’ Sontag had what I would call a ‘wild’ death: ‘there was nothing easy about my mother’s death, except, literally, her last few hours. It was hard, and it was slow – sometimes the days of her dying seemed to me actually to be taking place in slow motion – and in the process it was not only my mother who was stripped of her dignity.’

Rieff felt keenly and bitterly his failure to engage with his mother and the fact of her dying: ‘I am anything but certain that I did the right thing, and in my bleaker moments, wonder if in fact I might not have made things worse for her by endlessly refilling that poisoned chalice of hope.’ I think he is hard on himself – he never had a chance. Sontag herself steadfastly refused to even contemplate her mortality. At one point, after yet another delusional talk with his mother about all the things she would do after the bone marrow transplant cured her, Rieff finally collapsed: ‘I finally broke down, I wept. But my stupefaction was almost as great as my grief. I kept thinking, “she really does not know what is happening to her. She still believes that she is going to survive.”’ After Sontag’s death, Nimer contacted Rieff by email, almost in the guise of a grieving relative: ‘I think about Susan all the time. We have to do better.’ Although Rieff finally begins to harbour some niggling doubts, nothing can shake his faith in Nimer as a ‘great doctor’, such is the force of Nimer’s personality, more ‘physician-shaman’ than ‘physician-scientist’. I wonder how Sean O’Mahony would have handled Susan Sontag.

Rieff buried his mother in Montparnasse, in Paris. In 2006, two years after Sontag’s death, her former lover, the photographer Annie Leibovitz, put on an exhibition of her work over the previous fifteen years at the Brooklyn Museum. The collection included two photographs of Sontag: one taken when she was in Seattle for her transplant, where she looks bloated and clearly very ill, the second after her death, taken in a back room of the Frank E. Campbell Funeral Chapel in New York. Rieff was appalled, and called the photographs ‘carnival images of celebrity death’.

Josephine Hart (1942–2011) began life in the distinctly unglamorous environs of Mullingar, County Westmeath. She had a traumatic childhood: by the time she was seventeen, three of her siblings were dead. She moved to London, toyed with acting, and ended up in magazine publishing. A first marriage ended in divorce, but in her second, to advertising multi-millionaire and Tory peer Maurice Saatchi, she had found her soulmate. Her first novel,
Damage
(1991) was a bestseller and was adapted into a successful film. She organized fashionable poetry readings with recitations by famous actors, produced plays, and was a prominent figure on the London literary scene. She enjoyed the lifestyle that came with her second marriage. In person, she came across as intense and a little scary.

In 2010, Hart was diagnosed with a rare type of pelvic cancer, primary peritoneal carcinoma. She died in 2011. Her husband has spoken frequently and eloquently of his grief, and has gone into semi-permanent mourning. He visits his wife’s grave every day, where he eats his breakfast and talks to her. Geoffrey Gorer would have approved. Saatchi has described her cancer treatment as ‘medieval, degrading and ineffective’. Clearly not used to being thwarted, Saatchi has declared his own war on cancer. (A previous declaration of war on cancer by Richard Nixon was not notably successful.) Saatchi proposed a private members’ Bill, the Medical Innovation Bill, in the House of Lords in 2013, with the intention of giving doctors the freedom to treat cancer patients with ‘cutting-edge’ and ‘revolutionary’ treatments, without the fear of litigation. Clearly, Saatchi has been motivated by witnessing the horrors of his wife’s illness and death, but I detect also a whiff of pique: before his wife’s cancer, I imagine that he solved most problems with his money and influence. Cancer, however, was unimpressed by Maurice Saatchi. He was interviewed in 2013 by Elizabeth Grice of the
Daily Telegraph
:

In desperation, Saatchi trawled the Internet for news of hopeful discoveries. The future of cancer science seemed to lie in mapping the cancer genome and providing less toxic therapies. ‘Why couldn’t Josephine Hart have the future of science?’ He approached Harvard Medical School with details of her case. They analysed his wife’s tumour and sent back a thick report with a covering letter that said: ‘The good news is that your wife’s tumour is non-mutational.’ Her own doctors were unimpressed. ‘Isn’t this genetic profiling very important?’ Saatchi asked. He was told: ‘It’s irrelevant.’ That was the tipping point; the moment he knew he would eventually have to challenge the adherence to standard practice.

The man who once ran the biggest advertising agency in the world, who is credited with helping bring Margaret Thatcher to power in 1979, made his intentions clear: ‘I intend to cure cancer, you see. I mean to do it. I expect to do it.’ Saatchi was not previously very exercised about cancer: Silk Cut (a brand of cigarette) was one of Saatchi & Saatchi’s biggest accounts.

It is not clear to me how this change in legislation would ‘cure’ cancer. Although Saatchi’s PR campaign was slick and influential, informed opinion, including the Royal Colleges (Physicians, Surgeons and General Practitioners) and the British Medical Association, saw no need for such legislation. More than one hundred oncologists wrote to
The Times
opposing the Medical Innovation Bill: ‘We are concerned that rather than promoting responsible scientific innovation in the treatment of cancer, the Medical Innovation Bill will actually encourage irresponsible experimentation producing nothing more than anecdotal “evidence”, at the potential expense of causing serious harm and suffering to patients.’ Saatchi was furious, and raged in the
Guardian
: ‘The 100 doctors who wrote to
The Times
rubbishing my medical innovation bill are the authentic voice of complacency... How I pity their patients.’ In January 2015, the influential cancer journal
The Lancet Oncology
devoted an editorial to the Bill. In it, Saatchi’s personal credentials (‘an unelected individual with no professional medical or scientific training’) were loftily dismissed, and the authors went on to explain that doctors are already able to innovate outside clinical trials: ‘There are many ways in which doctors can access drugs that are in early-stage clinical trials but not yet widely available. However, provision of these agents on a desperate whim, in an unmonitored environment, could lead to patient harm.’ The Bill, concluded the editorial, ‘strikes at the heart of evidence-based medicine’.

Although Saatchi threw his considerable PR talents and financial resources into drumming up support for his Bill, it was doomed. One of the last decisions taken by Norman Lamb, junior Health Minister in the Conservative/Liberal Democrat coalition government, was to veto it in the House of Commons.

The story of the Medical Innovation Bill is an interesting one. Many people bereaved by cancer feel an understandable desire to find some meaning in their loss. Maurice Saatchi’s wish to honour the memory of his wife is admirable, and this desire for something good to emerge from a cancer death is a common emotion among the bereaved. Relatives often set up voluntary groups to fundraise for research, or to provide new facilities. Few such relatives, however, have Maurice Saatchi’s influence and wealth. His
idée fixe
was indulged by many journalists and politicians, a troubling reflection of a woeful ignorance of science. The main beneficiaries of such legislation would have been quacks and the pharmaceutical industry. The notion that we are all scientific experts is a threat to freedom: if we are not careful, the rich and media-savvy will become our law-makers. Maurice Saatchi’s grief is, in its own way, noble, but his grief will not cure cancer.

The late Nuala O’Faolain (1940–2008) sparked a national debate in Ireland about death and dying in April 2008, when she was interviewed on radio by her old friend, the broadcaster Marian Finucane. I confess I was never a fan of O’Faolain’s. Her upbringing in Dublin was spectacularly dysfunctional. Having worked as a journalist and television producer for many years, she wrote, in her fifties, a bestselling memoir
Are You Somebody?
(1996). She left her long-time lover, the journalist and feminist Nell McCafferty, and moved to New York, where she began a relationship with a lawyer, John Low-Beer.

In February 2008 she noticed a weakness in her arm and went to the emergency room of her local hospital in New York. After a series of scans, she was told that she had tumours in her brain, lung and liver, with the likely primary being in her lung. O’Faolain had been a heavy smoker, but had quit ten years before. She declined chemotherapy, but agreed to some palliative radiation treatment for the brain tumours. She returned to Ireland to die. The interview was a national sensation: the Irish, so good with the dead, are not so good around the dying.

O’Faolain was stark and brutally honest; she made no attempt to put a positive spin on her situation. It seemed that the country stopped whatever it was doing to listen. The Irish were not used to such candour about the subject of death. Here was a situation that could not be mollified or shrugged away. You won’t, in the stock Irish phrase, be ‘grand’; there is no hope:

I was just reading about some best-selling man who says ‘Live your dream to the end’ and so on and I don’t despise anyone who does, but I don’t see it that way. Even if I gained time through the chemotherapy, it isn’t time I want. Because as soon as I knew I was going to die soon, the goodness went out of life... I’m not nice or anything – I’m not getting nicer. I’m sour and difficult, you know. I don’t know how my friends and family are putting up with me, but they are, heroically...