The dangers of the crusade against cancer
Maggie's Cancer Caring Centres may have been set up with the best of intentions, but they give sanction to the backward notion that cancer is the wages of sin.
Maggie’s Cancer Caring Centres were founded by the architectural theorist Charles Jencks in honour of his wife Maggie who died of breast cancer in 1995 (1). The first three have opened in Edinburgh, Glasgow and Dundee and a further 10 are in various stages of planning around the UK. Designed by prestigious architects and partly funded by charity, the centres aim to provide a therapeutic environment for people with cancer and their families. Dr Michael Fitzpatrick discussed the Maggie’s Centre project with Charles Jencks in a debate on ‘Design and Healing’ sponsored by the design magazine Blueprint at the Royal Academy on 23 January 2006. This is an edited version of his speech.
A woman came to see me in the surgery a couple of years ago in some distress to discuss an abnormal smear test result. In her early forties with two young children, she had recently undergone surgery and chemotherapy for breast cancer. Now she was worried that she might develop cancer of the cervix. Her distress had been compounded by her encounter earlier the same day on the tube with a young woman wearing the pink ribbon symbol of breast cancer awareness. She told me that her immediate thought on seeing the ribbon was ‘What did I do to deserve this?’. She burst into tears, saying, between sobs: ‘I don’t smoke or drink or do drugs. I eat healthy food and I go to the gym. I’m not promiscuous. So why me?’
Here we see the dark side of the intensively promoted consciousness of issues of health and disease in contemporary society. It is not surprising that if people are constantly told that a good life is a healthy life, they are likely to interpret ill health as the wages of sin – if not the direct result of some deviant lifestyle, then at least the consequence of a lack of sufficient effort devoted to the cause of maintaining the integrity of the body. The suffering of illness is thus compounded by an additional burden of guilt and recrimination. My patient’s response to the pink ribbon indicates some of the problems arising from enhanced cancer awareness, problems that may also arise from the Maggie’s Centres project.
Who could object to the introduction of high-quality architecture and design into healthcare? Certainly nobody would object who has ever been a patient, or a visitor – or even a doctor – in the austere combination of Victorian redbrick and Sixties concrete that has dominated the British hospital landscape throughout the years of the National Health Service. Nor would anybody who has seen, as I have, the benefits, in terms of efficiency as well as of morale, of even minor innovations – such as a landscaped garden or an open-plan waiting room – object to more substantial investment of funds and expertise in improving the working environment in hospitals and surgeries.
But the Maggie’s Centres are not content merely to raise the spirits of cancer patients. Indeed, this objective comes last in the list of goals outlined by Charles Jencks in a recent article (2). For him ‘the prime motive for their existence is the belief that they can make a real difference by extending life’. This is a truly extraordinary claim – it is not one ever made by hospitals, still less by hospices, the most significant innovation in cancer care over the past half-century. Jencks does not explain why prolonging life should be of greater importance than improving the quality of life for those with a terminal illness (an issue of particular concern when this quality may be as badly impaired by the treatment for cancer as by the disease itself). Supporters of the Maggie’s Centres concept contrast its ‘patient-centred’ approach to the ‘target-obsessed’ NHS (3). Yet Jencks himself seeks to justify the centres in terms of quantifiable ‘outcomes’ and even proposes some sort of randomised controlled trial to prove the centres’ superiority over traditional hospital care.
For Jencks, the belief that the centres can prolong life is central to what he self-consciously styles the ‘Maggie’s Centres Movement’ (4). Writing of ‘the emergence of an architectural and healthcare movement’, Jencks promotes his mission with evangelical fervour, comparing the centres to churches and claiming that they are ‘spiritual’ places. Yet if we examine the Maggie’s Centres more closely we find that, like many such movements, it reveals a dogmatic and even authoritarian character. Though this movement presents itself as innovative and progressive, I am concerned that in many respects it marks a retreat, a return to anachronistic concepts of disease and a moralistic approach to healthcare.
How can a therapeutic environment make people live longer? Jencks emphasises the commitment of Maggie’s Centres to ‘transforming behaviour’, providing patients with a ‘guided way’ to improve their lifestyles. The centres offer psychological therapies, for both individuals and groups, to enable patients to learn from themselves and others how to challenge the negative impact of a diagnosis of cancer. ‘The positive feelings and complementary therapies that patients get at the centres encourage them to change their diet, to exercise and relax.’ This approach aims to foster ‘the will to live, or live better’.
Far from representing a new and enlightened approach towards cancer, Maggie’s Centres revive the nineteenth-century concept that disease can be challenged by will, a notion always closely linked to the notion that disease is itself an expression of character. The cultural critic Susan Sontag, who herself died from cancer in December 2004, observed that the view of disease as an expression of inner self appears less moralistic than that of disease as a punishment for sin. ‘But this view turns out to be just as, if not even more, moralistic and punitive’, she argued (5).
Contrasting the old myths about tuberculosis and modern myths about cancer, she noted that both proposed notions of individual responsibility. But, for her, the cancer imagery was ‘far more punishing’. Whereas TB was regarded as a disease of passion or excess, cancer is a disease of repressed emotion, associated with depression (‘melancholy minus its charms’) and stress. Whereas the tubercular character was once envied as an outlaw, a misfit, a bohemian, today’s cancer patient is a loser, with a shameful affliction, someone deserving of pity.
Sontag shrewdly observed that ‘theories that diseases are caused by mental states and can be cured by willpower are always an index of how much is not understood about the physical terrain of a disease’. When the identification of the tubercle bacillus in the 1880s deprived TB of much of its mystery, cancer – a group of diseases that is still ill-understood and for which current treatments are often ineffectual – became the focus of modern fears and of notions that both its onset and its course could be influenced by emotional factors and psychological therapies.
Three inter-related cultural themes – all evident in Maggie’s Centres – reflect the contemporary retreat into the irrational in face of potentially fatal diseases.
First, the cult of complementary medicine. One account characterises a Maggie’s Centre as ‘a form of complementary healthcare building’ and the centres provide ‘a menu’ of complementary therapies. Hostility towards traditional hospital buildings (‘brutal’, ‘factories’) is linked with a disdain for medical science, which is often casually disparaged as ‘biomedicine’, and caricatured as disengaged or ‘clinical’.
This approach fails to recognise the extraordinary achievements of biomedicine, particularly over the past 50 years, achievements often made, it might be noted, in the most architecturally uninspiring conditions. In proclaiming its commitment to a vacuous ‘holistic’ outlook, the complementary health movement abandons science in favour of metaphysics and seeks to integrate scientific medicine with alternative healing traditions, which are distinguished by their failure to satisfy any rigorous testing of their efficacy (6). When scepticism towards science coexists with credulity towards alternatives, patients with cancer and other diseases are rendered vulnerable to quacks and charlatans.
Second, there is the cult of the expert patient. One of the key themes of Maggie’s Centres is that they help patients with cancer to ‘navigate the information explosion’, through providing a library and access to the internet. The notion of the expert patient – a programme with a populist and anti-professional edge that is being actively promoted by the Blair government in Britain – has received some criticism for the way it disparages medical knowledge and expertise (7). A more important criticism is the burden it imposes on patients – at a time when they are often ill and in some distress – to take the lead in seeking out new therapies and in second-guessing their specialists about the benefits and risks of particular regimes.
Jencks offers his wife Maggie as the model patient of the new movement: ‘she was given three or four months to live, but because of her fighting spirit and our efforts, she managed to survive 27 months.’ For Jencks, ‘the decision to fight cancer is the most important a patient makes’. As Tiffany Jenkins observes in Blueprint, ‘for him, a good patient is an active patient who refuses to take a passive role in their treatment’ (4). But where does this leave somebody with cancer who does not want – or is not able – to fight or struggle, does not want to spend their remaining months or years in a wearying trawl through medical research papers or in the pursuit of diverse complementary therapies? They are unlikely to find that the Maggie’s Centre is quite the homely and friendly place that is described by its supporters. Indeed, they are likely to find its robust activism oppressive rather than supportive.
Third, there is the cult of death. Why has cancer become the focus of so much contemporary anxiety, reflected in the popularity of awareness campaigns, mass-participation fundraising events, reports of treatment breakthroughs, autobiographical accounts, stories of celebrity sufferers – and in the appeal of the Maggie’s Centres? Many more people die from heart disease, but it is less feared and much less prominent in the public imagination. Indeed, many people – the large majority – who receive a diagnosis of cancer make a full recovery after treatment and carry on with their lives. But, as the sociologist Tony Walter observes, ‘cancer is the postmodern disease’ (8).
‘It has multiple treatments, which means that middle-class patients can gather lots of different opinions, discover the side-effects of each treatment and how it impinges on their personal lifestyle, and thus choose their personal mix of treatments’, says Walter. Heart attacks and strokes may kill and maim more people, osteoarthritis and dementia may cause more disability, but they do not confer a distinct identity on their sufferers in the way that cancer does.
The early diagnosis of cancer opens the way for a ‘prolonged dying trajectory’, which becomes a period of ‘anticipatory mourning’ for the patient and the patient’s family and friends. In a radical departure from tradition, the dying person participates in their own funerary rites, hoping to generate positive and hopeful feelings from the experience of death.
Another sociologist, Clive Seale, has noted how what he characterises as ‘the revival of death awareness’ in contemporary Western society has fostered a notion of dying as ‘a new form of heroism’, one that, in our defiantly anti-heroic age, is open to everybody (9). In this scenario of death as a heroic drama, the dying person faces their inner demons and engages in an arduous quest – with appropriate therapeutic guidance – towards a ‘beatific acceptance’ of death. Through this process of realising and enacting intimate emotions, terminal illness is endowed with profound meaning – for the dying person and for those around them.
As Seale observes, some people embrace the charismatic approach towards death with ‘the enthusiasm of religious conversion’. On the other hand, some experience it as ‘a stigmatising distortion of the truth’. Commenting on the excessive zeal with which the new orthodoxy of dying and bereavement is sometimes promoted in the hospice movement, Seale describes a case in which a woman who felt the need to defend her husband against the ‘continual bombardment’ of talk about death. He warns of a danger that seems prescient in relation to the Maggie’s Centres, too, ‘that such members of the caring team exercise symbolic violence, engendering feelings of shame and rage in response to the enforced denial of accredited membership of the revivalist imagined community’.
In her later reflection on AIDS, written a decade after her first commentary on cancer, Sontag indicated that she too had adopted a mission (10). Her campaign in relation to cancer was ‘against interpretation’; her aim was ‘not to confer meaning, but to deprive something of meaning’. As she wrote, ‘nothing is more punitive than to give disease a meaning – that meaning being invariably a moralistic one’. She regarded the proliferation of metaphors and myths around cancer as having the effect of deterring patients from getting competent treatment and fostering credence in ‘thoroughly useless remedies – diets and psychotherapies’. She suggested that the way forward lay through regarding cancer ‘as if it were just a disease (and not necessarily a death sentence)’.
Sontag was hostile to the use of military metaphors in relation to disease: ‘It over-mobilises, it over-describes and it powerfully contributes to the excommunicating and stigmatising of the ill.’ Unfortunately, the Maggie’s Centres movement appears to have taken over the metaphors of fighting and struggling in relation to cancer. I commend Sontag’s advice to give these metaphors back to the warmakers. I would further suggest a division of labour between architects and doctors: let the architects design the buildings and let the doctors do the healing. My impression of the Maggie’s Centres is that the architecture is superb – but why should patients with other diseases not get quality design too?
Even more importantly, while striving to provide the best possible environment for healing and the highest standard of treatment and care, we should let our patients get on with what they have the greatest expertise in – matters of living and dying, which are beyond the reach of both our professions.
‘Design and Healing’, a special Blueprint Session with the Royal Academy and Maggie’s Centres, took place at the Royal Academy in London on 23 January 2006. Visit Blueprint’s website here.
Dr Michael Fitzpatrick is author of The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA), and MMR and Autism: What Parents Need to Know (buy this book from Amazon (UK) or Amazon (USA)).
(1) Maggies’s Cancer Caring Centres
(2) Charles Jencks, ‘The Maggie’s Centres Movement Eight Years On’, Fourth Door Review 7, p30
(3) Oliver Lowenstein, ‘Softening the blow’, Fourth Door Review 7, p26
(4) Tiffany Jenkins, ‘Buildings for Life’, Blueprint, February 2005
(5) Susan Sontag, ‘Illness as Metaphor/Aids and its Metaphors’, Penguin 1991
(6) Put alternative medicine back in its box, by Dr Michael Fitzpatrick
(7) Who wants to be an expert patient?, by Stephen Bowler
(8) Tony Walter, The Revival of Death, Routledge 1994, p41
(9) Clive Seale. ‘Constructing Death: the sociology of dying and bereavement’, Cambridge 1998
(10) Susan Sontag, ‘Illness as Metaphor/Aids and its Metaphors’, Penguin 1991
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