If we over-stress the need for cancer patients to be courageous fighters, are we running the risk of denying them the chance of a peaceful end to life?
Cancer, in its many different forms, is rarely out of the news. There is, after all, a lot of it about. So most people are not very distant from a ‘case’ in their own social networks. And there are so many screening programs, information campaigns and fundraising efforts that cancer is never far away from the everyday thoughts and conversations of a large proportion of the population.
One of the interesting things about conceptions of illness in complex societies characterised by mass communication is that our thoughts and actions are not only organised in response to the experiences of people close to us ‘in real life’. They are also often influenced and guided by the emblematic stories of individual cases that we collectively connect within the media-sphere. This is not a new phenomenon. Nearly fifty years ago, British athlete Lillian Board dominated the papers and TV news, not just for winning Olympic gold but soon after for a fatal, and at the time extraordinary, public encounter with colorectal cancer. Many public cancer cases have passed through the pages and screens of the news since then. By way of football legend Bobby Moore, reality TV star Jade Goody and raconteur Steven Fry (still alive!) we arrive at Labour politician Tessa Jowell.
As ever, the cancer case of the moment embodies a story or stories ( a ‘mythos’ if you will) that carry messages for the rest of us. This may be, for example, the imperative of taking steps to ensure early detection (Goody and Fry) or the importance of courage, serenity and fortitude (Board and Moore). In the case of the moment (Jowell), the embodied messages are particularly striking, because they appear to carry within them two different and potentially incompatible strands of contemporary responses to cancer. On the one hand the need to “fight” and on the other the need to “come to terms”.
It was Susan Sontag, in her extraordinary 1978 tour-de-force ‘Illness as Metaphor‘, who famously pointed out that the dominant cultural images of a person’s relationship with their cancer “are drawn from the language of warfare” and that at a collective level “the disease itself is conceived as the enemy on which society wages war”. In Tessa Jowell’s inspirational speeches and interviews, this trope appeared repeatedly as she spoke passionately about her “100% commitment” to staying alive, her assiduous search for access to experimental treatments through research participation and her journeys to the USA and Germany to try therapies not available in the UK.
It is worth noting here that the quest to foreign lands to seek a cure is a recurrent theme in the ‘battling’ stories of mass media cancer cases. Lilian Board famously (and ultimately unsuccessfully) travelled to Switzerland to receive treatment from medical maverick Josef Issels in the mountains of Bavaria. More recently, the King family ‘abducted’ their young son/brother from an NHS hospital in Southampton where they felt he was being denied life-saving treatment and spirited him off to Spain to receive ‘ground-breaking’ proton therapy. To everyone’s delight, this actually worked and the media furore surrounding the case was effective in brow-beating the NHS into grudgingly agreeing to pay for this treatment in some cases.
Tessa Jowell’s very public cancer journey, however, also included a contrasting message. In a different side to her public statements, she stressed the need for society to develop a more compassionate, loving environment in which people dying with cancer can do so calmly and comfortably while exercising dignified choice and control. She spoke of a coming “revolution” in attitudes to palliative care and how she wanted to communicate “hope for cancer patients across the world. That the revolution we need is close at hand. Hope that we can live well together with cancer, for longer, and not just die of it.” In one of many heartfelt and moving statements of support from political colleagues, Labour MP Steve Reed added that “She is in the fight of her life. But how typical that she’s turned it into a fight to allow everyone to live well, to live better and to live longer”.
By coincidence, this incipient culture clash in the world of cancer was highlighted very shortly after the announcement of Tessa Jowell’s death by the release of a paper on Advanced Care Planning by the Macmillan organisation. This research indicates that, if we over-stress the need for a cancer patient to fight as if they are going to win, we run the risk of denying them the conceptual and emotional space required for successful peace-making as the end of their life approaches.
The Macmillan/YouGov research found that “it is a commonly held belief that describing people with cancer as ‘fighters’ or thinking of cancer as a ‘battle’ keeps people’s spirits high and instils in them a sense that they are working hard to combat the disease.” But the report goes on to suggest that it appears that this ostensibly laudable approach risks laying the foundation for a culture in which “more than one-quarter of cancer patients told us they feel guilty if they cannot stay positive about their disease.” Moreover, this vaguely toxic emotional cocktail contributes to a widespread lack of end-of-life planning leading to a situation in which “thousands of cancer patients don’t die in the place of their choosing and, in some cases, people have little or no plans in place for other care preferences.”
Maybe one of Tessa Jowell’s abiding legacies will be that, as a society, we develop a more successful accommodation between these two tendencies. Able to better reconcile an understandable desire to always ‘kick cancer’s ass’ with a possibly more humane acceptance that sometimes (quite often actually) the only sensible approach is to do all we can to make our loved-one’s last months and days as comfortable and fulfilling as possible. This will often mean not dashing off to exotic foreign treatment centres or, indeed, spending too many last precious days in waiting rooms, clinics and surgeries.