Anatole Broyard’s essay collection, 'Intoxicated By My illness', is a rare treasure among pathographies - witty, irreverent, unsettling (1). Broyard exalted, teased and cajoled dying people to dig deep into their imaginative reserves and to invent their own idiosyncratic 'style' when facing death.
Broyard spoke ill of illness, having little patience for sentimentality or heroism. Alongside his forthright analysis of the routine trauma inflicted upon patients in the relentless examinations and tests on the most intimate parts of their bodies, Broyard charted the seething resentment, fear and heady desires that can circulate among dying people. As Oliver Sacks observes, in the Foreword to Intoxicated, 'Illness clearly did not deprive Broyard of his curiosity or force - it sharpened it, focused it, as never before' (p.xii).
Not for Broyard, military metaphors of soldiering on or battling against disease. The literary critic and essayist imagined his advancing prostate cancer as a love affair with someone demanding things he’d never done before, or a little uncomfortably close for some of us, as ‘a lecture I was about to give to an immense audience on a subject that had not been specified’ (p.21). In its bold expansiveness, Intoxicated manages to reclaim something of dying from medicine. In the process, it questions our recourse to biochemical solutions to existential predicaments. But Broyard was not letting medicine off the moral hook that easily. I imagine he was an extraordinarily engaging and emotionally demanding patient. Not content with medicine's retreat into the abstractions of anatomical concerns, Broyard longed for a doctor who could attend to him body and soul; someone with whom he could share his 'true feelings' (2), 'not only a talented physician, but a bit of a metaphysician, too.'
Intoxicated By My Illness has been on my mind recently, with the growing heat from debates surrounding Lord Falconer’s Assisted Dying Bill. The bill now includes an amendment allowing a judge to establish that someone with less than six months to live has made “a voluntary, clear, settled and informed” decision to end their life. The bill is due to receive clause-by-clause scrutiny, for the second time in the House of Lords, on the 16th January.
Conversations about end of life decisions are important, especially in our ageing society. What makes me uneasy is how the debates seem to be dominated by certain powerful and privileged voices and positions can become polarised. You either support assisted dying or you don’t. There seems to be little room to acknowledge ambivalence, doubt or even the pressures of a broader cultural palette of ideas of what might be a good death.
In my research with dying migrants in England, I have come across very different approaches to pain, illness and death. Some people reject all medical palliation and appear to embrace pain as an experience that can be affirming of their relationship with god. Others, can choose to die consciously without being sedated, not only because of religious belief, but sometimes also out of a Broyardian sense of wanting to adventure into this last unknown.
And sometimes there can be a change of perspective as individuals move closer to death. After a decade of hectoring her children to help her die, when her last stages of life became imminent following a stroke, the author Michelle Henson’s mother changed her mind. A wise rabbi was able to recognise her conflicted and overlapping feelings. Henson’s worry is that social attitudes to illness and dependency, especially for older people, are influencing last wishes and that we can be too quick to seek out clinical options, “life and death is now rather like shopping” Henson writes, “consumer sovereignty gone mad” (3).
The range of views on assisted dying, for doctors too, are often glossed over or misrepresented. The geriatrician, writer and poet, Raymond Tallis, feels that assisted dying discussions have been ‘captured’ by a relatively small, but powerful group of clinicians. Tallis believes that despite the main representative bodies – the British Medical Association and the Royal Colleges of Physicians and General Practitioners - being opposed to assisted dying, opinion among doctors is much more ambivalent and divided. In Tallis' opinion, the majority of doctors want their representative bodies to be neutral on assisted dying.
I am not against the Assisted Dying bill. We have to be careful of not romanticising terminal illness, or of underestimating the profound suffering caused by the criminalising of those who help a loved one, or a patient, to die. Research published in October 2014, by the pro-assisted dying group, ‘Dignity in Dying’, claims that 7% of suicides in England are among those with a terminal illness. “With the ever-present threat of prosecution for assisting a suicide”, Dignity in Dying argue, “the issue is forced behind closed doors and people end their lives in unsafe, unregulated and distressing circumstances.”
I imagine that there are few experiences that are as frightening as ending your life alone, or slowly through starvation, as Debbie Purdy, a longtime campaigner for the right to die, did recently. At the same time, I can’t help thinking that we could miss something valuable, should we succumb to the belief that we can chemically master or suppress suffering and ontological insecurity by legalising the right for a competent adult to ask for a doctor's help to die.
I think I'm with Broyard on this one. I would like the choice of having good, inventive and compassionate palliative care. I’d also like my doctor and nurses to be metaphysicians, please.
1. Some of the essays in Intoxicated were published as articles in the New York Times.
2. The irony of Broyard’s valorising of truth-telling is that for most of his life he had denied his African American heritage. It was left to his wife, Alexandra Nelson, to tell their children after Broyard's death.
3. Recent qualitative research with people dying from cancer, in Switzerland, has also uncovered nuanced meanings in the stories patients told the researchers about their wish to die. These meanings included wanting to escape from suffering and, more often, “to spare others from the burden of oneself".