In this day and age, few subjects are more difficult to discuss than those of illness and death. Why is it, when both birth and death are such natural and necessary parts of life, only birth has a solid action plan in place? Why have death and illness become untouchable topics of discussion in society? This panel debate, Death – Final Matters, attempted to answer these questions. Thus began an evening of discussion that ranged from the language used to discuss death and illness, to the idea of assisted dying. Chaired by Nick Robinson, presenter of BBC Radio 4’s Today programme, the panel consisted of Dr Kathryn Mannix, Consultant in Palliative Medicine at Newcastle Hospitals, The Revd Jeffrey Risbridger, and Andrew McDonald, Chair of the Board of Scope and former CEO of the Independent Parliamentary Standards Authority (IPSA).
“the easiest way to talk about it is to take cues from those actually going through it and to be humble enough to ask”
The first question raised was, arguably, the most important: Should we talk about it? And, why? This then prompted a wave of discussion over the tabooed nature of discussing any form of disease or illness. There exists a ‘culture of silence’ mentality that seems to surround the whole topic, meaning it is exceptionally difficult to discuss the nature of illness, terminal or otherwise, without fear of repercussions on all levels (be it professional or personal). McDonald talked about how he didn’t want to be complicit in the continuance of this culture of silence, so he became the most senior civil servant who was open about living with a disability. In talking about his diagnosis of Parkinson’s, he hoped to make headway in creating a space where people could discuss their illness. Dr Mannix put forward an interesting point on this topic, arguing that once people hear what is happening they often band together to discuss it if there are echoes of what is going on in their lives. Resultantly, these little communities of support will declare themselves, which is why it’s important to discuss the topic of death and illness because often it will prompt support groups and inclusivity.
The language used when discussing these issues has often caused controversy. There has recently been a backlash against certain terminology used to describe death, and how people describe those dealing with disease and illness. Using words like ‘battling’ or ‘tackling’ has been criticised for being unnecessarily violent, and can upset people, or even become a burden on those who are suffering. It was at this point where Dr Mannix simply stated that the easiest way to talk about it is to take cues from those actually going through it and to be humble enough to ask. Revd Jeff posits the view that language is very important – and very telling – when talking about death and dying. His concern lies in when people try to sanitise death, by using entirely banal language that implies a gradual and gentle decline. He is struck by people who talk about people ‘passing’, or when they read poems about people not being dead but being ‘just in the next room’. There seems to be a fear factor in the language of death that makes the whole discussion even more taboo. Equally, it became very clear that the right language needs to be clarified, because by not using the language it could be a damaging avoidance tactic. Discussing these topics will only serve to normalise the process.
And the process should be normalised. It is a natural part of life that should be discussed in as much detail as people want to. Dr Mannix raised the interesting point that for three generations it hasn’t really been seen as a normal physiological process, because as a community we have become so adept at preventing preventable diseases that dying younger is becoming less common. Indeed, Revd Jeff furthered this thought by saying the whole process has become ‘more sterile’, e.g. bodies being kept with undertakers as opposed to the coffin set up in someone’s living room. This means the process doesn’t feel as real, and seems more abstract for the youth in particular. Indeed, suggesting we should all try and talk about it more as a whole, Revd Jeff argues death needn’t be morbid at all; rather a natural course that should be accepted.
“we must first accept that death, as a part of life, simply isn’t going away”
There are some basic points about demography that do help explain why such a cultural shift has occurred. If one examines the nineteenth century, infant mortality rates were shockingly high, which meant that death was much more accepted by the Victorians as a natural course of life. Nowadays, the process of death is so sequestered, with only about 22% of the population dying at home. Andrew McDonald suggests that people need to start having a much more open debate about death, and realise that we are making a lot of implicit decisions on where the discourse is going in public opinion and media.
In a year of such unbelievable events, where confusion and uncertainty have wreaked havoc on a global scale, a talk on defining the narrative of death could seem superfluous. This just isn’t the case: this debate seems, now, even more prevalent than ever. In such a time of social insecurity, why not go back to basics as a society? Yes, it may seem like an insurmountable and terrifying subject, but the whole point of discussing these things is to get rid of the ingrained fear-factor and ease the transition and conversation for those facing disabilities, illness or an uncertain future. Is it not our mission to truly make ours an accepting society – one that Mr. McDonald wished for when he went public with his diagnosis? These speakers all concede one thing: to truly progress our discussions around the eternal taboo, we must first accept that death, as a part of life, simply isn’t going away.
Image: National Theatre