by Matthew Townsend
We are born. We live. We die. That said then, death is the only event in life of which we can be certain: an event that, it could be argued, is implicitly linked to life itself. Without life, there can be no death yet, in order to live, so too must we realise that we will, eventually, die.
The thought of death and dying often provokes discomfort and is a conversation that many prefer not to have. When people ask me what my clinical interests are, my passion for end-of-life care is often greeted with an uncomfortable silence. And for very good reason.
“Should we enjoy these conversations with our patients and their families?”
As Vanderveken et al (2019) observe we, as a species, are both hesitant and reluctant to talk about death. It brings into our conscious stream of thought the very thing that we often consciously attempt to avoid: the reality of our finite existence.
This is confirmed by Doughty (2017) who has coined the phrase ‘death avoidance’ to define the process via which someone refuses to engage in anything to do with death or dying.
Often, such thoughts can provoke death anxiety; a psychophysiological response in reaction to contemplating one’s own finitude or threat to one’s existence.
This is considered in research carried out by Fernandez-Dona ire et al (2019) who report that death anxiety can manifest as panic, fear, upset, and physiologic malaise.
Avoiding these conversations, and the necessary reflection and contemplation that accompanies them, has resulted in the end of life being a chapter of our existence shrouded in taboo and forcibly pushed to the back of our minds.
If we consider our life as a story, the closing chapter is one we shy away from reading, even though it is a necessary one in order to sign the book off as complete.
The fear prompted by the thought of death has not simply resulted in an avoidance of it as a topic: a conscious repression of our fears and anxiety has translated into an almost insurmountable problem.
The harsh reality is though, whether or not we choose to admit, we will, eventually die and, in fact, based upon my experiences in clinical practice, is something rarely feared by those living at the end of their lives.
Through my nursing career so far, I have been privileged to sit at the bedside of many people who are approaching the end of their lives: they may have a chronic condition with no trajected end point or are coming to the end of a terminal illness, with only a matter of days or hours left.
Whether the former or the latter, there has often been a common thread between the two: a beautiful, almost existential, peace. Rarely fear. Rarely panic.
But instead, an inspiring positivity and solemnity that confirms to me that the fear we burden ourselves with through the course of our lives can restrict us in our living and is, in any case, unfounded.
This considered then, how can we condition ourselves to not fear the end of life, and how can we approach death with a positivity that seems almost incongruous with its finite state?
Many of the conversations I have had with those at the end of their lives echo research in the field that regards spirituality as an important aspect of end-of-life care with its acknowledgement significantly reducing fears and anxieties (lnbadas, 2018).
That said, let us not confuse spirituality with religiosity. As Tornoe et al (2017) note, spirituality focuses on factors such as relationships, meaningfulness of life, and feelings of self-worth.
Indeed, the World Health Organization (2017) positions the construct of spirituality central to its definition of quality of life, not only recognising it as key, but acknowledging that it becomes more prevalent as one approaches the end of one’s life.
Reading the WHO’s definition of quality-of-life alongside definitions of spirituality, it can be seen how a good quality of life can necessarily translate to a good quality of death.
“I recall with great fondness when I heard roars of laughter from his side-room”
To live in recognition and acknowledgement of death as opposed to in its shadow, will help us remove this taboo and will ultimately improve our relationship with it.
This reinforces my earlier observation: life is inextricably linked to death and to discount the latter negatively impacts the former.
As Lemaster and Moyer (2020) note, our lived experiences and the extent to which we feel we have lived full and meaningful lives removes fear and anxiety of end-of-life issues.
Embracing life will aid us in not just enjoying it but in ensuring that this enjoyment will help remove the fear of death.
Conversations I have had with those who are dying are some of the most privileged and enjoyable I have had in my career.
When I admit this to my family, friends and work colleagues, I am met with the same uncomfortable silence as when people ask me what my clinical interests are. An awkwardness possibly precipitated by using the words ‘enjoyment’ and ‘death’ in the same sentence.
Should we enjoy these conversations with our patients and their families? Should we approach death with a positive optimism?
My answer: absolutely. To acknowledge that someone is dying is not a sign of failure. To acknowledge that someone is dying will not hasten your own death. To acknowledge that death forms an integral part of life should not invoke fear.
Conversely, it should be embraced. It is, after all, our final accomplishment. Conversations I have had are filled with fond memories and often bursting with smiles, happiness, and celebratory nostalgia.
I have recently helped nurse a patient who was at the end of their terminal illness. A similar age to myself, it was a particularly sobering experience. Young people are not supposed to die: it goes against what we are told is the natural order.
We are born, we live, we die and we hope that this last chapter is one that is written many years in the future. Anything that digresses from this catches us off-guard.
Following my patient’s admission to the ward, I soon noticed a common behaviour: an avoidance of talking to him about his death.
Research has shown that nurses are notoriously bad at actively engaging with death (Anderson et al, 2016).
Let us not be too harsh though: we are, after all, only human and to have to deal with it forces us to face our own mortality. That said, my patient was facing his and I was determined that he would not face it alone.
“If we consider our life as a story, the closing chapter is one we shy away from reading”
Over the next few days, we built a strong nurse-patient relationship where we discussed all manner of things.
There were sad moments, but also moments where we both heartedly laughed at, for example, his bucket list and that, in his words, how he was “going to kick the bucket before ticking items off it”.
Through the course of our conversations, there was again a notable absence: fear. He was not afraid of dying, merely sad that he could not have lived a little longer.
This was the significant difference. He also noted that the fact I spoke with him so openly about his death was “refreshing” and “reassuring”.
I recall with great fondness when I heard roars of laughter from his side-room. His mother emerged with an empty teapot and tears in her eyes. Happy tears? Sad tears? A combination of the two? “Are we being too loud?” she asked.
I smiled and shook my head. “Be as loud as you want to be,” I replied. When I checked my patient later, the room was filled with laughter; it was filled with love; it was filled with happiness.
Family and friends had come together to acknowledge what was inevitably happening and to celebrate his life. Fear was nowhere to be seen. Fear would have been out of place. When my patient died, his mother thanked me.
She noted that my positive approach to her son’s death not only helped him, but that she no longer feared death and that she had not realised how simple it was to die.
This woman had witnessed what it actually meant to die and that death is, in fact, usually an incredibly peaceful event.
Kathryn Mannix’s (2015) book, With the End in Mind, aims to remove the taboo of dying and to bring conversations about it into our lived experience.
The observations of my patient’s mother are reinforced in Mannix’s work. As Mannix notes, death, if well managed, is often painless, peaceful and, dare I say, an uncomplicated process?
Significantly, to live in acknowledgement of death is to not live in its shadow. Birth and death are inextricably linked, just sat at different ends of the spectrum of life. We cannot have one without the other.
That said then, to live in fear of death would be a disservice to life. Enjoying life, while simultaneously acknowledging death, will ensure that when the time comes, we approach it not seeing it as something to fear, but instead as a celebration of life.
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