The Importance of Stories: Children, Dying and Death

It is my pleasure to host an essay by Dr Rachel Fearnley who is a research consultant specialising in children’s lives when a parent has a life-limiting physical illness.   In my book I introduce the concept of anticipatory grief as the process of grieving before a person has died and the impact of witnessing terminal or degenerative illnesses.  I have also written an earlier blogpost about the language used when referring to cancer.  Dr Fearnley’s work dovetails into my research and has very kindly accepted my invitation to provide an insight into her research and expertise into how children’s lives are impacted as a result of a parent’s life limiting physical illness.

The Importance of Stories: Children, Dying and Death

‘We live in stories, not statistics’ (Gilbert 2002). Anyone who has heard me speak will be familiar with this quote, how it is representative of my career and how the sentiment held within it is core to my values. Stories have always been central to my career starting in the early 80s when I was employed as a nursery nurse. For me story-time at the end of each session was a magical, special time to be treasured. I always enjoyed telling the young children stories which captured their imaginations and took them off on wonderful adventures and to different places and situations. Later as I changed career the emphasis shifted from telling stories to listening to other’s stories and helping them to try and begin to make some sense from what was happening in their lives. Through this role in family support I became increasingly interested in social and emotional aspects of dying and death.

This curiosity led me back to university where I undertook a PhD which explored children’s experiences when a parent is at the end of life. My research was  qualitative, and at its core was the emphasis on listening to children’s stories about their experiences. Within the research process I encountered gatekeepers who wanted to protect children from being exposed to the research. I was told that it would ‘upset’ the children if they started talking about what was happening in their lives and that it was therefore inappropriate to begin to explore with them their thoughts, feelings and stories. However, when I did find people who were willing to engage in and support the research I was overwhelmed with the openness and honesty from the children and young people I met. Yes some were upset talking about what was happening after all it was an emotional and very personal topic. But our meetings were contained in a safe place and were managed by a person who genuinely wanted to listen and take time to try and understand. The participants were engaging and shared their stories willingly and moreover all said how it had been helpful talking to someone who was really interested in their stories and who was prepared to listen without passing judgement.

Their stories often shared a similar theme; they wanted to be involved in conversations about their parent’s illness. However, for many this was not always the situation. There was a sense that adults tried to protect them from the realities of what was happening. There was a view that children were ‘too young’ to be told or that they didn’t need to know because the information would be too distressing. However, the children and young people I met generally held a very different perspective. They all had a ‘knowing’ that something serious was happening in their family, even when this had not been articulated to them. In these situations there was a tendency for them to put two and two together but not make four. They spoke about picking up cues from observations (of their parent’s behaviour and changes in their health) and from overheard conversations. For some young people there was a sense of frustration that they were being ignored and that indirectly they were being given the message that they were not important in what was happening within their family. This, I think, is a sad reflection of how in society there continues to be a need to exclude children from dying and death.

Tony Walter (1996) has written about dying and death from a sociological perspective. Within his work he suggests that an important element following a death is for individuals to be able to talk to others about the deceased person and through this to develop a ‘durable biography’. This durable biography, according to Walter, not only allows them to learn more about the deceased person but also about themselves. He suggests that the process by which this is achieved is through conversations and discussions with others who knew the deceased person. The maintaining of the relationship, Walter argues, is substantially achieved by talking about the deceased person with others who had known them, sharing stories and memories, adding previously unknown information and also challenging previously held assumptions about them. I have built on Walter’s work to suggest that during parental illness, children are ‘writing’ a penultimate chapter (Fearnley 2015) about the illness. This is a prospective chapter and the quality of its content is dependent on the extent to which children are included in conversations and information sharing about the illness. The ‘writing’ of the ‘penultimate chapter’ is important in helping children make meaning from their current lived experience and helps prepare them in the writing of their final chapter about their parent. However, when children are not included in conversations they are then not able to ‘write’ a meaningful penultimate chapter about their lives with their ill parent.

I wonder whether as adults we are afraid to listen to children, are we concerned about what we might hear? Certainly in my research there was a sense that sometimes professionals (mainly from within health care) were concerned that they would be ‘opening a can of worms’ if they started talking to children about the illness. Other worries were that such conversations would take too much time or that they were not qualified to work with children. As one nurse said to me ‘I work with adults not children’.  These findings are congruent with recent research that again highlighted that health care professionals often felt that the children of patients were not their concern (Franklin et al. 2019). I wonder if there needs to be a shift so that professionals who work with adults also feel confident at least talking to children.

Recently my relationship with stories has taken a new and totally unexpected direction. After some years of trying to raise awareness about the importance of supporting children and families during parental life-limiting illness with the feeling of little success, I was encouraged to write a novel as a way of exploring some of the typical issues families and children experience during the illness. Our Family and IT is the story of an ‘ordinary’ family faced with extra-ordinary changes and challenges following the mother’s diagnosis of ‘IT’ an unnamed illness. I did not want to focus on one illness but rather on the social and emotional impact any life-limiting illness has on family life. I carefully considered the ages of the three children for maximum impact within the story; each family member narrates the story of their lives following the diagnosis. I have tried, based on my research findings, to tackle some of the important issues that families typically face during this health crisis. These include communication, identity, emotions, parenting and support. Within the book different dilemmas and challenges are explored, for example do the parents tell their children what is happening, how school and friends manage the situation and what happens to teenage boys when they are not listened to. And so with the publication of the book, I feel my relationship with stories has come full circle.  However, my opinion remains that as a society we still have some way to go before children are included, to the extent they want to be, in stories of dying and death.

For more information on Dr Fearnley please see here:  http://www.rachelfearnley.co.uk/

To buy Dr Fearnley’s book please see here: http://www.rachelfearnley.co.uk/http-www-rachelfearnley-co-uk/

Twitter: @RachelFearnley1

 

References

Fearnley, R. (2015) Writing the ‘penultimate chapter’: How children begin to make sense of parental terminal illness, Mortality20(2): 163 – 177.

Franklin, P., Arber, A., Reed. L., and Ream, E. (2019) Health and Social Care Professionals’ Experiences of Supporting Parents and their Dependent Children During and Following, the Death of a Parent: A Qualitative Review and Thematic Synthesis, Palliative Medicine 33: 49 – 65.

Gilbert, K. R. (2002) Taking a Narrative Approach to Grief Research: Finding Meaning in Stories, Death Studies, 26: 223-239.

Walter, T. (1996) A New Model of Grief: Bereavement and Biography, Mortality, 1(1): 7-25.

 

Do as I say and not as I do…?

Today I’m hugely conflicted.

I awake to a smart phone that flashes and beeps 24 hours a day, 7 days a week with social media notifications, and bereavement alerts of one description or another.

But today is not just another day; it’s the anniversary of my nephew’s death.  So I have notifications and reminders of this fact via Facebook, emails & texts- as if I wasn’t already acutely aware of the date.

The conflict is whether I share my memories or photos, or my feelings in such a public forum.  Do I change my profile picture? Post a photo of my nephew? Post a loving memorial telling ‘the world’ how much he’s loved and never forgotten?  Or do I keep quiet, and privately remember, and treasure our short time with him, and all the joy he brought in the three and a half years he was with us?

As a bereavement support worker, I’m an advocate for being open about death, dying and bereavement; a death denying society is not a healthy one in my opinion.  Death is a natural part of life, and grieving is necessary and healthy.  But I’m not sure I want to express my thoughts and feelings in such a public way, or to people that never knew my nephew.

Which brings me here.  To a fairly private, largely anonymous forum where I can express myself to those who ‘get it’, without the platitudes, and devoid of the ‘stalkers’ who are my friends that read but don’t comment..

This is my way & you will have your way.

So this is my tribute to a beautiful child that touched our lives in so many ways.

Always loved & never forgotten 💛

 

Does it matter how we talk about illness, death & grief?

“When I die tell the world what happened.

Plain and simple.

No euphemisms, no flowery language, no metaphors.”

Immortal words written by Lisa Bonchek Adams (Lisabadamscom, 2014) before she died from breast cancer.

The terminology around grief, death, and dying led to a recent conversation about the language we use to refer to cancer patients.  This in turn has led to copious amounts of reading on this subject to try to determine if language is helpful or detrimental during illnesses, death, and grieving.  All of the newspaper articles, news items, and social media posts we have seen have one thing in common: we use our language as metaphors to refer to these events, more specifically in “war” metaphors and/or “journey” metaphors.  Although we are noticing a lot more donning of battle armour than compass reading.

You would have to be avoiding all social media or conventional media not to be aware that the words “battle,” “fight,” “lost,” “won” etc. have become synonymous with the experience of cancer.  Do they originate from the patients, carers, Health Care Professionals, or Journalists?  And does it matter who uses the labels; are they useful or detrimental.  These are the questions we found ourselves asking and looking for answers to.

The earliest written reference to this we could find was with regards to Susan Sontag who raised this issue in her book Illness as Metaphor in 1978 (Sontag, 1978).  In the book she challenged the prevailing attitude of patient control; does the patient have control over whether they became sick or could “battle” an illness? Her view was that illness is a biological condition and using metaphors to refer to the disease had a shameful or discouraging effect on patients.  As a cancer patient herself at that time, the notion that patients had some control over whether they developed certain diseases or had control over whether the treatment would work, or not, was offensive to her.

Following on from this in 1999, the late journalist John Diamond was referred to in the BMJ (McCartney, 2014), and quoted as saying “My antipathy to the language of battles and fights has….everything to do with a hatred of the sort of morality which says that only those who fight hard against their cancer survive it or deserve to survive it – the corollary being that those who lose the fight deserve to do so.”  So if the evidence points to respected journalists historically opposing such “battle” language, how did it become endemic within society?  Did it slowly creep in via other journalists or can we answer this question by looking at whether patients, their friends and family (carers), and/or healthcare professions (HCP) find the use of metaphors surrounding cancer useful in any way.

On a mission to answer these questions is Professor Elena Semino and colleagues at Lancaster University, who have spent the last few years studying the frequency of use of metaphors with regards to cancer and how they affect different people of the three groups identified above: patients, carers and HCP.  Her video lecture explaining the study and the results can be found here: https://t.co/KScIADr0ts .  They used sophisticated software to analyse 1.5 million words gathered from open social media sites and interviews, and confirmed that the two most common metaphors used were what she termed “violence” and “journey.”  We are all familiar with “violence” words – battling, winning, losing, fighting, war on cancer etc.  “Journey” words and phrases are also familiar – “it’s the start of a long journey,” “I’m on the road to recovery” etc.  Semino at el.’s (2015) findings were that language seems to polarise in this area; it is either hated or loved.

On the positive side, it is used by fundraisers such as Cancer Research UK who use journey metaphors such as “Race for Life” to inspire and encourage, and Macmillan who use “Survivorship” to motivate patients who have “beaten” their cancer.  Semino et al. (2016) also found that patients use journey metaphors “in a very empowering way” and violence metaphors are used by patients to find “purpose” and “meaning” by defining themselves as “fighters.”

Conversely Semino et al. (2015) found they can also have a detrimental effect.  Some people find they “don’t want to be on a road they don’t know how to navigate” and how do people with cancer battle with themselves?  Cancer patient Kate Granger (Granger, 2014) wrote in The Guardian newspaper; “‘She lost her brave fight.’ If anyone mutters those words after my death, wherever I am, I will curse them. … I do not want to feel a failure about something beyond my control.” Granger is a medical doctor and was diagnosed with terminal cancer prior to writing this article which makes you wonder how someone who knows they will die from an incurable disease can “fight” it?  I recall one of my friends vowing to “fight all the way” when he was diagnosed with bowel cancer a few years ago, but then again he was an ex-member of the British army so the terminology was part of his identity.  The “fighting” talk slowly waned as his cancer metastasised and it was clear that he was terminally ill. In retrospect, I wonder if he ever felt a “failure” for not “beating” it or if he ended his days satisfied that he had accepted any appropriate treatment that could have helped him and was accepting of his situation.

My point here is: however you choose to label yourself or what language you choose to use with regards to your body and your life is just that: your choice.  If you find battle or journey statements and metaphors helpful to deal with the psychological effects of being diagnosed and treated for cancer surely we should respect that.  However, I think if we impose it on someone that’s where the problems arise: we are imposing our expectations on them.  That they will “battle,” that they will “win” as if somehow it is within their control.  Contributing to making someone feel guilty or a failure is disempowering and surely unethical.

My conclusion is that there is the illusion of control with cancer if we use metaphors and perhaps that’s what someone needs in order to psychologically cope with the diagnosis of what used to be referred to as “The Big C.”  Does the thought of our impending death suddenly become a battle that needs to be fought?  We are one step closer to death every day, whether healthy or not, and we need to accept that as individuals and society.

If our loved one “battles” and “loses” their “fight” with cancer we are left to grieve their death.  With metaphoric expression there is the possibility that families and friends will be left wondering if their loved one did not “fight” hard enough or if they could have done more to help them.  This can potentially lead to further distress, anger, and guilt.

My view is that a good death leads to good grief and that can only happen if we discuss end of life issues open and honestly in whatever language is appropriate for each individual.  As end-of-life doula Anna Lyons (Lyons, 2016) says “Death is not the loss of a battle. Death is a natural part of life.

References

Granger, K. (2014, April 25). Having cancer is not a fight or a battle. Retrieved 8 May, 2016, from http://www.theguardian.com/society/2014/apr/25/having-cancer-not-fight-or-battle

McCartney, M. (2014). The fight is on: Military metaphors for cancer may harm patients. Retrieved 11 May, 2016, from http://www.bmj.com/content/349/bmj.g5155

Lisabadamscom. (2014, 10 October). Re-post of “When I die” – Lisa Bonchek Adams. [Weblog]. Retrieved 8 May 2016, from http://lisabadams.com/2014/10/10/re-post-die/

Lyons, A. (2016, March 21). “Hospitals are not a good place to die”. Retrieved 8 May, 2016, from http://www.netdoctor.co.uk/healthy-living/news/a26269/hospitals-are-not-a-place-to-die/

Semino, E., Demjen, Z., Demmen, J., Koller, V., Payne, S., Hardie, A., & Rayson, P. (2015). The online use of Violence and Journey metaphors by patients with cancer, as compared with health professionals: a mixed methods study. BMJ Supportive and Palliative Care. doi: 10.1136/bmjspcare-2014-000785

Sontag, S. (1978). Illness as metaphor. United States: Farrar, Straus & Giroux.