Death and Culture in York- My Thoughts..

I just wanted to return here to document some interesting ideas and information I gleaned from the recent Death and Culture Conference at York University. The conference was an interdisciplinary event involving a wide array of perspectives across the full range of death, dying and bereavement topics, but not excluding other related areas.  Here is a summary of my highlights from a varied and fascinating three day programme:

Dr Karina Croucher presented a very interesting talk about her partnership with Christina Faull of LOROS Hospice in Leicester on their joint research, combining archaeology and continuing bonds.  An unusual combination on the surface until she explains ‘I study the mortuary practices (i.e. the ways in which people reacted to death and treated their dead) in the past’ and then you realise this joint research is completely logical and will be fascinating when completed.

Brenda Mathijssen spoke on the theme of continuing bonds.   She talked about the wearing and retention of ashes and how these items, created from the remains of our loved ones, are so significant when we are initially bereaved, but over time they lose their significance.  The continuation of bonds that are so necessary for us to grieve, ultimately become transformed bonds- which reminded me of J. William Worden’s final stage of relocating the deceased.  Interestingly she stated that there is a 30 day waiting period in The Netherlands after cremation before you can collect the ashes.  Those 30 days are designed for thinking and processing.

Dr Heather Conway raised the issue that there are currently 3.5 billion internet users worldwide, so  consideration should be given to the legal aspects concerning our digital legacy.  There are many issues to consider: what is a digital asset and what expires at death, the etiquette of virtual cemeteries, digital wills, Facebook memorials, other social media sites and legacy or deletion decisions.  She asked; are digital companies sustaining the view of an afterlife, how are the hierarchies of grief affected, what about contested narratives, what should the virtual memorial rules be etc.

Chao Fang delivered a fascinating presentation on the advent of ‘Shidu’ or the loss of an only child in China.  Due to the government policy of one child per family, the death of a child has political ramifications that perhaps don’t exist in other cultures.  Additionally, older people in China are reliant on their children as there is little social support, so the loss of their child has significant secondary loss implications, including financial implications.  There is also a ‘shame’ in not having children in China, that makes them feel that they are ‘unable to face their ancestors’ after the death of an only child, and that this is ‘the most distressing thing ever’.

There were also talks that discussed the issue of the ‘social dead’ i.e. slaves in Capetown and Barbados. I wondered about the bereaved and their ability to process meaning making after such heinous events, but the focus was on the deaths and lack of memorialisation not the living…

There were also presentations about the sensationalism of murderers and the lack of narrative surrounding the victims. I wondered if I would welcome public reminders of my loved one if they had been murdered?

Lastly a special mention & thanks to Dr Ruth Penfold-Mounce and colleagues for organising this event, it must have been a lot of work but well worth it – a fabulous time was had by all!

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.