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An Alternative Perspective on Grief and Bereavement During Challenging Times

With so much being written about death, dying and bereavement recently, I feel that a post focussing on a more positive narrative might be helpful to counterbalance some of the predictions of negative grief outcomes during this very challenging year.

I’ve chosen today to publish this blog because it’s my nephew Charlie’s birthday.  Charlie died from cancer when he was three and a half years old in 2005, so today he “would” have been nineteen.  So I’ve written this in his memory to highlight that whilst the depth of loss remains the same, our perspective has changed as we’ve adjusted over time.

Bereavement “outcomes” may be considered to exist on a spectrum ranging from post-traumatic growth, through a wide range of what may be considered “normal” adjustment to losses and at the rare end what may be considered by some under the umbrella term “complicated” grief.  (Although it should be noted that many expert academics do not subscribe to the notion that grief can be pathologised into a “complicated” category; this is a contentious area.)

Death and grief have dominated the headlines this year and affected every part of our lives globally. However, despite some of the polarising views on approaches to policies concerning Covid-19, what is clear to me is our overarching capacity for human empathy and compassion for the vulnerable, for key workers and for the bereaved. 

In this short article I’d like to particularly address three items:

  1. The potential impact of Covid-19 restrictions on funerals
  2. The “good” news
  3. What we know helps bereaved people

The Potential Impact of Covid-19 Restrictions on Funerals

The prevailing Western narrative is that the increase in deaths, and restrictions imposed on funerals, will lead to excessive negative bereavement outcomes.  One recent study published by Dr Becker and colleagues in Japan report:

Conducting a full funeral (as opposed to an abbreviated or direct cremation) significantly correlated with overall satisfaction at the funeral. Overall dissatisfaction with funerals correlated with an increased amount of time later lost from work for health reasons. Higher dissatisfaction with funerals somewhat significantly correlated with physical symptoms of grief (p = .038).

However, conversely, the same paper also states:

Boelen  (2019) and Birrel (2020) found no such correlations. We were unable to show that positive appraisals of funerals result in positive health and productivity, but we did find that negative appraisals and abbreviated funerals correlated with lower productivity and higher medical/social service costs thereafter.

From these two excerpts we might consider that Becker’s study is situated within a Japanese Buddhist environment, whilst the Birrel et al (2020) was predominantly UK based and the Boelen et al (2019) study was conducted in the Netherlands so contextualisation needs to be considered.  Every bereaved person will have their own perspective on funeral rituals and what may be considered a ‘positive’ experience by one person may be deemed a ‘negative’ experience by another.  With this in mind, we should be aware that we do not yet know what the long term psychological or social impacts of restricted funerals during 2020 will be within a Western environment and whether they will be short term or long term.   We can however address some of these potential future costs by providing adequate professional support which includes for example; planning other ritualistic events post “lockdown” such as memorial services or other personalised rituals, providing adequate, accessible bereavement support, or providing additional flexible working practices.

The “good” news

Whilst varying mental health issues as a result of the pandemic are currently being recognised and talked about openly, there are many studies that indicate humans are more resilient than we may recognise.   For example, Tony Walter states that; “Shared adversity can foster a sense of community and affinity…”, further, Bonanno and many other academics have published multiple academic texts highlighting the following:

Many people are exposed to loss or potentially traumatic events at some point in their lives, and yet they continue to have positive emotional experiences and show only minor and transient disruptions in their ability to function. Unfortunately, because much of psychology’s knowledge about how adults cope with loss or trauma has come from individuals who sought treatment or exhibited great distress, loss and trauma theorists have often viewed this type of resilience as either rare or pathological.

Perhaps then we should be questioning the perception that all restricted funerals or all deaths during the pandemic will lead to “complicated” grief?  Additionally, with notable experts such as Bonanno, Walter and others publishing extensively on the resilience of individuals, and societies in general, perhaps we should also generate a narrative of positivity post pandemic?  “Language is a powerful tool and, used without consideration, can cause emotional and biological damage.  Neuroscientists have determined that human brains tend to dwell on negativity (it’s a survival mechanism)…” (Lloyd, 2017, p. 48).

What We Know Helps Bereaved People

But what about those bereaved people that are struggling, particularly those who are isolated during “lockdowns”? For those people who may not have access to technology or are unwilling or unable to engage with it, it may be helpful to reach out to them in other ways such as by telephone, or in extreme circumstances; with a socially distanced personal visit.in general, we know from studies such as Newsom et al’s that there are various levels of support for bereaved people and for most, family and friends are a huge source of shared support, where stories of the loved one are told, retold and memorials/rituals are engaged in. Peer support can also be hugely helpful as is evidenced by organisational support such as Compassionate Friends (bereaved parents), Widowed And Young (Widow/ers under 50), Roadpeace (road crashes), SANDS (stillbirth and neonatal death) and Child Bereavement UK (parental and child bereavement) and Good Grief Cafes to name only a few. Professional support is also appropriate for others in the form of specialised grief professionals that can be found at Cruse, Griefchat, and others.

Ester Shapiro eloquently explains in the Handbook Of Bereavement Research why it is important for bereaved people to have social support options available at various levels:

Interventions that use relationship strategically as sources of both emotional regulation and meaning making can help establish more complex perspectives on previously overwhelming experiences as well as more multidimensional and functionally adaptive relationship representations

What is important, in my opinion, is that we, as humans, connect with other humans in the most appropriate way during these unsettled extremely stressful times.  We don’t know, as yet, what the long term effects on bereavement may be following this pandemic but we mustn’t lose sight of the fact that a. humans are resilient and b. post traumatic growth will also be an outcome for some.  The constant pathologization of grief in the media and prediction of increased “complicated” outcomes due to the events of 2020 may lead to some people literally talking themselves into that frame of mind whereas ordinarily they may not have had that outcome.  Supporting the bereaved in the most appropriate way when needed is important for a normal grief adjustment, but we also shouldn’t focus all of our attention on potential disruptive transitions and completely lose sight of resilient or positive outcomes in the long term.

In conclusion, I’d like to thank Professor Schut for his positive feedback on this blog and leave you with a citation from his, and Professor Stroebe’s, 2020 journal article on this subject:

“…there is so far absence of empirical evidence linking features of COVID-19 bereavement
situations to health outcomes. Severe negative consequences have been consistently
predicted by authors. There is still relatively little consideration of positive or compensatory processes or the possibility that these could alleviate the effect of the
shocking, traumatic circumstances.” (Stroebe & Schut, 2020, p. 500).

Thank you for reading this, and special thanks to Dr Jennie Dayes for her generosity in providing critical feedback on the first draft of this article.   I wish you all peace during these challenging times.

Further Resources

For further reading on grief and bereavement you may find my book, Grief Demystified, helpful.

As always, these blogs are copyright protected and may not be used without my explicit permission. If you’d like to contact me I’d be delighted to hear from you at: thegriefgeek@yahoo.com

Miscarriage: Claiming the Narrative

It is with kind permission that I’m able to recreate the following:

Back in 1983, I found myself in an office toilet cubicle miscarrying a 14 week old foetus.  I had no idea I was pregnant because I was using birth control.  I had visited the doctor four times in the preceding two months, and each examination and consultation had resulted in a prescription for increasingly powerful pain killers.  I was given no ‘diagnosis’ or ‘treatment’ for whatever was ailing me.  Just a piece of paper for pills and sent away to just ‘get on with it’.  Despite the painkillers, towards the end, the pain was unbearable and the blood was uncontainable.

I walked to my workplace from the bus stop with blood running down my legs, thankfully it was winter, so I was wearing a long, heavy, dark coloured skirt.  I went straight to the ladies’ room.  The fact that I was in work, doubled over in pain, in shock, and possibly denial, meant that I just flushed my baby away and went to my desk to work.  This was pre-internet, so I returned to the doctor’s surgery several days later, was examined, and it was confirmed that I’d had a miscarriage.  I was sent on my way with a different prescription for contraceptive pills.

I was dazed and confused and wasn’t sure what to think or feel; it was an unplanned and unkown pregnancy.  When I finally confided in a friend a few months later, I was told it was a “blessing in disguise” because I didn’t have to choose between “ruining my life by having a baby at 18″ or having an abortion.  At that time, within my cultural environment, this was the narrative.  I was also told it was just a bunch of cells.”

I’m observing bereaved narratives on the internet over thirty years later as a PhD researcher, and whilst there are similar stories to the above that can be found, there has been a noticeable change.  Advances in technology have contributed to changing the landscape; home pregnancy tests allow women to find out they are pregnant almost immediately after an absent period.  With ultrasound scans available to prospective mothers as early as 6 weeks’ gestation, it is now common to see the growing foetus in utero.  These tangible factors allow prospective parents to see their baby; to formulate future dreams of what they will look like, what they will be like and what their lives may encompass, from a very early gestational age.  These medical advances, along with the internet (particularly social media), has changed the narrative in Western cultures almost entirely.

From an occurrence that was historically perceived to be the loss of a ‘bunch of cells’ and the common platitude of “you can always try again”, it is now common to post ultrasound scans on social media pages with the ensuing proclamations and public announcements of parenthood. Following a miscarriage, some of these women are now posting photos of their miscarried foetus’ as evidence of their loss, and as such, there is a growing movement to allow miscarriages to be registered as a birth.  The internet has opened up a dialogue where these women can claim their identities as bereaved mothers.  Within their bodies and their imaginations, these children were real, they existed, and their death is impactful.  Social media has enabled them to form support groups online, particularly within Facebook, and there is impactful peer support on Twitter such as #BabyLossHour.

Clearly not all women are online, not all women grieve a miscarriage, not all women welcome the news of an unplanned pregnancy.  But there is something empowering about claiming your own narrative and having peer support available, whatever that narrative may be.

As always, this content is copyrighted and cannot be reproduced without my permission.

Grief Demystified..

Please see my previous post about why I had to delete several of my informational blogs. In the meantime I’ve been busy putting all of the information from them, plus a whole lot more, into a book comissioned by Jessica Kingsley Publishers.
The book will be called Grief Demystified and explains everything you’ve ever wanted to know: do men and women grieve differently? why do we grieve for famous people? how do I know if I’ve grieved properly? and what to say to the  bereaved, plus many more questions answered.  It also includes a list of recommended bereavement organisations that provide online resources, offline support and signposting.  It also includes an extensive list of references if, like me, you are interested in furthering your knowledge in grief and bereavement from the experts.

And best of all- there are diagrams and photos for visual learners and the easily bored 🙂

I shall write more blogs soon about the myths that still pervade on social media, because I keep seeing misleading articles and outdated information…

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!

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.

Welcome

Hello, my name is Caroline, I have been volunteering and working within the world of bereavement and pre-bereavement since 1988 when I experienced my first death.  Since then I have been bereaved many times in many ways and as a ‘Thinking Griever’ have tried to make sense of my own experiences through research, education and training, whilst supporting others too.

Whilst working full time, I was also a bereavement volunteer with a national charity, I facilitated bereavement support groups, ran grief workshops, was a Trustee for another national charity, delivered training on grief & bereavement, and I was commissioned to write a book for JKP; Grief Demystified: An Introduction which is being used on undergraduate and post graduate courses.

Please feel free to comment on my posts or if you would  like any further information or signposting please contact me directly & I’ll be happy to help.

Email: Thegriefgeek@yahoo.com

 

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