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Commentary: End-of-life storytelling on social media can help us process death

The stigma against open conversations about dying is hindering happier deaths, say Flinders University researchers.

Commentary: End-of-life storytelling on social media can help us process death
The end-of-life stage can be difficult and heartbreaking, but it is also a time to reflect. (Photo: iStock/Pamela Joe McFarlane)

ADELAIDE, Australia: In a recently viral TikTok series, creator Ali Tate Cutler spends time with her terminally ill grandma who has made the choice to end her life through euthanasia.

While sharing start-of-life stories - such as ultrasound pictures or childhood milestones - is commonplace, posting end-of-life “journeys” online has users conflicted.

Such stories raise questions of autonomy, vulnerability and privacy, but are ultimately useful in changing how we talk about preparing for death.

DYING, VIRALLY

In Cutler’s series of videos, they show off their outfits before their “last lunch” together. Cutler’s grandma “Bubbie” gives life advice, and they talk through their thoughts and feelings about the euthanasia process.

Cutler’s videos are divisive. Many commenters criticise the attention gained through this subject, commenting, “Why would you publicise this? So wrong.”

However, some recognise it as an important story to tell and reply with their own stories about loved ones, showing kindness to Cutler’s family. Some recent comments have said:

“This needs to be regular practice. Thank you for sharing your story.”

“It’s a blessing to be privy to conversations like this.”

“Sending her love on her next adventure. Safe travels to a beautiful soul.”

It’s telling that many commenters thank Cutler and mention being “privy” to a usually private moment; we hear far fewer end-of-life stories than start-of-life stories.

TALKING ABOUT DEATH AND DYING

As scholars who research health, death and grief, we know there can be stigma and silence around end-of-life stories, despite an underlying obsession with death which pervades our media and social circles.

Experts in the field, such as those working in palliative care, call for more open conversations and stories about dying. They argue that not doing so is hindering happier deaths.

Mentioning death and happiness in the same breath may seem like an oxymoron. It’s natural that death and dying bring feelings of worry, fear, grief and regret. Those who talk about death and dying publicly (as we can attest as researchers in these fields) are often labelled grim, maudlin and even “clout-chasing”.

These reactions are understandable - we are biologically and socially conditioned to fear death. Our brains “shield” us from the reality of death, leading us to imagine it as something which happens to others rather than ourselves.

The “other people” we often imagine dying are elderly people. They can face infantilisation and assumptions that they are forgetful or incapable of making choices and speaking for themselves. Maturity of age, experience, autonomy and storytelling capabilities are overlooked.

Commenters assume Cutler is milking her grandma’s death for “clout” rather than enabling her grandma to tell stories which are important.

Concerns of safety and vulnerability are legitimate and, of course, not all those at the end of their lives can tell their own stories. As life narrative theorist Paul John Eakin states, the breakdown of adult life and memory brings us “face to face with the end of an identity’s story”.

However, assuming that all elderly or dying people are beyond constructing stories of their identities or lives is folly. We must share end-of-life stories - safely, collaboratively - or risk oversimplifying the complexity of dying and denying the autonomy of dying people to share their feelings.

OUT OF PAGES AND INTO OUR SCREENS

End-of-life storytelling isn’t new, autothanatography - writing about one’s own imminent death - is an established literary genre.

This unique genre not only helps us process death (our own or a loved one’s), but also normalises anticipatory grief (grieving before the fact). Australian authors such as Cory Taylor and Georgia Blain have penned their own deaths.

In Dying: A Memoir, Taylor writes: “I am making a shape for my death, so that I, and others, can see it clearly. And I’m making dying bearable for myself.”

Similarly, at the end of Blain’s memoir, The Museum of Words: A Memoir of Language, Writing and Mortality, Blain acknowledges the power of having written her own life and death, stating, “This miniature is my life in words, and I have been so grateful for every minute of it.”

As writers and creators like Cutler demonstrate, the end-of-life stage can be difficult and heartbreaking, but is also a time to reflect. Autothanatological stories, whether written or digital, are a chance to “shape” death and to contemplate the past and the future at once.

THE PLATFORM IS THE MESSAGE

Backlash aimed at Cutler may be due to her platform of choice. TikTok can be denounced as an app for young, vain people creating dance videos and “thirst traps”.

But content about dying is in demand, as evidenced by popular sub-categories “DeathTok” and “GriefTok”. The juxtaposition between lighthearted posts and stories about dying on the “video dance app” can be an adjustment.

Cutler, a Victoria Secret model, posts both kinds of content concurrently. Some users may find this jarring but it demonstrates that loss is an integrated part of life, not something separate. TikTok and similar sites are ripe for developing such nuanced conversations and even cultural practices around death.

Sites like TikTok create a unique space for end-of-life narratives to reach vast audiences through visual, auditory and algorithmic timelines, suggesting content, and encouraging engagement. Users interact with one another, and explore the complexity and inherent contradictions in reflecting on a life while preparing to lose the person who lived it.

As Cutler responds to a commentor, “This was the hardest and most beautiful conversation I’ve ever had”.

These narratives are moving rapidly from the pages of memoir to the instant accessibility of our mobile phones and we must make conscious efforts to be open to diverse stories about dying.

If we interrogate how we feel when we encounter challenging or surprising end-of-life stories, we can broaden the ways we think and talk about dying, and, indeed, even celebrate happy moments among the sad.

Edith Jennifer Hill is an associate lecturer and Marina Deller is an academic at Flinders University. This commentary first appeared on The Conversation.

Source: Others/el

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