A Much-Needed End of Life Conversation with My Mother
My initial reaction to my mum's stage IV colon cancer diagnosis in the spring of 2015 was not to discuss her end of life plans. Instead, I marked a future date on my iPhone calendar titled "Mum Beats Cancer Party." Despite the grim diagnosis, my sisters and I chose relentless hope as our primary course of action.
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I cover this same topic in my book, So Sorry For Your Loss. The event marked in my calendar came and went without any celebration. My mum bravely endured nearly four years of chemotherapy. We felt it impossible to discuss topics like hospice care during her fight for life.
The Fear of Accepting the Inevitable
We believed hope was the most valuable gift we could provide to her and ourselves. Essentially, we were terrified of even considering her potential departure.
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Throughout the process of writing So Sorry For Your Loss, I spoke with palliative care doctors, counsellors dealing with grief and a death doula. They all agreed that such distressing discussions should happen long before the illness, reducing the associated fear and anxiety.
Society's Stance
Death and grief are not popular topics of conversation, both in the U.S. where I reside and in the U.K. Most people tend to evade these subjects until forced to confront them.
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We were jolted into confronting this reality when my mum was hospitalised in fall 2018. Her condition had deteriorated to the extent that the doctors stated they could not do anything more. My father, sisters, and I were left to navigate an overwhelming amount of paperwork and horrible choices during our most challenging time.
The Conversation That Never Happened
If we had had those uncomfortable conversations before my mum fell ill, perhaps the initial stages of losing her would have been slightly less devastating. Because of this experience, I knew I needed to talk about our end of life plans with my healthy and relatively young husband.
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I made it clear that I do not want our only child to feel guilty if he chooses hospice care for me over bringing me home. Having that difficult conversation before someone's life is at stake is crucial. It may not alleviate the pain of loss, but it's beneficial to have transparent discussions about our wishes and will make the inevitable slightly easier to bear.
The Hospice Experience
A study conducted by The Nuffield Trust and Hospice UK found that in 2020/2021, hospice services were provided to approximately 300,000 individuals in the U.K. Many people shared they had positive experiences with the hospice care provided. Despite this, being responsible for the care of a loved one on their deathbed is a profoundly traumatic experience, and it can be more difficult than people anticipate.
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Discussing hospice, death and end of life matters is uncomfortable and not a topic to bring up at every occasion. However, it's highly recommended to have these talks before someone falls ill as it can ease some apprehension. This conversation might not be something my husband looks forward to, but having these discussions now could lessen our grief during an unavoidably difficult time in the future.
Dina Gachman is a highly respected journalist, recipient of a grant from the Pulitzer Center, and author of the new book So Sorry For Your Loss: How I Learned To Live With Grief, and Other Grave Concerns.
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