Bridget Sumser, LMSW writing in www.geripal.org has a short yet powerful post titled “The Importance of Language”.
Sumser addresses the idea that language used to communicate with patients and caregivers struggling with depression can have a therapeutic power. She uses a powerful though all to communal example:
Question: What’s her (the patient’s) code status?
Answer: “She is a DNR”
You see it as well? She is not Marge or Jane. She is DNR. What struck me is not the obvious the act through language of taking a person and reducing them to a behavior or action. What was interesting is how language, which we all know, drives message, sent message message received. What do individuals hear with the words we use?
I am not going to deconstruct the couple arguing over he said she said and how one word in a statement or comment or observation can evoke a response. How we communicate especially around the topic of palliative care, hospice, end-of-life makes all the difference in the uptake of knowledge and understanding especially if we are advocating to those who have not experienced any of these. Those who live in the echo chamber of end-of-life and have been touched by it with a loved one do not readily reject language or miss meaning since we share a common vocabulary. But our online voice and though chats, blogs, etc. reach those who are not familiar or share our common bond. Therefore language, words, and images drive meaning, understanding, and uptake.
In The Sun Magazine interviewed Katy Butler. Butler is a journalist and novelist who wrote about her fathers stroke and how modern medicine decreased his chances of a good death. “The Long Goodbye” is that interview which you can read.
Butler in her interview uses language to communicate her points very well and I see those words and images as tools we can use to communicate beyond the echo chamber we reside in online. Here are some examples that speak to our message and may connect better with those who do not share our experiences.
“Death used to be a spiritual ordeal: not it’s a technological flailing. We’ve taken a domestic and religious event, in which the most important factor was the dying person’s state of mind, and moved it into th hospital and mechanized it, ..”
“…when we eliminated sudden death death, we also eliminated natural death, and we lost the distinction between saving a life and prolonging a dying.”
“We’re not isolated atoms in space — at least, that’s the way I see it as a Buddhist. We’re part of a web of existence, and the “patient” is not just the patient but the family that will survive him.”
“If you’re a doctor, I think you have to look at whether you’re adding suffering to the family as a whole when you extend the life of an individual.”
These are some examples that connected with me and believe will connect with others facing end-of-life or earlier when they have a diagnosis that will end in death. Those are powerful images from Butler’s interview and the narrative about her father and mother. These are the messages we can use to communicate and use as discussion points when we write or speak on these topics. I am not dictating one message over another, her words vs. your words, vs. my words just that the broader and more expansive our vocabulary the better the chance we have to send a message that is received. Of course our listeners our audiences need to be receptive to learning but that is an entire separate discussion on adult learning.
For me there is no good death. All death sucks. What we can do is advocate for and try to achieve a good dying so everyone involved is present and active in life and family during that time.
2 thoughts on “You Talking to Me? Language and End-of-Life”
I think you would be interested in my book "A Hospital Bed at Home: Family stories of caregiving from diagnosis to death". More information about it is available on my website http://www.janenecarey.com or on its Amazon page at http://www.amazon.com/Hospital-Bed-Home-caregiving-diagnosis/dp/0992423600/
I would be happy to send you a free ebook copy to review – I would love some help to make sure families helping their terminally-ill loved ones have an affirming, supportive resource like this, so they know the challenges they face are shared.
The back cover blurb reads:
A Hospital Bed at Home is a linked collection of true stories about the experience of being a carer during the weeks, months and years that can stretch between the day someone you love is diagnosed with an incurable, fatal disease and the day of his or her death.
Couples facing separation after forty years together; a workaholic with three small children and a dying, angry wife; an Irish immigrant called home to nurse an ailing father who cannot, or will not, eat; a Buddhist couple striving for serene acceptance of a brain tumour… The patients and carers profiled in these stories bring to their challenging situations the gamut of typically human strengths and weaknesses, plus all the baggage of their pre-existing relationships.
The narratives are intensely personal and biographical, but the insights and information they contain about illness, caregiving and dying at home have profound and general relevance. The author’s reflections on these topics are woven throughout, linking the individual stories and concluding with a gritty memoir about caring for her own mother, an anxious optimist who was ravaged by cancer.
Janene, thank you for the comment and I would welcome the chance to read your book, post a review, and hopefully a podcast. Though I will mention that your stories will be very raw for me. It is coming up on three years this August Donna died. Contact me on Twitter @marksphone and we can direct message our email addresses. Again, thank you.