Words. How we say them and how they are heard are often two different things. One morning my husband and I had a few words over what I gave him for breakfast. I would say it was a “tirade.” He would say it was an “explanation.” That little exchange got me thinking about how words are heard from where the person hearing them is rather than the dictionary definition of the words.
That little exchange then led me to think about words we use in end of life work. Words that reference approaching death and death itself. Words nobody really wants to hear.
The hard, difficult words we say are often received by where the listener is, not just in their thinking, but in their feelings. Words like dead, dying, killed, passed, suicide, at peace, death, all evoke different reactions in different people. Some words are more “uncomfortable” while others are less intimidating, less forceful.
Is what we can hear and interpret based on what we are comfortable or uncomfortable with? Does “at peace” sound more comforting than “He is dead?” Does “killed themselves” sound more jarring than “died by suicide?” I’m thinking maybe it does.
In our work with end of life, we have to say many words that no one wants to hear. Words that present a harsh, sad, scary reality. In educating families, caregivers, patients, and the community, we are speaking words no one wants to hear let alone believe. YET that is our job.
Maybe we who work with end of life situations need to be more aware that others do not necessarily see death as something as natural and normal. That others may take offense at our choice of words because of where they are in their thinking and feeling. That their understanding and reaction to our words has nothing to do with us but with them.
Our job as end of life workers is to educate. We walk a thin line. Our words can be heard and misunderstood so easily. They can be interpreted differently than we intended.
To avoid the pitfall of misunderstanding I ask three questions before I leave a patient/family encounter: Is there anything you want to ask me? Did you understand everything we talked about? Is there anything else you want us to talk about?
Something More… about The Words We Use When It Comes to Dying
If you are in end of life care, please educate your patients and families well. Your CAHPS scores will reflect how well your families understood the dying process. End of Life Doulas who will be at the bedside when death occurs, referrals will depend on how well your families understood the days, hours, minutes and seconds before their special persons death and after.
6 comments
We talk about the language we use and how it affects those we are speaking with very often these days. I am not a fan of euphemisms. I appreciate the clear and concise message. In that way, there is no mistaking what is being communicated. The current trend to using terms like “unalive” and such makes little to no sense to me. The “cancel culture” approach to death, in all its forms, does a disservice to people, in my opinion.
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BK Books replied:
Christine, I agree, direct but gentle. Blessings! Barbara
I’m not sure there are any right words, Barbara.
My husband had told me he just wanted to fall asleep and never have to try to eat again. He was seeing his deceased father in the room, and told me his father had asked him why he was hanging around suffering and keeping me in torment.
The doctor had told me he was “terminal”. My husband chose hospice and was moved to hospice. I had been through hospice before with my parents. At the hospice, the nurse talked to me about my husband’s breathing and the purple in his feet, both things I already knew about from reading your books and from my parents. The nurse said it wouldn’t be long, less than 24 hours.
Yet I continued to believe my husband would come home with me and be okay. I mean really believe.
After he actually died, I continued to dream that he would come home to me and be okay. I continued to dream this even after I had spread his ashes in his favorite place.
A few weeks after my husband’s death, someone said something to me like, “He’s dead and never coming back.” The feeling I had in response was violent, angry. The thought I had was, “Well, that’s not true.”
I’m not crazy. I know what happened. But I still avoid people who might refer to him as dead, no matter what euphemism they’re likely to use. That means I pretty much avoid everyone. It’s like they don’t have the right to define him that way.
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BK Books replied:
Karen, I am so sorry you are having this difficult time understanding your husband’s death. You might write him a letter. Tell him all that you are feeling about this challenging time. Put all your thoughts, fears, concerns, tears on paper. Burn the letter and scatter the ashes to the wind. Whether you can accept that he is not coming back or not, let how well you live your life now be the gift of love that you give him. My blessings are with you. Barbara
Barbara, I love your thoughts and words about words. Being very much a word person, I try to be mindful of my words, especially words I use around end of life. When I was working as an RN case manager, someone on our team in a meeting used the term, “circling the drain.” I cringed when I heard that, and of course I knew what it meant. I also knew that if a team member used it in a meeting that they could then so easily turn around and use it in front of a family member. It could just slip out and our team member might not ever even know it slipped out. Now in this season of my life in going through the so-called grief process, I find I don’t care for the words grief or grieving. I prefer mourning and long for an even better descriptor of this long, lonely process I find myself in. I also find I don’t resonate with the words typically used to describe what I call the Realm of Higher Consciousness. Some call it heaven. There are those who refer to it as the spirit world and the inhabitants there as spirits. I find those terms highly offensive and not even nearly accurate to describe the natural process we will ALL go through. I don’t wish to diminish my loved one’s existence by referring where he is now as the spirit world or the spirits living there. Long story short, we must think about what our words embody and not be too careless with them. I so loved this blog, Barbara.
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BK Books replied:
Hi Paula, I so agree. Words matter. We, in the helping professions, need to be very aware of how we use our words. Blessings to you in the work you are doing. Barbara
I have often observed people’s propensity for using euphemisms to describe death. You make an excellent point that how certain words about death are received depends a lot on an individual’s feelings and comfort level with the topic. It’s almost as though we try to make death conform to a person’s sensibilities or to soften its impact.
What, in your opinion, is the best practice when speaking about death? Are you in the death, dying, and dead camp, or the passed away, transitioned, or at peace camp?
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BK Books replied:
Hi Cynthia, I’m in the be direct but gentle “camp” so that puts me in the using the "real’ words, not euphemisms group. My advice is speak directly, gently and as truthfully as you know it. Use people skills of sitting close, not standing over, looking directly into their eyes, touching if appropriate. And always finish with "Did you understand? Do you have any questions? Is there anything else you want to ask me or talk about? Blessings! Barbara
When I was a little kid, I heard the adults talking about someone who had “lost” their son in a car accident. The only explanation I could think of was that he had wandered off while everybody was looking at the accident. So I asked how old he was (30-something). And then I innocently asked, was he retarded? (This was in the 50s). It was decades before I understood why the grownups looked at me funny.
Then there was the time Sky King’s niece Penny passed out and we never saw her again. (Either the show was dropped by our local station, or we started watching something else). We didn’t remember which one meant died and which one meant fainted: passed on, passed out, passed away?
And bringing a gift to the husband of a woman who had been brutally murdered in front of her shop (nobody reported her desperate screams); being told, “She passed, you know…”
The lady who was literally burned beyond recognition: “She’s not here anymore…” My first thought was that she went to stay with her daughter, as her apartment was destroyed, until I caught the look in the eyes of the fireman who was handing out new smoke detectors.
Or the lady who missed church and was found to have “gone home.”
Maybe I’m neurodiverse or something, but I hate euphemisms. I say “passed” only to women even older than I am who have known me my whole life, or church ladies.
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BK Books replied:
Hi Jayne, thank you for sharing your experiences. You are so right, euphemisms are confusing at any age. Blessings! Barbara
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