Conspiracy of Silence | Caring Choices

One of my favorite quotes from Dr. Martin Luther King, Jr. is: “In the end, we will remember not the words of our enemies, but the silence of our friends.” Although Dr. King’s intention with these words was probably to call to action supporters of the Civil Rights Movement, I believe these words can inspire meaningful conversations in planning for the end of one’s life.

I have had the privilege of witnessing the beginnings of some very personal conversations between hospice patients and their families. I had personal talks with my mom and my uncle during their home care and hospice experiences. I sat with my husband and his mother when they spoke about hospice care (when we traveled to Arizona for what would be our last visit with her). In all of these conversations, though, I believe there may have been things left unsaid. Perhaps we spoke peripherally about the disease and focused only on cures and possibilities of treatment. Maybe we could only muster small talk on superficial topics like the weather or last night’s sporting event. Regardless of our intent when we started talking, we likely created conspiracies of silence.

A conspiracy of silence can occur when someone we love is diagnosed with a terminal illness or is in the late stages of a chronic illness (i.e., dying). The silence may arise for several reasons:

We don’t want to talk about death because we think death will occur if we mention the word.
We don’t want to “give up” or “lose hope”.
We don’t want the patient (our friend, our spouse, our child, etc.) to “give up” or “lose hope”.
We are uncomfortable with death.
We believe we must only focus on hope and cure (to encourage the patient; to bolster ourselves).
We are afraid of [fill in the blank].

And so, we don’t talk about the diagnosis in concrete terms (“You have cancer.” “I am dying.”). We choose to ignore the physical changes that are obviously apparent. We fail to acknowledge that we are each in need of meaningful conversation. We don’t give voice to things which left unsaid will be regretted. We don’t reminisce over shared memories. We don’t apologize, ask for forgiveness, or forgive. We don’t say “thank you” or “I’m so glad we are friends” or “Life won’t be the same without you.”

All of these things we don’t do create this conspiracy of silence that isolates the patient to face their reality alone: they are dying and there’s no one to talk to about their feelings and fears, about their life’s meaning and impact, about how much they love and have been loved by family and friends.

Yes, it can be difficult to approach someone who is dying, especially someone we love.

Yes, it can be challenging to start a candid discussion that acknowledges a cure may not be forthcoming.

Yes, it is heartbreaking to recognize that death may be closer than anyone wants to believe.

But, how much more difficult or heartbreaking must it be, as the person dying, to have no one acknowledge that fact: You are dying.

Consider your responses to these questions the next time someone you love receives a terminal diagnosis:

Would you want people to tell you how much you have meant to them?
Would it be difficult to continue pretending that you will be cured, when you know in your heart that no cure will come?
Would you want someone to give you the chance to express whatever you’re thinking and feeling before you can no longer do so?
Would you want to say “I love you” or “I’m sorry” or “I’m proud of you” before you close your eyes for the last time?

Caring Choices can help break the conspiracy of silence (or prevent it from happening). It’s never too early to talk with your loved ones – but it will eventually be too late.