It’s My Death is involved in the "Death with Dignity" or patient self-directed end-of-life movement for the primary purpose of reshaping how we approach dying and end-of-life conversations. Loads of folks across the country are making inroads into the ‘difficulty’ of end-of-life conversations and preparation, yet it typically remains quite unsettling for most when coming face to face with someone who carries a “terminal” diagnosis.
I often hear variations of this reinforcement, “It’s not easy talking about death or making preparations for it.”
I beg to differ. Talking about it is easy. And so is making preparations. Being willing to do that is the real challenge. Making it personal is the most difficult of all. And I can tell you this with certainty: it is far easier to talk about it when you aren’t also actively doing it.
When we say “talking about death is not easy,” we simply sidestep that death belongs to us in a very personal way. In order to make any headway, we must literally lay claim to our mortality.
Try that on for a moment:
“I am not willing to talk about my death or make preparations for it.”
It has a very different ring, doesn’t it?
The fact is, each of us is “terminal” and talking about that in general terms without any ownership creates a fundamental problem: the illusion that death is not a personal matter.
Dying is the most intimate experience of a human life—leaving the world as we know it, naked, weak, and more vulnerable than ever. For anyone to imagine they know what is in the best interest for every dying person is a kind of self-assured ignorance and arrogance that frankly leaves me pretty astonished.
The only thing I can do to maintain sanity when I hear comments to that effect is to imagine how people might say the things they say in a more personal way with a little ownership:
“We are meant to die naturally,” becomes, “I want to die without any intervention.”
“Our death is up to God,” becomes, “My death isn’t up to me.”
“Doctors are to do no harm,” becomes, “I want my doctor to do everything possible.”
“It’s a slippery slope,” becomes, “I don’t know what will happen when I’m dying.”
It’s my heartfelt belief that any dying person should have access to everything they want and need when dying. That should be an open, on-going and very public conversation.
We should be willing to speak of and hear the truth about dying and how that is sometimes excruciatingly difficult. How else will we create unconditionally compassionate, full-service end-of-life care in the United States?
Eva Thompson and Holly Best are two Mainers who want to help change the conversation (and the law) in Maine.
Their stories are personal, raw, and incredibly honest.
That’s what it takes to legitimately talk about dying.