Kathy Kortes-Miller has generously provided the first chapter of her book “Talking about death won’t kill you” for us to post here! Have a read – we think you’ll agree it’s a stunning resource. If you are interested, Kathy is speaking about her book in our webinar on November 7, 2023. Registration info is at the bottom of the page.
“Chapter One: Talking About Death Won’t Kill You”
by Dr. Kathy Kortes-Miller
I remember clearly the very first day of my second shot at a PhD program. I sat in a circle with my fellow new students. It felt a bit like kindergarten, but it was exciting nonetheless. There we were, all of us eager to divulge our plans for research and how we hoped to make a difference in the world. One by one, we shared our ideas and passions and talked about what we wanted to study and why. Our peers responded enthusiastically, nodding their heads, asking questions and making suggestions for further reading, other scholars and researchers to explore. It felt like a supportive, collaborative space.
When it was my turn, I leaned forward into this great group of people and said, “I want to study death education.”
There was silence in the room. Crickets.
Finally, after what felt like an uncomfortably long pause, one of the professors — a seemingly kind and gentle soul — spoke up. “Ahhh,” he said. “Deaf education. So, you want to work with the hearing-impaired?”
“Uh, no, not really,” I replied, trying to push down a sense of dread and panic. “I’m thinking death . . . with a ‘th.’ ”
“As in dying, dead, death,” I stammered.
That’s when it occurred to me that maybe we’re all a bit hard of hearing when it comes to talking about the end of life.
This reception to my research idea was a bit disheartening. Here I was, proposing to focus exhaustively for the next five or more years on a subject that no one wanted to talk about. I might have considered finding a new topic, of giving up on death. But I knew I couldn’t. That’s because I’d already had the experience of being shut down when I’d tried to talk about dying. And I was determined not to let it happen again. The previous year, precisely 12 days before I was to start that same Ph.D. program, I was diagnosed with cancer. I was 37, a mother of two active children, a wife and an educator, and I had a malignant tumour, 10 centimetres long, in my colon. Instead of beginning my studies, I spent a year in treatment, putting on hold not only the Ph.D. but most aspects of my life as I recovered from my surgery and learned how to navigate what they call “the new normal.”
After I was diagnosed, I was referred to a very well-respected surgeon, considered one of the best in her field in Canada. We met on the day I was supposed to begin my first Ph.D. course. I wanted to tell this surgeon that I was scared. I wanted to tell her I was afraid of dying and leaving my children without their mother. I wanted to tell her what I really should have been doing that day instead and how heartbroken — and, frankly, pissed off — I was to be in her office rather than at school!
But I didn’t get the chance to say any of those things. ‘‘If you’re going to get cancer, this is the kind to get,’’ the surgeon told me matter-of-factly. I was a bit confused: I had just told her that my aunt had died of the same disease when she was only a few years older than I. Still, I managed to get up the guts to say, “I’m really scared I’m going to die, and there are some things I want you to know.”
She shut me down. “Don’t talk like that,” she said. “You are not going to die.”
And, you know, she was right. Thank God, she was right. I haven’t died yet! I owe that surgeon a debt of gratitude for her role in saving my life. Still, though, I wished then, as I wished throughout my treatment, and as I wish now, that someone — one of the multitude of health-care providers I encountered throughout my time as a cancer patient — would have talked with me about the “death elephant” in the room. I could have died. My aunt did. Many others have. I’d supported some of them. I needed someone to hear me out, to let me take ownership of my living until I died.
That’s what I want for all of us: to feel like we have a sense of control, to feel heard and to feel safe to talk about dying and death in the midst of our life and living. I want us to have a better death education.
Changing our approach to death requires a shift not only in our own attitudes but also in our medical establishment. Death is inevitable; it is rarely a medical “failure.” But our medical system is trained to “fix” things. That’s great when what ails you is fixable, but not everything is. As palliative care physician and author Dr. Ira Byock writes, “Our health-care system is well-honed to fight disease, but poorly designed to meet the basic needs of seriously ill and dying patients and their families. We can do both. We must.” We need to find space in our medical and health-care systems to allow natural death. We cannot continue to abandon people when medicine can’t cure them, to tell them “there’s nothing more we can do.”
Because we can do lots to prepare for dying. And it starts with talking about it. It extends to creating communities that step up in a compassionate way when we need them. I think we’re ready: the Canadian Hospice Palliative Care Association reported in 2014 that nearly three-quarters of Canadians are beginning to think about the end of life.
Perhaps I am selfish, but now, when as I teach, I imagine the students in my courses as one day being charged with caring for me at the end of my life. I try to instill in them a desire to connect with people, separate from their diseases or conditions. I challenge them to recognize that learning with their heart is a part of their education that needs to be nurtured and developed every bit as much as their clinical skills and theoretical knowledge. I encourage them to think about how they will want to be cared for when they are dying.
I know that talking about death isn’t easy: it is sad and scary, and — for many — it’s a taboo topic. I’ve had to do it as a healthcare provider, fumbling through conversations as I learned on the job. More recently, I have had to do it as a patient, a friend, a wife, a daughter and a mother. But for me, it is essential. We need to bring death out into the open, witness it, talk about it, learn about it and recognize that dying matters because it is an inevitable part of our lives. And in so doing, we can be more prepared, make better decisions about the kind of care we want and ultimately improve the dying experience for ourselves and those we love. I now know that when I am dying, I want to be cared for by people who do not avoid the elephant in the room — the reality of death. I need those closest to me to believe that dying matters.
So, I bet today isn’t a good day for you to die. Hopefully tomorrow won’t be, either. But maybe today is a good day for you to start talking about death. Let’s take death out of the closet and give ourselves — and those we love — a gift and make space in our living for our dying.
You can purchase Kathy’s book here or through your preferred book vendor.