During our almost-three-year journey through the Wilds of Cancer, my daughter Marika and I never spoke about death or dying. To do so would have been to abandon all hope of ever being free of cancer. It’s like we made some sort of pact to pretend that everything would turn out all right. Our discussions focused only on coordinating the here-and-now. This way, we could stride always forward from setbacks and disappointing news.
So towards the end, as the palliative care team took over, hinting about unplugging the life support system, I made them whisper and would not mention aloud that Marika was not going to live. At that point, I was too crushed by the thought of losing her. I couldn’t utter the D-words. Death. Dying. Dead. They pulsed in my head as I tried to convince myself of the terrible new reality. Marika, mostly unconscious by then, only heard encouragement from me as she lay there, “You’re doing fine, keep it up.” I’m pretty sure she already knew she would not survive. Holding back the truth has haunted me ever since.
Eight years later, a good friend of mine is in the end stages of her cancer. In the strange circumstances of life, I have been granted an opportunity, a second chance, to do a better job of supporting a loved one through the process of dying. I’m still wondering why it is so difficult to talk about the tough stuff with the ones we care about. All the very difficult, very human things one needs to address at the end of a loved one’s life — like apologizing, forgiving, thanking, acknowledging love and appreciation, and saying goodbye — are easy to ignore.
Then came the day my friend announced she was stopping treatment and starting hospice care. It was time to step up beyond my comfort zone, to acknowledge her dying.
Now Death is turning into a third friend in our company. In my mind I picture Death as having the face of my daughter, so it isn’t as scary and unapproachable as it used to be. Most days she (Death) sits peacefully between me and my friend. Sometimes she hugs us close. Other times, like when I’m being less than thoughtful, she (Death) blatantly slams our heads together. I’m getting used to Death’s gaze waxing and waning with my friend’s energy.
“What will happen when you die?” I ask my friend, “I’m going to miss you. You know?”
How can we make death and dying easier to talk about with our loved ones?
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I once took a course in this from Elisabeth Kubler-Ross at the Omega Institute. She was the doctor who revolutionized the way doctors talk to their patients about death. Instead of informing the family but trying to keep the bad news from the patient, all doctors now receive training in this very difficult and harrowing discipline. Kubler-Ross was an interne at a hospital in the US (she is Swiss) and it bothered her that the doctors all agreed that they shouldn’t tell the patients if they were dying. Elisabeth noticed that her terminal patients seemed more relaxed after a certain cleaning woman had been in their rooms. Elisabeth hid in a closet to hear what was actually said during these encounters and heard the cleaning woman say, “It’s pretty bad, isn’t it?” or “How you doin’, Honey?”, that kind of open-ended comment that creates an opening. The patients often said, “I can’t wait until this is over” or “I hope I won’t be around for Christmas”, stuff like that. So the patients knew they were dying but everyone official around them was denying it. As you say, this approach rules out true communication during the last stages, no heartfelt probing of issues, problems, things that need to come out in the open and to be resolved. And people always know if they are dying! Even children! Kubler-Ross used art therapy with patients and their drawings were very revealing, with kids drawing a lot of butterflies, so they were also used to start conversations about death and dying. In general the patients were very relieved to feel they could talk freely about their feelings, instead of having to cheer up others. By the way, the cleaning woman was given a new role: teaching doctors how to talk to dying patients! I don’t remember her name but she should get a prize for her contribution. She was comfortable with death, since she had lost many family members and friends in the African-American community, where people are more open about their feelings than fx my own community, uptight European-American. The reason I was interested in Kubler-Ross’ class was that my dad died in 1973 with no one talking to him about the fact that he was dying. How terribly lonely he must have been! I lived overseas then, but I wrote him a letter telling him that if he died before I returned, he would still be able to communicate with me. He did – but that’s another story!
I love this, Lucy. First of all, you are so lucky to have met and studied with Kubler-Ross. I don’t agree with a lot of her beliefs, but just that she addressed death and was not afraid to engage the dying to learn and share their experience makes me appreciate her. I also appreciate that cleaning woman in the hospital you mentioned, who approached dying persons openly and unafraid. Unfortunately I missed my opportunity to be open about death with my Marika. I just had no idea of how to talk about dying or how to be around a dying person. I don’t imagine I’ll ever get over that. It just complicates my grieving.