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Charlotte Grinberg ~

Here's what they should have told you: "We found cancer in your lymph nodes, your liver, your lungs and your brain. It explains your weight loss, your difficulty breathing and your loss of appetite. This wasn't just your depression, like you thought. It started in your lungs, and now it's everywhere. This cancer has been growing for quite some time. You cannot, even with the strongest medications and the longest surgeries, make this cancer disappear. It is too powerful. It is here to stay."

They should have said, "We wish we had better news, but it looks very serious. Still, we're here to care for you. We will not let you feel alone. Imagine the place you want to spend the last hours, days, months of your life. Which people do you want to be surrounded by? What do you want to read or listen to? What foods and smells bring you the most joy? We want you to go to this place. Eat as many macaroons as you like, burn your favorite candle, hold your two daughters close."

They should have told you: "This is hard news. We cannot tell you exactly when you will die. But we will be there to make your pain more bearable, your breathing more comfortable. Yes, you should read your book of prayers. Yes, you can walk your dog along the beach. Say and hear your last apologies. Give and receive your last kisses. We are so sorry--we know that this is not what you wanted or expected. No one expects it. But we'll be there to make your fears a little less overwhelming. We'll be there the day your heart stops beating--to close your eyes, to make sure you receive the respect and care that we all deserve."

I wish that this is what they told you. But I know it's not. I know because you started chemotherapy the same week they finally made the diagnosis. They placed a port; you went for treatment twice a week for five months. You lost your hair--your beautiful blonde hair that everyone in the family had envied. You went by yourself to get a wig; you went by yourself to your appointments. You didn't want us to see you weak. You thought that it would all be temporary.

You told us that the cancer would disappear, maybe in time for my wedding day. I wanted so badly for you to be there. Amid all of our family drama, I always wanted to sit next to you at family dinners. You were the one I shared my secrets with. In return, you gave the best relationship advice. You treated me like a daughter, calling the three of us your "ding, dang and dong."

You went to the radiation lab and the operating room, accumulating more and more scars across your chest. You continued to lose so much weight that we started to see all your bones. No matter how much pain you were in, you didn't want to talk about these trips to the hospital. You said that it would all be better soon.

You kept smoking packs of cigarettes--throwing the butts out of the window when the nurses weren't looking. You didn't want to make amends with your sister--my mom--who'd caused you so much pain over the last few decades. You didn't talk to your daughters about your drinking; about how they'd spent their childhood hiding the wine bottles from you before you returned home from work. You didn't want to confront your parents for dictating that you make a career in the hotel industry instead of following your dream of becoming an actress.

This is what you told us: "Everything is going to be fine. That's what the doctors said." But then, in my first year of medical school, a few months after your diagnosis, I learned about lung cancer. I began to understand that the chances were that you'd die soon. I read in my lecture notes: "The five-year survival rate for those diagnosed with stage IV lung cancer is less than 10 percent." I finally realized that the chemotherapy was never going to cure you. I realized that the treatment was palliative--a term that you had never used and perhaps had never even heard.

I wrote you a long letter of love, gratitude and goodbyes. I told you that I wanted to have no regrets. You wrote back one line: "I'll see you this summer when you visit."

But you died in the spring, before the hydrangeas bloomed, getting ready to travel to the hospital for another treatment.

The phone call shocked everyone in the family--everyone but me.

"How could she no longer be alive? She was getting better. The tumors were shrinking. She was getting the right medications! She was supposed to be okay." I listened silently to their disbelief.

Your parents are angry--angry that you died before them. That wasn't the plan. Your daughters are mad, too--mad that they never heard you say, "I'm sorry," so that they could respond, "It's okay. We love you."

And I'm furious at the doctors who kept you in the hospital, filled your veins with chemotherapy, shot your body with radiation, cut into your trachea to create a temporary breathing tube when you were hospitalized for the last time. Why didn't they tell you the truth?

Or if they did, why didn't you listen?


About the author:

Charlotte Grinberg is a writer and a resident physician in internal medicine at Harvard's Mount Auburn Hospital in Cambridge, MA. She has a particular interest in end-of-life care. Her work has appeared in JAMA, Annals of Internal Medicine and Health Affairs, and she is the author of the French ethnographic book Nos enfants sont notre richesse: maternité et identité nationale en Guyane Française (Connaissances et Savoirs, 2015). She started narrative writing while majoring in medical anthropology and global health at Princeton University. "The practice of writing continues to help me understand the complex medical experiences of my patients and family members."

Story editor:

Diane Guernsey

Comments   

# Kara Beasley 2019-04-09 10:38
When I diagnose a terminal brain tumor I always ask “what does the end of your life look like to you”. The answer to that question guided treatment. I then ask “what is your favorite food?”. I take out my script pad and write a prescription for as much of that blueberry pie or pizza as they can eat. Gentle honesty is the greatest gift we as physicians can give to those we cannot save. It is out of respect and compassion that these words need to be spoken.
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# Cordon Bittner 2019-03-30 15:11
Beautiful
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# Yehudit RN 2019-03-30 13:39
Wow! You describe a situation that occurs too often--medical personnel holdi g back information about a terminal condition for some reason of their own, and then in one short sentence turn the whole story inside out. Wonderfully written.
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# Mimi 2019-03-30 13:16
All I can say is “WOW!” Thank you for that. Brougght tears.
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# Pris Campbell 2019-03-30 05:38
This piece is something every health care professional should read. People need to know the truth. You said it so well.
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# Leangelo 2019-03-29 20:27
Extremely powerful. Thank you for sharing.
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# Lucy 2019-03-29 20:13
Wow.
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# Dagmar Friedman 2019-03-29 19:52
an important piece. So hard to get terminally ill people to share their thoughts about living and then dying when the medical team doesn't share honestly and compassionately bad news.
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# Jef Gamblee 2019-03-29 19:07
Wow. Powerful. Thank you.
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# Hilton Koppe 2019-03-29 17:55
Thank you so much Charlotte for your wonderful writing. Yours is one of the best pieces I have read on Pulse, and I have read many many good pieces. It reminded me of Raymond Chandler’s poem “What the doctor said”. Have you read that? Perhaps your aunt would have been better served had her doctors been similar to Raymond Chandler’s.
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# Roberta Beary 2019-03-29 18:28
Yes, a fine piece by Charlotte Grinberg and a fine poem by Raymond Carver, master storyteller and poet.
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