Our appointment is at 2:00 on Tuesday afternoon. It’s our first visit. My name is Mary Ann and I am your Palliative Care Nurse. You recently met with your oncologist who gave you terrible news: you have cancer.
You’re probably wondering what we’re going to talk about. You are probably wondering how much I know about you and your cancer. Do I know a tumor was recently detected in your left lung and has spread to your bones and liver? Do I know a biopsy was just performed? Do I know how scared and frozen you are with this news?
I know you felt fine, and now you have a life expectancy of one or two years, maybe more. It’s surely the worst news you’ve ever been told. Next year is your 20th wedding anniversary, and your two teenage children don’t even know you are sick. It’s a lot to take in.
I want to help. I want to discuss your diagnosis, what it means to you, and options for treatment. I want to give you a clear map of what life might look like over the next months. I want you to know I will fight along with you to maneuver through this awfulness. I want to answer all of your questions.
But one of my biggest challenges is that I don’t know what you want to know about your prognosis. Despite all the exciting stories about the progress against cancer you’ve heard, there is no cure for most types of cancer once they have spread to other body parts.
How much of this do you really want to know?
I have many of the facts at my fingertips: the likelihood if you will be alive in two, five or 10 years, probabilities if chemotherapy will work or not and how long before you will start to feel “normal.” I will put information in the context of your particular situation. And, I will emphasize this may not apply to you as an individual, because you are unique.
Oh, did you NOT want to hear numbers?
I can speak in generalities if you prefer. I can use phrases such as “likely to be effective” or “most of the time.” I can say, “Some people” or “live for years.” Or months. If that’s what you’d like.
But one thing for sure: I will not be one of those clinicians who don’t talk about it.
You know what I mean – one of “those” doctors or nurses who never talk to their patients about likely outcomes, or life expectancy, and don’t prepare you for the inevitable.
I do not want you to tell me, “I didn’t have time to plan.” Or have your spouse say, “You never warned me.”
I don’t want to dash your hopes either. I’ll focus on positives, best-case scenarios. I’ll tell stories about some of my superstar patients, the poster children for cancer survival, the ones who ignored the statistics and have lived to brag about it.
The balance, between hope and honesty, remains an uneasy truce in Palliative medicine. I want you to believe and trust me. I will earn your trust by speaking the truth, though not necessarily all of it.
The inescapable fact is that a tragedy is unfolding and I’m the bearer and reminder of this fact. A life will be cut down prematurely, young children will be left without one of their parents, and a spouse will be left on his or her own. It’s unfair and I can’t stop it. I wish I had more to offer and yet, my sadness probably doesn’t help you.
So please tell me. How much do you want to know?
Very poignant. God bless you and your patients and co-workers.
Mary Ann, This is a very honest description of what we face in our work.
But not all oncology doctors avoid the truth. Some of us “tell the truth” and do not avoid it.
Yet, your question of “how much do they really want to know” is always on my mind.
This post is brilliantly written.
Thank you.
Thanks for all the good work you do as well and for enduring the struggles
My experience is most patients do NOT want to know the “facts” until the end of their disease process. Hope is a key ingredient in the therapeutic process. I do not give false hope nor do I diminish their hopes as well.
Interesting concept though to ask what they want to know. I usually start with what do you already know.