GRAND ROUNDS: THE PARENT’S SIDE
A GLIMPSE OF BEHAVIOR
I gave the following Grand Rounds speech to doctors and medical students at Newark Beth Israel Medical Center in April 2016. My husband Ed suggested I post it on my blog Unexpectedlives.com. I agreed.
I thought about what I would say in the days before the speech and A Medical Problem that Won’t Go Away, http://suzannbgoldstein.com/blog/?p=1622, posted in February, began to stand out. Please read it if you haven’t already since I believe there is a problem that must be addressed in the doctor-patient relationship.
I received many comments which pointed to a separation or perhaps a distance that forms on the part of some doctors that has no place in medicine. Over time, I imagine, it will diminish. I hope.
***Please let me hear your comments. What are your experiences? Good? Bad? I want to hear them all.
THE PARENT’S SIDE OF THE STORY
Good morning, everyone. My name is Suzann Goldstein.
And this morning, I’m going to tell you something that I’m sure you already know although it bears repeating: it is a shock—a horrific shock—to hear that your child has cancer.
I remember each moment of it vividly. The surgeon said, “I’m sorry to tell you that Valerie has bone cancer.” I heard him but didn’t look at him. I didn’t look at my wonderful husband Ed either. The room turned silent. Nobody said anything; nothing I heard anyway. And finally, after spending a few moments looking down at the doctor’s loafers—I remember thinking how small his feet were; I also noticed how shiny those loafers were (what was I thinking?)—I got up, my whole body shaking and said, “I need to go to Valerie.” My 3-year-old was in recovery and all I wanted was to hold her and never let her go.
So, my first point in this presentation is not medical. It is emotional. Purely emotional. And I believe that you, as doctors, understand that: you understand it as if the child were your own.
We were fortunate in that our oncologist was an excellent doctor but, unfortunate, in that he was an imperfect one. And that relates to his affect. Ed and I were uncomfortable with him. There was a sense of detachment surrounding him that we couldn’t crack. He wouldn’t or couldn’t let down his guard. This was before my work in medical sociology so I didn’t know, then, that doctors were also human beings!
My nephew Bill once said, “Aunt Suzann always has a story for us,” and so, of course, I have a very short story to tell you. It goes like this.
It was Valerie’s last overnight in the hospital after her two-year checkup to make sure that her Ewing’s sarcoma was gone, and we were going home for good. So we thought. We were waiting by the elevator and Valerie was happily skipping around on the hospital floor—it was a cockeyed skip because the radiation she had received had damaged her right leg and caused a limp.
We didn’t see her oncologist but he was standing at the nurse’s station down the hall. When he saw our daughter he shouted out, “Hey, Val, aren’t you going to come over here and give me a hug and kiss goodbye?”
All three of us were taken aback, astonished, really, at his sudden turn of such affectionate behavior but Valerie—she was five at the time—turned and ran to him for that hug. We knew, then, that she had forgiven him for all those terrible injections and the vomiting and the awful taste in her mouth and the inability to move for a few days. And so, we forgave him too. He had shown us his real self.
It was such a little thing but it meant a lot to us. And that taught Ed and me something; doctors must be kind, warm-hearted and compassionate. We, as parents, are asking a lot, I know that, but we’re in a bad situation and we need help: all the help that we can muster.
The second point is from a medical perspective. Parents think, is this the correct diagnosis? Is our child getting the best care possible? The best treatment, the best specialists, the best hospital? We have to feel comfortable with our child’s doctor, with the medications, the surgeries, and everything that goes along with such a horrid illness.
By the way, few resources were available to us then but, you know, it was a long time ago. Our daughter was diagnosed with Ewing’s sarcoma in 1970. There was no Valerie Fund www.thevaleriefund.org, no Mom2Mom http://www.mom2mom.us.com/Peer Support Helpline Program or any other place to go to for help. We, as parents, at that time, were invisible.
Today, parents are quite noticeable—maybe, at times, more than you doctors would like. But I believe that it’s a good thing. At least, it’ll keep you on your toes, right?
Point three: Will the doctor listen? It is, in reality, points 1, 2 and 3. Ed had been to the supermarket for me—Valerie was very ill then and as he was standing in line waiting to check out, he saw a headline about a Japanese medication that was supposed to cure Ewing’s sarcoma. We just knew there was something to it.
Ed bought the newspaper home and when we went into New York the next day for Valerie’s appointment, he showed it to the oncologist. We wanted that medication for our daughter. We were desperate. The oncologist looked at us (he probably thought we were a little crazy because, after all, it was just a junk tabloid), and once more, showed us his human side. He took the newspaper—this was, of course, before computers, the Internet, cell phones—and said he would investigate the treatment and get back to us.
In all honesty, I don’t remember exactly what he said, but it must have been something along the lines of “It doesn’t seem to be in trial yet.” He could have said, after he looked into it—because I believe he did look into it—that the drug didn’t exist, that it was a phony, a come-on—but he didn’t. He did not dismiss us out-of-hand. He listened to us, to what we needed: for the moment anyway.
And that was important to us but it’s really not enough. We needed more then and parents need more now.
My point here is that the doctor and his or her team must do everything, not only for the child but for the family as a whole, to make their lives a little more livable. Because the family loves and cares for the child and the child is part of that family.
When looking at the points I just made, I recognize, once again, the emotional needs of everyone involved. They cannot be forgotten. We, patients and family alike, want the real you, the one who answers people with the truth in words they understand. We want the you who treats patients like family. And I believe that it’s possible: to be sensitive to us and to let us know that you care. I’m being redundant now but that’s how essential it is.
As some of you know, we lost Valerie in January 1976—she was nine years old—and we established THE VALERIE FUND one month later, in February—and now, THE VALERIE FUND is 40 years old this past February 2016, with seven Valerie Fund Children’s Centers treating children with cancer and blood disorders as well as Camp Happy Times, an overnight week-long summer camp for children with cancer. We’ve come a long, long way.
I have another short story for you. Our first VALERIE FUND Center was at Overlook Hospital. I was walking down the corridor of our only Center at the time and a patient’s mother saw me, pulled me into an examining room and introduced me to her young bald-headed son; he was sitting on the floor and playing with a toy truck. She took both my hands in hers and said to me that she was sorry we didn’t have a Valerie Fund Center when our daughter was struck with cancer.
And her words overwhelmed me. She was right. We didn’t have anything like a Valerie Fund Center in New Jersey when Valerie was sick. But I sure am glad that we do now! As I said, we’ve come a long, long way.
Yet I’m afraid that’s not far enough.
There are still some doctors who are aloof, cold, uncommunicative, without emotion.
Doctors are human, I know that, but there is a responsibility that all doctors have … and it’s written in the Hippocratic oath that you all take.
So, what does the modern Hippocratic oath say? I’ll quote part of it. “I will remember that there is art to medicine as well as science, and that warmth, sympathy and understanding (italics mine) may outweigh the surgeon’s knife or the chemist’s drug.”
I hope you’ll forgive me for preaching to the choir but, in fact, I just can’t let it go, so with your help, we’ll do it all. We’ll take care of the patient as well as the family and, together, we’ll eliminate all the cancers and all the blood disorders and all those other awful illnesses that exist today and, in the process, we’ll ease the stresses they produce.
Thank you for listening to me.