I was working in the bone marrow transplant clinic of an internationally known cancer center. I was learning so much from working there, all of the various complications from having a bone marrow transplant to the long-term problems that can exist in a survivor. I also saw the hope in patient’s faces as they were being worked up for a possible transplant.
I was asked to go in and see a new patient who had been referred over from the leukemia clinic. She had acute myelogenous leukemia and had relapsed after her remission. Her sister had been found to be an eligible donor and the patient was being seen just prior to her being admitted for the transplant. We were going to go over the transplant process and what she could expect.
Gretchen came in with her mom for the appointment. As usual with patients who have gone through chemotherapy, Gretchen wore a bonnet on her head to cover her hairless scalp. She was 19 years old. She was tall, youthful looking and had a twinkle in her eye. Yet, I was to find out, she rarely spoke.
I introduced myself and explained to Gretchen that this appointment was for us to answer any and all questions she would have regarding her upcoming bone marrow transplant. After I answered the questions, then I informed her that the attending physician, Dr. Marcus would come in and go over the consent forms with her.
“So what questions do you have Gretchen?”
Gretchen who was sitting next to me at the clinic exam room table, looked over at me, then looked at her mom, then her eyes traveled down to her mom’s purse and stayed there for a few seconds, then she turned her head back to me. Yet she never said a word.
“What questions do you have, Gretchen?”
Again, Gretchen did the same thing, she looked at me, then at her mom, then at her mom’s purse, then back at me. Again she didn’t say anything, nor did her mom.
I asked a third time, “What are your questions?”
Gretchen just continued to look at me and then every so often look at her mother’s purse.
“Hmm, I thought to myself, she has to have some questions, I certainly would if I was looking at being admitted for a bone marrow transplant.” So once more I asked Gretchen whether she had any questions, but this time I looked her straight in the eyes and changed my phasing to, “Gretchen I’m not going anywhere, I’m not going to leave this exam room until all of your questions have been answered. So let’s start with your first one, what is it?”
Gretchen looked at her mother, down at her mom’s purse and pointed to the purse. Her mom lifted her purse, pulled out 2 sheets of paper and handed them to Gretchen.
Gretchen took the sheets, handed them to me and said, ‘here’s my questions.”
I opened the folded sheets, somewhat tattered and worn, and realized answering all of her questions was going to take a long while, . . . a long, long while. She had at least 30 questions written down on the two sheets of paper.
I looked over her list of questions and immediately realized that she had been carrying this list of questions around with her since she was first diagnosed with leukemia more than 18 months ago. She had just been adding questions to her list ever since, because she wasn’t comfortable with asking anyone. No one, including her physicians, nurses on the floor when she was hospitalized, no one had taken the time or even asked her whether she had any questions. What a shame.She had gone through a whole treatment program, gone into remission, and had now come out of it, was in need of a bone marrow transplant now to go back into remission from her leukemia and no one, absolutely no one had answered any of her questions. And yet she was willing to trust me with treasured, worn list of questions. I was honored by her willingness to open up to me about her fears over the unknown.
“Okay, Gretchen, we have a lot to go over. Let me go out and tell Dr. Marcus that I’m going to be with you for a while, so that he won’t think we’re lost in the system somewhere, and then I’ll be right back. After that I’ll go over each and every one of these questions, give you all of the answers you need, is that okay?”
Gretchen nodded her consent.
I came back into the exam room a few minutes later after letting Dr. Marcus know of the delay. I sat down on the rolling exam stool and started in with her first question.
As Gretchen and I went through each and every one of her questions and I answered them, she began to quietly cry. I handed her the Kleenex box nearby to dab her eyes. An hour and half later we were finally finished with her list of questions. By this time Gretchen and her mom were holding hands.
“Is that all of your questions, Gretchen?”
Gretchen nodded yes.
“Okay, well I’m going to go get Dr. Marcus so that he can go over your consent form and admission orders for tomorrow. He should be in here in a few minutes. I wish you the best.”
“Thank you,” she said.
As I thought back over the afternoon episode with Gretchen I realized something very important. Gretchen was probably like a lot of patients we see in medicine. We as providers get so busy and cram our clinic schedule so full that we don’t have the time, nor take the time, when it is needed to answer our patient’s questions. In so doing, we have done them a definite disservice. Patients are not comfortable enough to stop us and ask their questions. We as providers don’t give them permission to ask their questions because we don’t portray the body language necessary for the patients to know they are important, questions and all.
We as providers need to learn to communicate better, take the time to answer our patients questions, put our patients as ease, and help the patients to empower themselves to acquire better health for themselves and their family members.
We all need to work together.
I later learned that Gretchen came through her bone marrow transplant and went back into remission after receiving her sister’s bone marrow.