During my two years of clinical clerkships, I met a patient I won't soon forget.
She had refractory lymphoma. She had received all the standard therapies, none of which was effective. She was admitted to participate in a clinical trial for a new drug, and I was put in charge of her. The “new drug” stimulated my intellectual curiosity. I read articles related to the drug one after another, and every day I visited her room to see whether any side effects had occurred. I spent most of the day staring at her laboratory data. Shortly after she began to take the drug, her general condition improved, and detectable lymph nodes got obviously smaller and softer. I was so excited, “Oh, I'm facing medical advancements!” I enjoyed chatting with her. We talked about family, hobbies, and many other things. And I said, “I hope you will feel much better soon, and be released from hospital.” “I hope so, too,” she replied with a gentle smile.
She was discharged from the hospital at the same time that I finished my hematology rotation. After that, every time she was admitted to receive the drug, I went to see her, and she welcomed me warmly. However, the clinical trial had been discontinued, because the lymphoma recurred in spite of the treatment. She tried some other new medications, but none was effective. Finally, she ended up receiving best supportive care at home.
One day, I heard that her condition suddenly changed, and she was urgently hospitalized. I rushed to her room. She was usually quiet—I was always the one who started the conversation. But that day, as soon as I entered room, she looked into my eyes and said, “Doctor … I can't breathe well. I gave it everything I had. I think it's enough. So… I want to put a period to my life by myself.” Though her voice leaking out of an oxygen mask was faint, I felt her strong will from it. I was thunderstruck at the suddenness of the event, and I didn't know how to reply to her. The words stuck in my throat. She also told me that she was glad to have met me, but all I could do was to hold back my tears.
I visited her room day after day. Since she could not move at all out of bed, I took some photos of blazing sunset to show her, which I saw from a rooftop of the hospital. But, to tell the truth, I was at a loss about what to say to her. I talked about my worries with a friend of mine. She recommended a book about death and dying and told me that she was going to bring it to me to borrow.
The following Monday, after I finished my practical training at another hospital, I hurried back to the hospital where the patient was waiting. When I was changing into my white coat in the locker room, one of my friends came and told me that my patient had passed away two days earlier. I felt overwhelmed by feelings of helplessness. I still didn't know what I should have said to her. “Did I do anything good for her? Wasn't that just for my self-satisfaction?” I asked myself. On that day, my friend lent me the book. Its title was, How to Talk to a Patient Who Is Dying.
How to talk to a patient who is dying. We are rarely taught about it in classes. To find an answer, I rotated at PCU (Palliative Care Unit), and I read books that gave tips for conversation with patients who have a terminal illness. Still, it can be hard to know exactly what to say. We have no first-hand experience to know how they are feeling. In the case of my patient, new medicines were presented as possible cures, one after another, and that got her hopes up before dashing them again and again. She was probably worn out by this roller coaster experience. It is true that there are remarkable recent advances in medicine, but the loss of life is inescapable. Naturally, we work hard to save every patient we treat, but we still face this challenge. All human are mortal. So how can we talk to our dying patients? Each of us must each find the answer to this question for ourselves.
Bohui Qian
University of Tsukuba, Japan
Back to the April 2019 issue of ACP IMpact