A Patient's Perspective. Oncologist
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he OTncologist® Schwartz Center Rounds Breaking Bad News: A Patient’s Perspective LAUREN DIAS, BRUCE A. CHABNER, THOMAS J. LYNCH, JR., RICHARD T. PENSON Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA Key Words. Oncology · Support · Psychosocial · Communication · Care LEARNING OBJECTIVES After completing this course, the reader will be able to: 1. Explain the importance of compassionate care and clear communication in oncology. 2. Recognize the advantages and limitations of good communication. 3. Communicate better with patients and families who face life-threatening illness. CME Access and take the CME test online and receive one hour of AMA PRA category 1 credit at CME.TheOncologist.com ABSTRACT Shortly before his death in 1995, Kenneth B. Schwartz, focuses on issues of communication between patients and a cancer patient at Massachusetts General Hospital their caregivers, one of the most difficult aspects of which (MGH), founded The Kenneth B. Schwartz Center at is breaking bad news. The invited patient, a woman who MGH. The Schwartz Center is a nonprofit organization had been living with a low-grade cancer for many years, dedicated to supporting and advancing compassionate spoke about her experiences both as a person living with health care delivery that provides hope to the patient, sup- cancer and as the daughter of a patient diagnosed with port to caregivers, and encourages the healing process. cancer. Her father’s suicide, precipitated by being told his The Center sponsors the Schwartz Center Rounds, a diagnosis, puts the horror of receiving bad news into stark monthly multidisciplinary forum where caregivers reflect relief. She provides a fascinating account of how she on important psychosocial issues faced by patients, their proactively adjusted to her diagnosis, and fought for opti- families, and their caregivers, and gain insight and support mal quality of life. This article discusses issues of support, from fellow staff members. abandonment, and how hope is conveyed, and reviews the Clinicians in the field of oncology are unavoidably literature that informs good clinical practice in breaking forced to break bad news. The Schwartz Center Rounds bad news. The Oncologist 2003;8:587-596 PRESENTATION Patient: Let me take you back to the start. I was com- Details of the patient’s history have been changed to pletely well. I was toodling along with two little kids protect her anonymity. and a husband. He is a physician. I was teaching school Correspondence: Richard T. Penson, MRCP, M.D., Instructor in Medicine, Hematology-Oncology, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson@part- ners.org Received October 20, 2003; accepted for publication October 20, 2003. ©AlphaMed Press 1083- 7159/2003/$12.00/0 The Oncologist 2003;8:587-596 www.TheOncologist.com Dias, Chabner, Lynch et al. 588 and one day I found a football-sized mass in my with the medical care, but because I was unhappy with abdomen. It frightened me, but because it was so huge, I the communication with the doctors. After one complica- felt it had to be benign. After all, something that big tion, the surgeon did not speak with me for the whole could not possibly be a cancer, and the word cancer just admission. He would come into my room each day to never even entered my mind. I was too young, I thought. check my chart and examine me, but he never sat down Anyway, I went into surgery not having a clue. The doc- to say, “This is what I found. This is what happened. This tors really did not prepare me for it except to say I had a is what is going to happen. This is what we’re going to mass. I remember exactly what he said. I woke up from do.” I don’t think he could deal with a bad result and I surgery to hear my surgeon say, “I have good news and really was a bad result. So I left that hospital. Another bad news. I didn’t have to remove any of your organs, doctor made me feel like things were just hopeless. Now but (pause) you do have cancer.” It just blew me away. I have found somebody who lifts my spirits and who is During that year I had four surgeries and was in and always going to tell me he’s got something to pull out of out of the hospital. I his hat for me. I am realis- had a lot of time to During that year I had four tic and I know that the hat think about what I is getting a little bit shal- was going to do with surgeries and was in and out of low, but the communica- the rest of my life, tion is there and I am part which is something the hospital. I had a lot of time of a team, and that’s very you say when you important. Patients really have cancer. “Now to think about what I was going want to feel that they’re what am I going to part of a team. do? I don’t know to do with the rest of my life, which I didn’t have my can- how long I am going cer in isolation. I was mar- to live.” No one was is something you say when ried, was raising children, sure of the prognosis, and I had two parents who and I said to myself, you have cancer. were very distressed about “What I do know is my cancer. They were that I don’t like what I am doing now. I do not want to from an older generation where they couldn’t talk teach school anymore. I want to do something health about cancer. I took it upon myself to educate them. I care related because I don’t even know where any of my remember one time we sat down in my living room organs are and I need to know more about my body if I and I said, “Okay now, on the count of five we are all am going to interact with my doctors intelligently.” going to say the word ‘cancer’.” They literally could While some people who interacted with me were not say it. They lived far away and tended to only see really truly wonderful, others were horrendous, just hor- me during times when I was ill. Never when I was rendous. I thought I could make a difference. I stopped well. There were a lot of times when I was ill. And teaching and went into the medical field, which is actually when I was ill, I was really ill. What they apparently one of the best things that could have happened to me. were learning from my experience was not that you Subsequently, I have had 13 abdominal surgeries, 4 can survive cancer, but that it could be really horrible. months of chemotherapy, and 6 weeks of radiation ther- My father was 86 years old, a very healthy man, apy. I have a tumor right now. I have not been tumor-free very robust, very active, didn’t look a day over 70, in years. I have always had some tumor that is being never had a health problem, and was uncomfortable in watched. The tumor in my abdomen that we’re watching a hospital setting. He was just so scared for me, and now will have to be operated on, or I will get experimen- would say, “I will never suffer like that. I think what tal therapy. I am having a computerized tomography (CT) you’re going through is just torture,” and at times, it scan next Tuesday, and so I am sort of on edge. I am very really was. Some of those times were really horrible well aware of the size of the tumor because I feel it. So, I and there was no hiding it from him. He would say, am very realistic about where I am at and about how “This isn’t fair, people shouldn’t suffer. Somehow you things might go for me, and that’s why I need to act. have the strength to do it, but I could never do that. If I Through my care, I have been in three different hos- had to suffer at the end of my life, I would be active.” pitals. I think my medical care has always been excellent. My parents were becoming more frail and my mother I left the two previous ones, not because I was unhappy suffered from depression. My father then had some rectal 589 Breaking Bad News bleeding. He dismissed it for ages but finally he went to and my father couldn’t deal with the possibility of it for the doctor. The doctor sent him for a barium enema that an hour. I was so upset that he couldn’t turn to me and showed an irregularity in his colon and suggested that he have me or his doctor say, “Let’s talk about this. Ask probably should have a colonoscopy. I said, “Irregularity me your questions.” My mother was also completely in is not a word that a radiologist uses. What does that the dark. My father hadn’t verbalized any of his con- mean? Call him back and ask him for a copy of the cern to her. But, 2 days before he committed suicide, he report.” He said, “Oh, the doctor doesn’t sound alarmed. said to my mother, “Well, I am having the colonoscopy It doesn’t sound like it’s anything major.