I have just finished reading pages 28 to 42 of Dr. Jerome Groopman’s book: The Anatomy of Hope, and felt I need to stop reading and write this piece to share with you what I have learnt. For more that a decade I met with many cancer patients. Inside me I felt all along that many or most oncologists often misled their patients to their treatments. Today after reading the story written by no less than one of the world’s leading oncologists and researchers, I now feel I was right all along. Let me relate what Dr. Groopman wrote about what happened sometime in 1978-1979.
The Actors in this Story
1. Patient: 52-year-old Frances Walker, an African-American with a teenage daughter, Sharon.
2. Main doctor: 50-plus-year-old, Dr. Richard Keyes at Russell Clinic, a town north of Los Angeles, California, USA.
3. Second doctor: Dr. Jerome Groopman, 27-year-old, up and coming doctor doing a fellowship in blood disease at the University of California, Los Angeles.
Frances had traces of blood in her stools during her yearly physical examination. A colonoscopy indicated a tumor in the lower bowel. She underwent a surgery to remove the tumor but the surgeon found that the cancer had spread to the lymph nodes and invaded the left lobe of her liver. Medically this was considered a Stage 4 metastatic colon cancer.
Frances and her daughter, Sharon, came to Dr. Richard Keyes’s clinic. They were greeted warmly by the doctor who proceeded to examine Frances’s operation wound. Everything seemed okay. They sat down to discuss follow-up treatment.
Richard: Frances, all traces of cancer were removed from your bowel and the surrounding lymph nodes. A few small spots of tumor were found on the left side of the liver. But we have chemotherapy to help take care of them.
Frances’s face showed great relief.
Richard: The chemotherapy I will give you is very active against those spots in the liver. I expect some side effects, like mouth sores, diarrhea and anemia, but you’ll be monitored closely. All of the side effects can be managed and will ultimately reverse. Any questions?
Frances thought for a moment and understood what needed to be done. Richard wrote into this patient’s file: “Patient and family understand the risks and benefits of the proposed therapy.”
Frances left the clinic.
Groopman to Richard: When I’m with the (patient), if direct questions come up, I should emphasize remission, correct?
Richard: Yes, I certainly wouldn’t look at Frances and say: “Madam, the cancer in your liver will kill you.” What’s the point of that? All it does is make the remaining time even more miserable. Or cause her to panic and refuse palliation. Richard continued further: Each doctor has his own style, his own way of doing things. Believe me, for patients in situations like this, too much information is overwhelming.
After the first shot of chemotherapy Frances had some nausea and dry heaves. But she seemed to be in good spirit despite the side effects. She said: “I’m a fighter.” Later, she suffered painful mouth ulcers and had to be hospitalized and put on drips. After that she had to be hospitalized again due to fevers and abdominal cramps and diarrhea.
Three months into chemotherapy
Richard to Frances: Look at that CAT scan. This is the liver … those are the deposits we are treating. They’re about half the size of what we started with.
Frances: Does that mean I am partly cured?
Richard: You are well on the way to a remission. Thank God. It’s going away.
Frances’s daughter, Sharon, closed her eyes and bowed her head in a silent prayer.
Time passed and it was January 1979
Dr. Groopman shook Frances’s hand and felt it trembled. France’s liver function tests showed elevated values as they had not been before. Dr. Richard Keyes examined her abdomen.
Richard: Your liver edge is tender and your blood tests are slightly abnormal. Sometimes the chemotherapy can inflame the liver as a side effect. You are due for a follow-up CAT scan in a week. Until then, I’ll give you a prescription for some pain medication. Don’t be reluctant to use it if you need to.
Frances left the clinic.
Richard to Groopman: You know, it really doesn’t make a difference clinically if it is the cancer and not the chemo. There’s little we can do about it. By telling Frances and Sharon now, we just add another few weeks of worry. This way they have something to cling to for a little longer. Richard looked at Groopman kindly and continued: You’re at the beginning of your career, Jerry … SUSTAINED IGNORANCE IS A FORM OF BLISS. May be she’ll be lucky and it will turn out to be a side effect from the drugs.
Two weeks later Groopman saw the report of Frances’s scan and wrote: “The liver metastasis had more than doubled in size, and new deposits had appeared in the spleen. The organs looked as though they had been riddled by large-caliber bullets, leaving gaping holes. The scan also showed the fluid was building up in the abdomen. I knew that patients like Frances rarely survived over a few months. I noticed a faint tinge of yellow in her eyes. It was jaundice, an indication that the cancer was blocking the liver’s excretion of bile. Her abdomen was so distended from the ascites that it pressed her navel outward like a bubble.”
Frances came into the clinic.
Groopman: How are you?
Frances: Very tired. I have no appetite. I have to force myself to eat, since the food doesn’t go down easily.
Groopman: We need to drain the ascites to relieve the pressure. You should feel better afterward.
Sharon: Then that means it’s spreading quickly, doesn’t it?
Frances: I have no energy. I felt for a while that something was wrong … But Dr. Keyes said it was from the chemotherapy treatments.
Sharon: I thought you and Dr. Keyes said that the chemotherapy could cure her.
Groopman: He didn’t — we didn’t — quiet say that. We said that there was a good chance of going into remission, which happened. Groopman then explained what remission meant and how it differed from cure.
Sharon: Why didn’t you tell us before?
Groopman: Colon cancer behaves this way. Shrinking for a while from the treatment then becoming resistant to it and growing again. I am sorry.
Groopman wrote: “The last time I saw the (patient) was in early March. Frances was unable to eat more than a few bites of solid food. If drinks were too cold or too hot, she regurgitated them. Each drainage of the ascites provided only a few days of relief before the fluid re-accumulated. Frances declined further chemotherapy after hearing my frank recitation of data on its chance of working.
Sharon: I guess he (Dr. Richard Keyes) didn’t think people like us are smart enough or strong enough to handle the truth.
Groopman: It wasn’t a question of smart enough. Dr. Keyes and I were trying to spare you the worry. Well, we were both wrong.
Frances died soon afterwards. Groopman wrote: “A sense of shame and guilt gripped me. Richard and I had failed the (patient). It has been a delusion to tell myself that what Richard had done and what I have embraced as his apprentice was for the best for them. Ignorance was not bliss, not when it mattered. By abandoning the truth, Richard and I had abandoned Frances, and through our deception we left Sharon alienated and bitter.”
Comments: It amazed me that the same story is been played over and over again by different doctors everywhere. It does not seem to matter if it is in Malaysia, Indonesia, Singapore or the United States.
Groopman felt ashamed and guilty. I wonder how many others felt the same way after having failed. How could they ever face their patients knowing that in “trying to do their best” they actually deceived or misled their patients?
Groopman was right when he wrote that the episode had left Sharon alienated and bitter. Who would not feel disappointed, cheated or deceived? In a decade of my own experiences, I have met patients and their family members who felt bitter and enraged at those doctors who had taken them for a ride. Many have lost their loved ones besides having to face a hefty medical debt to settle. For some who are poor, they resorted to selling their property — land or house. That was the bet that they took to “buy” the “misrepresented cure” which doctors told them was promising indeed. Patients fail to understand that there is “that much any oncologist” can do when faced with cancer.
All these years I have always maintained that patients must be told the truth or provided with enough and unbiased information to enable them to make a decision for themselves. There is no need for anyone to “play God” and try to be a hero. Groopman was right – he and Richard were wrong in trying to “protect” Frances by concealing the truth. Or by withholding the truth, were they trying to protect Richard’s “income”?
By writing this, I am not “anti-doctors”. I hope patients, their family members and even the doctors learn from what Dr. Groopman had written. I have great admiration and respect for this author, Dr. Jerome Groopman. From the early stage of his career, he had shown himself to be a man of integrity filled with love and compassion. I am proud of him and salute him for his righteousness and integrity. This is the kind of doctor that the world needs and patients should go to for help. Sadly, I am skeptical or not too sure of some oncologists. Patients or their family members told me that their doctors, more often than not, were “after my money not after my cancer.” These oncologists had no time for them or showed no compassion at all. When patients ask about the side effects of the chemo, the answer was often trivialized or downplayed: “Oh, it is nothing much — a bit of hair loss and nausea.” In actual fact, some patients went through “hell” while on chemotherapy without any assurance of a cure. If patients ask more questions, the answer was often: “Why ask so much. You doctor or I doctor.” There was an oncologist who said: “I am not cheap, if you don’t have the money go to other doctors. Otherwise, go home and sell your house and then come and see me.”
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