Rethinking the knowledge of terminal illness: Is it a quality of life issue?
James B. Rickert
Bloomington, Indiana, United States
I found myself sitting again with an oncologist waiting to hear the results of treatment. I felt calmer this time because my friend, who was being evaluated for recurrent ovarian cancer, had requested that I come, but I still had a pit in my stomach. We had driven down together from our town; I knew from personal experience that on these drives it is much better to come with a friend—it’s then possible to mask the real purpose of the excursion, at least for a little while. We compared tastes in music, talked about weekend plans, stopped for coffee, that sort of thing.
When I say friend, I should really say acquaintance. I had met Sarah only a few weeks before over coffee. She had come to understand her prognosis and wanted to talk with someone about how she could cope, and a doctor friend had thought of me. She is a woman my age with recurrent ovarian cancer. She is a single mom with two high school students and is tall, effervescent, and quick to smile. She would become serious when we talked about her illness, but would brighten immediately afterward. During the past year, she had undergone surgery and intensive chemotherapy, but a recurrence had emerged on follow-up imaging within just a few months of treatment, and an important blood test, CA 125, had risen sharply. She had agreed to treatment with alternative chemotherapy and was now seeing her doctor to discuss the results of further testing. After introductions, he got right to the point, “The CT scan shows us that the tumors are still growing. I know this is really bad news; I’m sorry. We still have a few options to treat you.”
Sarah is an intelligent, intense, and tough woman, but she just looked out the window, so I asked him to describe her options. None were at all appealing, and the unspoken truth hovering about the room and damaging Sarah was that she now knew that she was terminally ill. Sarah was smart enough to know that she had only a short time left to live.
In medical school they teach us to think and treat patients in a strictly linear fashion. Diagnose a patient with proper testing, treat appropriately, and then retest as needed. A good doctor never confuses his patients by discussing hypothetical test results; they could cause confusion or needless anxiety. A good doctor always orders the test first, obtains the result, tells the patient his or her prognosis, and then discusses with the patient the proper alternative courses of action. As a doctor, I knew this method of treatment was right and had applied it endlessly myself, but as a patient, I knew it could also be quite wrong.
I, too, had been given the news that I was terminally ill. At the age of 42, happily married, enjoying my work, and with children ages 4 to 10, I had undergone standard chemotherapy for non-Hodgkins lymphoma. When the illness recurred, I underwent high-dose chemotherapy followed by a stem cell transplant using my own stem cells. When this failed, I was forced into a transplant using my brother’s stem cells. Each treatment was more dangerous than that preceding it, and together, they brought with them a real, cumulative life-threatening risk, but what choice did I have? Still, I did rather well through the allograft transplant, but then the time came for my first follow-up scans.
The radiologists read the CTs as showing a recurrence. When my doctor told me this as gently as she could, my mind crumpled. No other long-term treatment options were reasonable for me. All my golden years were spent; I was terminally ill. I came home and sat under my favorite tree and wept in the afternoon heat. The magnitude of my loss crushed me like a stone; not only would I never grow old with my wife, I would never hold grandchildren, never see any of my children get married, never hear “Pomp and Circumstance” at high school or college graduations, nor watch my daughter grow into a teenager. So now as the doctor turned to leave us alone, I had no need to guess the depths to which Sarah’s thoughts were receding. She avoided my glance, but I looked at her with a terrible sorrow, and another, deeper emotion welled up inside me. I forced myself to fight back a feeling of bitter anger at the medical system that had led Sarah unwittingly to this moment in time.
I clearly understood the benefits Sarah’s caregivers had received from this interaction; tests had been performed, bills would be generated, money would change hands. Sarah’s doctor had learned something new and obtained closure on his treatment of this patient. But what about Sarah? She had been offered the apple, eaten of it, and been given the knowledge that she would soon die. In exchange, she was also offered treatments that would make her sick and yield little in terms of extending her life. Her doctor had known before testing her that if the CT came back positive, these would be his recommendations and their effectiveness; Sarah had not. Why did he make her partake of the apple before he would discuss any of this with her? There are, of course, benefits to knowing one’s prognosis, however grim it may be, but gaining this knowledge should be the prerogative of the patient. A long conversation should have ensued between Sarah and her doctor before this CT scan was ever ordered.
Driving back to our homes, we did not listen to any more music or stop again for coffee. I did not try to make conversation. I knew that there was nothing that I could say. I held Sarah’s hand as she cried, and I thought again that although the knowledge of terminal illness is not currently regarded as a quality of life issue, it should be. Doctors should slow the wheels of treatment and ask their patients if a few or several extra months of life, as the case may be, are worth the risk of living for that time with the burden of the knowledge that they are terminally ill. Let the afflicted have a chance to think about it. Patients like Sarah and I would thank them.
The scan that renames me terminal
My tongue caught between my teeth, I hear the mechanism
Other prospectors, under pitiless skies or snow, have hunted for silver
JAMES B. RICKERT, MD, is a practicing orthopedist in Bloomington, Indiana. He founded The Society for Patient Centered Orthopedics, a patient advocacy group. As both a doctor and a patient, he has come to recognize that we should not just rethink the knowledge of terminal illness, but also the manner in which testing for terminal illnesses can affect a patient. His prose and poetry seek to explore the impersonal nature of modern medicine.
Highlighted in Frontispiece Spring 2011 – Volume 3, Issue 2
Spring 2011 | Sections | End of Life