A discussion of communication of the diagnosis of cancer and the end of life to patients is not an easy one. Maybe 40 years ago it was common to withhold such information from patients, when doctors (and families) were more paternalistic, but those days have mostly disappeared. I can assure you that every patient, whether he or she wants to acknowledge it out loud, knows what is going on unless they are cognitively impaired. I cite two experiences.
The first is the common experience of families trying to hide the information from their loved one. I was called to see a man with pancreatic cancer. His sons and daughters were gathered outside his hospital door asking me not to tell him how bad it was—that he would not be able to handle it and so on and so forth. I walked into the room where he was propped up in bed. As soon as the door closed, the man calmly said to me, “Hi. Doc. How long have I got?”
I was raised by my aunt and uncle who moved to Miami Beach when I was in college (where else?). I visited them during mid-winter break during my second year of med school. One evening, my aunt took me aside and said, “Don’t tell Uncle Willie, but the doctor told me his heart is bad and he only has a few months to live.” A half-hour later, my uncle took me into the same room and told me, “Don’t tell Tante Erna but the doctor told me my heart is bad and I only have a few months to live.” I imagine they were both happy protecting and hiding the truth from each other until my uncle did pass away a few months later.
About 15 years ago, the main oncologist treating patients with pancreatic cancer at my institution left abruptly. I took over his clinic until a replacement was found, and so ended up treating patients with advanced pancreatic cancer on chemotherapy, some of whom were doing well. Inevitably, given the nature of the disease, each progressed and, as I informed them of this, several blamed me, thinking if my former colleague were still there it would not have occurred. Apparently, he had never informed them of their poor prognoses and the natural history of their disease. I recently was at a shul luncheon where a man at my table told me about his father with stage 4 pancreatic cancer, where the oncologist likewise never told the patient or family his prognosis—the father died four months after diagnosis. So this still goes on.
In my experience, almost all patients can handle the news, not happily of course, but after some shock and perhaps some tears; after a few days, they acclimate and deal with it. I can only recall a very few patients who really could not come to terms with it. And unless someone is cognitively impaired, they are always aware of the truth whether they are told or not. They are being brought to see a cancer doctor in a cancer clinic with the word “cancer” emblazoned everywhere. They may not want to know details, but they know the basics.
A study of 1,169 patients with stage 4 cancer published in the New England Journal of Medicine in 2012 found that 69% of patients with advanced lung cancer and 81% of patients with colorectal cancer thought that the chemotherapy they were receiving was potentially curative. This misunderstanding was worse among patients who were nonwhite or Hispanic. Counterintuitively, it was also worse among those who rated their communication with their physician most favorably.
Many oncologists are reluctant to convey accurate negative prognostic information. One reason is that they worry it will make patients feel hopeless or upset. However, a study by Holly Prigerson and colleagues, published in JAMA in 2008, included 332 patients within four months of death. Of these, 123 (37%) reported having end-of-life discussions with their oncologists. The study found no difference in depressive symptoms or worry between the two groups. Those who were informed did opt for less aggressive chemotherapy and earlier hospice referrals and generally reported better quality of life.
Oncologists are also concerned that patients will think less of them if they convey negative information. This concern actually has some merit as demonstrated in the New England Journal article cited above, where patients rated physicians most favorably when they misunderstood how poor their prognosis was. Most studies, however, suggest that honesty does not damage the longer-term relationship.
Another recent study by Prigerson sheds further light on this subject. She looked at 178 patients from nine cancer centers with stage 4 cancer who were estimated to have less than six months to live. Each had already progressed on the proven chemotherapy regimens for their cancers. Overall, 68 (38%) reported no discussions regarding their prognosis.
An understanding of one’s prognosis is essential both for treatment planning, for end-of-life planning, for dealing with one’s business and family life. Jacob’s deathbed scene at the end of Breishit always has seemed particularly moving to me in this light.
Alfred I. Neugut, MD, PhD, is a medical oncologist and cancer epidemiologist at Columbia University Irving Medical Center/New York Presbyterian and Mailman School of Public Health in New York.
This article is for educational purposes only and is not intended to be a substitute for professional medical advice, diagnosis, or treatment, and does not constitute medical or other professional advice. Always seek the advice of your qualified health provider with any questions you may have regarding a medical condition or treatment.
