By Stanley Winokur, MD
Dr. Winokur is a retired oncologist who lives with his family in Singer Island, Florida. He is the author of Grandfathered In: A Memoir, a book about finding balance between having a career in medicine and having a family. He has contributed several other posts to TDWI; his posts originally appeared in ASCO Post, a publication of the American Society of Clinical Oncology.
When I started practicing oncology in 1973, I was frequently asked by my patients, “What’s my prognosis, what can I expect?” At first, I was reluctant to tell the patient very much, especially when I knew the prognosis wasn’t good. I wanted to spare the patient the details of the inevitable outcome of his cancer, so I downplayed the truth. Some may call it sugarcoating the information. I just wanted to do anything I could to protect my patient from learning that not only didn’t we have a cure for his cancer, we didn’t even have a treatment to extend his life. The best we could do was to maybe improve the quality of his life for as long as possible.
Now, 37 years later, not much has changed. Today, most patients with cancer never receive information from their physicians about their prognosis or even imminent death. According to a recent article in The Journal of the American Medical Association, not telling patients their prognosis leads to a worse quality of life for both patients and their caregivers.
Why are physicians so reluctant to give their patients truthful answers regarding their prognosis? When asked, most oncologists say that they don’t want to take away their patients’ hope of recovery. Others say they are afraid that if they tell them the truth, the patients will stop treatment. Some worry that their patients will leave and seek the advice of another physician.
Evidence to the Contrary
Recently, I read a study showing that hope is maintained when patients with advanced cancer are given truthful prognostic and treatment information, even when the news is bad. The study, performed at the VCU Massey Cancer Center, surveyed 27 patients with advanced cancers, including breast, lung, colon, and prostate malignancies, about their feelings regarding their cancer and their future. The researchers used the Herth Hope Index to assess the impact of giving the study participants accurate information about their prognosis.1
After reading the results of this study, I wondered why the practice of not being totally honest with our patients still exists, especially when other studies also support the Massey findings. Rather than fearing that our patients may give up and stop treatment if they knew the truth, I wondered if the real reason we avoid telling our patients the truth was because, as physicians, we can’t admit to ourselves that we can’t cure our patients or even extend their lives.
I know it was difficult for me to face that reality. Patients and their family members seek us out to solve their problem, and yet we are limited in our knowledge of how to do that. After several years in practice, I finally found the balance between telling my patients the truth about their prognosis and maintaining their hope. Finding that balance is what I have come to believe is the “art of medicine.”
Patients want us to be truthful, compassionate, and clear about their prognosis and want to know that we will be there with them every step of the way. Rather than taking away hope, being honest with our patients provides them with the necessary information to help them redefine hope, even if cure is not possible. ■
Note added by Dov Michaeli: I suspect that there is an additional factor in physicians’ difficulty in telling the truth. As medical students and residents we were not trained in how to deal with end-of-life situations. We deal with the limits of medical knowledge and with death quite successfully -in the abstract. We know all the statistics about survival, but we feel uncomfortable to talk about imminent Death, just like anybody else. The grim ripper image sends shivers down most people’s spines. With our rapidly aging population, our medical schools need to address this problem.
1. Smith TJ, Dow LA, Virago E, et al: Giving honest information to patients with advanced cancer maintains hope. Oncology (Williston Park) 24:521-525, 2010.