How Much Do Your Really Want to Know About Your Prognosis?

If you have been recently diagnosed with cancer, now might be a good time to ask yourself how much information do you want your physician to disclose about your condition. The truth about one’s diagnosis and prognosis can be either uplifting or it can usher in a harsh, new reality. For some patients, a future, once meticulously planned, can change with the utterance of a few words by their doctor.

Despite the risks of reducing hope and injuring our psyches, the majority of patients want to know the truth, albeit to varying degrees of completeness. Here is a sampling from the hundreds of research studies examining this issue:

·         “Our findings suggest that most people do want honest information, even if the news is bad. We found that 27 of 27 enrolled patients initially reported wanting to know all the available information about their cancer, prognosis, treatment benefits, and treatment side effects.”[i]

·         “Four relatively early studies reported that almost all patients (96–98%) wanted to be told whether their illness was cancer. Ten studies showed that many patients (57–95%) wished to receive all the information available, both good and bad). Four studies reported that most patients wanted to know about their chance of a cure (91–97%) and how effective the treatment of their cancer was (79–98%). However, four studies suggested that a lower percentage of patients (27–61%) wished to discuss their life expectancy.”[ii]

·         “Most oncology patients also want to know their prognosis and have rated prognostic information as the most important element of communication—more important than diagnostic disclosure or treatment information.”[iii]

·         “Younger patients, female patients and more highly educated patients consistently desired to receive as much detailed information as possible and to receive emotional support. Younger and more highly educated patients also wanted to participate in decisions regarding their treatment.”[iv]

Regardless of what the research tells us, the bottom line is that there is no right or wrong when it comes to seeking or avoiding information about your prognosis. Despite what many research studies reveal, there are still many patients who are quite content to remain comfortably uninformed about certain stark realities. They may claim that want to know everything, but may not be ready to receive the information when they do.[v]

Dana B. knew what information she did and did not want to receive from her physician:

I did want to know how the staging happened, but I did not want to know my likelihood of five-year survival. Different people handle things in different ways. For me, if someone told me that I had a 30 percent chance of living for five years, my hope just went down. Whereas if I go into it blindly—not knowing the percentage—then I can make it in my mind whatever I want it to be. I’m naturally pessimistic, so to maintain optimism, I need to not go there with the numbers.[vi]

So, once again, before you ask your physician for more information about your diagnosis and prognosis, ask yourself, “How much do I want to know about my disease?” The Medscape website suggests cancer patients consider how they might respond to the following questions from their physician:

·         “Many patients want to know the prognosis. Is this true for you?

·         Some people might not want to know how the cancer will affect survival, but wouldn’t mind someone telling their families. What do you prefer?

·         What are you expecting to happen?

·         How specific do you want me to be?” [vii]

 

THIS TOPIC IS COVERED IN MORE DETAIL IN AFTER YOU HEAR IT'S CANCER: A GUIDE TO NAVIGATING THE DIFFICULT JOURNEY AHEAD.  I would encourage you to read the book and share it with loved ones who are also on the journey. 

 

[i] Thomas J. Smith et al., “A Pilot Trial of Decision Aids to Give Truthful Prognostic and Treatment Information to Chemotherapy Patients with Advanced Cancer,” Journal of Supportive Oncology 9, no. 2 (2011): 83, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3589716/pdf/nihms-447553.pdf.

[ii] Maiko Fujimori and Yosuke Uchitomi, “Preferences of Cancer Patients regarding Communication of Bad News: A Systematic Literature Review,” Japan Journal of Clinical Oncology 39, no. 4 (February 3, 2009): 213, http://jjco.oxfordjournals.org/content/39/4/201.full.pdf.

[iii] Bethany J. Russell and Alicia M. Ward, “Deciding What Information Is Necessary: Do Patients with Advanced Cancer Want to Know All the Details?” Cancer Management and Research, 3, (2011): 194.

[iv] Fujimori and Uchitomi, “Preferences of Cancer Patients,” 213.

[v] L. Furber et al., “Investigating Communication in Cancer Consultations: What Can Be Learned from Doctor and Patient Accounts of their Experience?,” European Journal of Cancer Care 22 (2013): 660.

[vi] Dana Bart, in discussion with the author, May 14, 2014, Overland Park, Kansas.

[vii] Medscape website, http://www.medscape.com/.