Understanding Prognosis: Diving out of the Dark

Summary

Andrew, a Seattle resident with non-Hodgkin lymphoma, wanted more information about his prognosis—what his diagnosis and treatment might mean for his likely outcome. Although he felt his treatment was appropriate, he often found it difficult to get the details he wanted about how his situation related to survival statistics.

A physician explains that prognosis conversations can be difficult for doctors. Some may withhold or soften information because they worry it will overwhelm patients. But limiting information can leave people unprepared, and communication is an important part of care.

Andrew found that another specialist, Dr. Bock, took time to answer his questions in detail. Seeking another perspective helped him get information without necessarily changing his primary oncologist.

Practical lessons

• Be direct about what you want to know. Tell your doctor which aspects of your prognosis you want discussed, such as what the diagnosis may mean for you or how statistics apply to your case.
• Ask questions and share what is on your mind. You can say, “Here’s what I’d like to hear from you. Is this something you can share with me?”
• Let your doctor know how much detail you can handle. Clinicians may hold back because they assume information will be too difficult. Patients can clarify that they want an honest, fuller discussion.
• Seek help if the conversation is not working. Ask for support finding a clinician who communicates in a way that suits you, or consult another specialist. Getting another perspective does not necessarily mean changing doctors.
• Share information with family in an age-appropriate way. Andrew keeps explanations simple for his young son and worried daughter while focusing on taking his medication and hoping for recovery.

Speakers and sources

• Andrew Taylor — Patient discussing his diagnosis, his search for prognosis information, and his family.
• Physician/oncologist — Discusses the difficulty and importance of communicating prognosis. Dr. Bock is mentioned as a doctor who answered Andrew’s questions in detail.
• National Cancer Institute (NCI) — Identified in the closing credit, along with the U.S. Department of Health and Human Services and the National Institutes of Health.