Is "Active Surveillance" an Acceptable Alternative?: A Qualitative Study of Couples' Decision Making about Early-Stage, Localized Prostate Cancer

The objective of our study was to describe decision making by men and their partners regarding active surveillance (AS) or treatment for early-stage, localized prostate cancer. Fifteen couples were recruited from a cancer center multispecialty clinic, which gave full information about all options, including AS. Data were collected via individual, semi-structured telephone interviews. Most patients were white, non-Hispanic, had private insurance, had completed at least some college, and were aged 49-72 years. Ten chose AS. All partners were female, and couples reported strong marital satisfaction and cohesion. All couples described similar sequences of a highly emotional initial reaction and desire to be rid of the cancer, information seeking, and decision making. The choice of AS was built on a nuanced evaluation of the man's condition in which the couple differentiated prostate cancer from other cancers and early stage from later stages, wanted to avoid/delay side effects, and trusted the AS protocol to identify negative changes in time for successful treatment. Treated couples continued to want immediate treatment to remove the cancer. We concluded that having a partner's support for AS may help a man feel more comfortable with choosing and adhering to AS. Using decision aids that address both a man's and his partner's concerns regarding AS may increase its acceptability. Our research shows that some patients want to and do involve their partners in the decision-making process. Ethical issues are related to the tension between desire for partner involvement and the importance of the patient as autonomous decision-maker. The extended period of decision making, particularly for AS, is also an ethical issue that requires additional support for patients and couples in the making of fully informed choices that includes AS.

Narrative inquiry in bioethics. 2016 [Epub]

Chi L Le, Stephanie L McFall, Theresa L Byrd, Robert J Volk, Scott B Cantor, Deborah A Kuban, Patricia Dolan Mullen