Title: Patient and surgeon decision-making in risk-reducing mastectomy: an ethical and empirical analysis
Funder: Economic and Social Research Council

Abstract: Breast cancer is one of the most common cancers in the UK, with 38,279 new cases (38,004 female) reported during 2006. Familial and genetic profiling techniques permit the estimation of both risk faced by individuals and the risk-reduction prospects of specific interventions. Risk Reducing Mastectomy (RRM) is the removal of healthy breast tissue to reduce the future risk of breast cancer. Contralateral RRM (CRRM) is the removal of tissue in the opposite breast in patients who have experienced cancer and BRRM involves to both breasts of women at high risk of cancer who have usually not personally experienced cancer. Our ability to predict and surgically reduce risk also creates a dilemma. Breast surgery can have adverse medical and psychological effects which need to be balanced against risk reduction benefits. Our pilot research indicates that potential CRRM patients do not consider the risks of surgery or future cancer in their decision-making. Instead, their preferences were determined by the degree to which they were distressed by the possibility of cancer. Surgeons appeared to show empathy to this distress and generally assented to CRRM requests. On the surface, we are concerned that the primary role of patient distress, and minor role of objective risk, in these decisions may not be in patients best interests or even ethical. However, the meaning of these findings is open to interpretation. Evidence from the risk perception literature suggests that distress does not necessarily inhibit sound decision-making. Indeed, women and surgeons use the intensity and duration of current distress to judge how distressed women will be if they do not have surgery. Thus, conducting surgery to reduce patient distress might be considered to be reasoned and ethical. From surgeons' perspectives, it is unclear whether they assist patients to form opinions about surgery or whether they question decisions that they feel are poorly made. Indeed, surgeons should encourage patients to determine the course of their treatment, and the ethical grounds on which surgeons can attempt to influence or over-rule patient choices are far from clear. These issues are not unique to breast cancer. The recent development of methods to reduce risk using invasive procedures means that these dilemmas are becoming common in a range of medical areas and are likely to grow in complexity and number. To clarify and help to resolve these issues, we intend to further examine processes of individual and joint decision-making by women and their surgeons to better understand how the key issues as viewed by each and how these views influence the decision outcome. Using a series of qualitative interviews with patients and their surgeons, we will examine how patients form preferences both for and against RRM surgery, and how surgeons deal with these preferences. To develop a better understanding of what might be appropriate actions in these situations, we will interpret our findings in the light of contemporary thought in bioethics and decision-making. In return, we expect that the conclusions that we reach from this area of research will assist in the development of these broader literatures in bioethics and decision-making.


Research activity codes: 7.1 INDIVIDUAL CARE NEEDS;7.3 MANAGEMENT AND DECISION MAKING
Health categories: CANCER AND NEOPLASMS