6 themes described how women with early-stage breast cancer perceived and experienced treatment decision making
What are the processes or stages of treatment decision making (TDM) as perceived by women with early-stage breast cancer?
Teaching hospital and regional cancer centre in Ontario, Canada.
Purposive sample of 21 women (age range 34–79 y), who had early-stage breast cancer, were referred for consultation about surgical or postsurgical systemic therapy options, and could speak and understand English.
Treatment consultations with surgeons or medical oncologists were videotaped. In semistructured interviews 2 weeks after the treatment decision was made, women described how they made the decision and then watched tapes of their initial consultation. Tapes were stopped at predetermined times or spontaneously by participants when TDM appeared to be taking place, and women were asked to describe their thoughts at that time. Interviews were recorded and transcribed. Data were analysed thematically.
6 themes described women’s perceptions or experiences of TDM. (1) Before oncology consultations, women sought information about treatment options and resources from informal (family and friends) and formal (healthcare providers) networks. There was no systematic process for obtaining high-quality information before consultations. One woman commented, “When you get breast cancer and your friends find out, they have friends that have done it [had treatment]…It’s just become a friend through a friend thing.” Many women and family members initially searched the internet but stopped because they found the information frightening. (2) Most women identified preferred and non-preferred treatment options before consultations, including preferences for type of surgery and whether or not to have chemotherapy. Preferences did not change after the consultations unless new information was given. (3) Discussions with surgeons and family physicians before the medical oncology consultations were important for TDM and prepared women for chemotherapy discussions: “It [decision-making] probably started right back when my family doctor talked…I think he was the one; he softened the blow for me.” During surgical follow-up, women formed opinions about the need for further treatment. Some women thought that they should have received more information earlier. (4) Many women considered different chemotherapy options both during and after medical oncology consultations. Most women used numerical information about risk of cancer recurrence and chemotherapy side effects to decide on type of chemotherapy or whether to use chemotherapy. Women usually made decisions several days after consultations, after discussions with their support networks. One woman at high risk of recurrence stated: “…what’s going to be my benefit to doing the more aggressive treatment…if its 3% or less, I’m not going to bother, because 3%, what is that?” Some women wanted medical oncologists to make decisions for them. (5) Women valued physicians’ treatment recommendations; these were sometimes inferred from the order in which treatment options were presented. Most women found that physicians’ recommendations gave them confidence in thinking about treatment. (6) Some women did not expect to be offered a role in TDM during medical oncology consultations: “Now that was a surprise…I had really thought that I would be told what the problem was and what we were going to do about it.”
6 themes described how women with early-stage breast cancer perceived and experienced treatment decision making.
O’Brien MA, Whelan TJ, Charles C, et al. Women’s perceptions of their treatment decision-making about breast cancer treatment. Patient Educ Couns 2008;73:431–6.
Source of funding Canadian Breast Cancer Foundation, Ontario Chapter; Breast Cancer Research Program, US Department of Defense.
Taken together, the 6 themes identified by O’Brien et al illustrate the complex relational nature of TDM, emphasise how decision making occurs over time, and invite questions about how autonomy is understood. ”Relational” refers not only to relationships among people but also to how wider contexts and people shape one another. The themes clearly show how women’s decisions were made in light of interactions with family, “friends of friends,” and physicians; availability of information; assumptions about decision making; and power dynamics. Importantly, this study challenges the increasingly popular assumption that patients come to clinical encounters well-prepared by information gleaned from the internet, suggesting that guided access to information might be helpful in advance of clinical consultations. Many women wanted more information given earlier and valued cues about the next steps in the decision-making process (eg, from surgeons about medical oncology consultations). The study by O’Brien et al underscores that autonomy is not about individuals making independent decisions but is relational,1 2 with individuals making decisions in a complex network of relationships, power dynamics, and contexts. Furthermore, it shows that respecting autonomy extends beyond treatment decisions to preferences about who makes decisions and how.
O’Brien et al address limitations of earlier studies that focused on either medical consultations or factors outside of consultations, and by using video, they help to address recall limitations. The study points to the need for longitudinal research to better understand the time sequencing of decision making as a basis for better support.