Study explores women’s experiences, perceptions of shared decision-making for breast cancer treatment

Most women want to be involved in shared decision-making with oncologists when faced with treatment decisions for breast cancer, a new study from Leeds Beckett University has found.

However, while most women in the study valued a ‘two-way interaction’ and wanted to participate in decision-making with their oncologist, many felt that they couldn’t, believing that the ‘doctor knows best’ and making the active decision to let their oncologist decide for them.

The study, ‘Shared decision-making – rhetoric and reality: Women’s experiences and perceptions of adjuvant treatment decision-making for breast cancer’, was led by Dr Neda Mahmoodi, Senior Lecturer in Psychology in the School of Social Sciences at Leeds Beckett University and Chartered Psychologist, and has been published in the latest edition of the Journal of Health Psychology. It was completed in collaboration with Dr Sally Sargeant, Associate Dean in Higher Degree Research at Bond University, Australia.

Shared decision-making (SDM) has been suggested as the preferred approach for doctor-patient treatment decision-making in breast cancer when it comes to adjuvant (rather than surgical) treatments. Such adjuvant treatments include chemotherapy, radiotherapy, and hormone therapy.

Dr Mahmoodi explained: “Over the past 40 years, we have been moving towards a more patient-centred healthcare system, with a cultural shift towards a more ethical, shared model of decision-making where patients are fully informed participants in their treatment decisions.

“Adjuvant treatment decision-making can be difficult due to the combination of options available and the varying risks of relapse; however the practice of SDM has shown to improve breast cancer patients’ quality of life and satisfaction with treatment.”

The study aimed to explore women’s lived experiences and perceptions of SDM for adjuvant treatment in breast cancer, finding out how they conceptualise SDM and to what extent they perceive decision-making as truly being shared.

Semi-structured interviews were carried out with 20 adult women who had undergone adjuvant treatment following breast cancer surgery in an NHS hospital outpatient unit.

The women were not given a definition of SDM and were asked to describe their own experiences and what SDM meant to them personally. They were asked about the quantity and quality of information received about treatment options and their level of involvement in the decision-making process. They were also asked about their relationship with the oncologists.

Dr Mahmoodi found that, in contrast to previous studies, all of the women in the study illustrated an ‘active’ role: either as an active collaborator with their oncologist or actively choosing to take on a passive role in which they disengaged from the process of SDM.

Dr Mahmoodi said: “Most of the women who displayed an ‘active-collaborative’ role wanted to be informed and were keen to discuss their treatment options and share their opinions. They actively chose to participate in decision-making, and preferred to make their treatment decision in collaboration with the oncologist through the process of SDM.

“Other women actively made the choice to remain ‘passive’ in decision-making and showed little interest in participating in SDM – an ‘active-passive’ participatory role. For some women, increased treatment knowledge was regarded as an emotional burden, adding further fear and anxiety, and they preferred to situate the oncologist as the decision-maker.

“This supports the ‘paternalistic’ model of decision-making, and suggests that while a ‘collaborative’ approach to decision-making is popular and may be desirable, it is by no means universally held by all women with breast cancer. The implications for practice drawn from this study are that, even in today’s patient-centred health care climate, it cannot be assumed that all women with breast cancer want to participate in the adjuvant treatment decisions of their breast cancer care.

“Until further research is conducted and more is known about breast cancer patients’ motivations regarding SDM, oncologists should be sensitive to individual patients’ role preferences, and to assess the extent to which they desire to be involved in SDM. Oncologists may need training to better conceive patients’ preferences and information needs, and patient-centred communication skills might be useful to meet this task.”

The majority of women showed good understanding of SDM, and identified two characteristics associated with the process: ‘two-way interaction’ and ‘information acquisition’. However, Dr Mahmoodi noted a discrepancy between these reported characteristics and the women’s accounts: “In describing a situation where the oncologist identifies and explains information and the patient queries this and shares their concerns, there is no indication that the women also get to explain or suggest, or that the oncologist asks or queries. What is perceived as a mutual, two-way or equal process, constituting towards an encounter of SDM, appears in reality to be a less balanced and far from constructed as a symmetrical process.

“In this clinical context, should the ultimate goal for SDM in breast cancer care be equality? If so, who determines what constitutes a shared or mutual decision-making process? In circumstances where women have no choice, should the oncologists have more say, or should women be supported and empowered in their ability to use the information acquired to contribute to the decision?

“Our findings draw attention to some of the questions and dilemmas that appear to exist in the process of SDM for adjuvant treatment in breast cancer. To better understand these issues and the mechanics of SDM during adjuvant treatment consultations, it is recommended for future research to explore the objective conversations and interactions between doctor-patient for SDM.”

Some of the women’s accounts brought insight into the roles and positions that women and oncologists take during SDM. Dr Mahmoodi said: “Many held the view that the oncologist, owing to their status, role and professional knowledge and expertise, is the authoritative decision-maker and that they, as the non-specialist patient, are a spectator of care. This created an imbalance in doctor-patient power-relations which created a barrier to SDM, allowing some women to feel detached from it.

“The concept of SDM is designed to empower patients to become more involved in their healthcare. However, the findings from this study suggest that SDM for adjuvant treatment in breast cancer does not match this ideology. Inequality and power imbalance within SDM was shown to be a result of the objective discrepancy in medical expertise and roles between the doctor and patient. This finding adds an important dimension to theoretical constructions of SDM for breast cancer, as there currently appears to be a misalignment between the goals of oncologists and the rhetoric regarding women’s empowerment during adjuvant treatment decision-making.”

Additionally, the women in the study all referred to the oncologists as male, with no mention of female oncologists. Dr Mahmoodi added: “It would therefore be of further interest to qualitatively explore the impact of power differentials in gender on doctor-patient relationship and SDM for breast cancer. Until more research is done on the power dynamics within SDM, the challenge remains to promote changes in attitude and self-efficacy in women and for oncologists to be encouraged to empower women within SDM. Professional education in communication skills and training interventions are recommended to encourage oncologists to empower women within SDM.”