Introduction

Decision making about early prostate cancer is a complex, preference-sensitive choice involving many different options [1, 2]. Almost fifty percent of patients with prostate cancer find the decision difficult and distressing [3]. Upon diagnosis, most patients prefer to actively collaborate with their healthcare providers to make a decision [4]. However, a discrepancy often exists between patients’ actual and preferred decision making roles in cancer treatment [5, 6].

Besides healthcare providers, patients with prostate cancer also wish to involve their families and partners in the decision. In one study, all patients with prostate cancer preferred a collaborative decision role with their partners [7]. Family support helps patients with information-gathering, active decision-making and clarifying a patient’s quality-of-life preferences [8]. Family roles are especially relevant in the Malaysian context where family members have been reported to play active roles in various medication and surgical choices [9–11].

Given the good survival rates for prostate cancer and the importance of quality-of-life issues stemming from treatment side effects, shared informed decision making is increasingly advocated as the ideal model for prostate cancer treatment decisions [8]. Decision aids have been developed to facilitate shared decision making in prostate cancer; these have been shown to improve patient knowledge, reduced decisional distress and improved decisional satisfaction[12].

It is generally perceived that patients from non-Western, low-and middle-income countries experience lower levels of involvement in decision making and that paternalistic consultation styles are prevalent [13]. For example, a situational analysis in Malaysia reported that patients were not involved in decision making during clinical consultations [14]. However, patient involvement varies across Asia; a study by Lam et al reported that 73% of Chinese women reported having been offered a choice regarding breast cancer treatment [15]. Reasons for this variation are little understood; a systematic review on shared decision making in non-Western cultures found no studies describing barriers or facilitators to patient participation or physician attitudes toward patient involvement [13].

In Malaysia, prostate cancer incidence is low with a population age-adjusted incidence rate of 6.2 per 100,000, compared to the United States at 160 per 100,000 [16, 17]. Hence, the experience of the healthcare professionals and the resources available in guiding patients through the decision making process is limited in Malaysia compared to the Western world. Understanding how healthcare professionals from these settings view decision making roles will help to shed light on factors underlying discrepancies between actual and preferred roles. Therefore, this study aimed to explore the views of healthcare professionals (HCPs) on the roles of patients, families and HCPs in treatment decision making of early prostate cancer in Malaysia.

Methods

Data collection

In-depth interviews and focus groups were conducted with HCPs between December 2012 and March 2013. Four trained researchers (PYL, CJN, KLA, ATC) conducted the interviews using a semi structured topic guide, which was developed based on clinical experience, a conceptual framework (the Ottawa Decision Support Framework) and literature review (Table 1) [21]. The topic guide was used as a template to explore and probe further on issues that emerged during the sessions. The topic guide outline was adapted as results emerged from the data. An assistant took field notes on non-verbal cues and interview dynamics. Focus groups were conducted according to the HCPs’ practice background (three groups: private practitioners, senior consultants in public hospitals, urology residents in public hospitals) to capitalize on shared experiences and ensure homogeneity among the HCPs [22]. Individual in-depth interviews were conducted with policy maker and oncologists because they were unable to attend focus group sessions. Participants were assured of the anonymity and confidentiality of the interview before written consent for interview and audio-recording was obtained.

Download:

• PPT
  PowerPoint slide
• PNG
  larger image
• TIFF
  original image

Table 1. Topic guide for in depth interviews and focus group discussions.

https://doi.org/10.1371/journal.pone.0142812.t001

The HCPs were informed that the interview focused on patients who had been diagnosed with early prostate cancer. We used open-ended questions and only used prompts if key issues did not emerge spontaneously. The HCPs were asked about the roles of patients, families and HCPs in treatment decision making of patients who were diagnosed with early prostate cancer. Each interview lasted between 60 to 80 minutes. All interviews were audio recorded and transcribed verbatim.

Results

We conducted three focus group discussions and four in-depth interviews. A total of 20 HCPs from 14 institutions participated in the study comprising: private urologists (n = 4), government urologists (n = 6), urology residents (n = 6), government policy maker (n = 1) and oncologists (n = 3). There were 17 male and three female participants. The focus groups comprised urologists in private practice (n = 4), senior urologists from the public sector (n = 6) and urology residents (n = 6).

HCPs identified three parties that were involved in the decision making process: HCPs, patients and family. Two main themes emerged: HCPs’ preferences for their own decisional roles vis-à-vis the patient and their families, and HCPs’ perceptions of patients’ preferences vis-à-vis HCPs and their families.

Discussion

This study sheds light on HCPs’ preferred decisional roles and HCPs’ views on patients’ preferred roles in prostate cancer treatment.

Some of the HCPs in this study went against the grain of stereotypical Asian paternalism. Although literature tends to portray that paternalism is prevalent in Asian clinical consultations [24–26], including Malaysia [14, 27], this study identifies a context in which this is not necessarily always true; what is salient about the nature of prostate cancer treatment is the equipoise between treatment options. Indeed, paternalism may be reduced if more critical awareness of equipoise is developed for a broader variety of medical decisions.

Maintaining the stance of a guide required HCPs to adopt a number of strategies. One strategy was for HCPs to withhold their own opinion about which treatment they thought was best. However, studies in Chinese women with early breast cancer (a disease with similar treatment choices to early stage, localized prostate cancer) report that patients appreciate the recommendation of a surgeon as they lack the background information to make decisions; the doctor’s recommendation serves as a proxy for missing information [28]. Thus, even if HCPs do not share their opinions about which treatment they think is best, they should still share information in an unbiased manner [28]. One implication for practice is the need to develop Malaysian patient decision aids which are adapted to suit the culture, address unique patient concerns, and present unbiased information on locally available options; such tools would help patients get the information they need [29].

Doctors who preferred a more paternalistic role believed that they were knowledgeable about the disease and hence more qualified to make decisions for patients. Doctors would question the patient’s ability to make their own choice if the patient had a lower educational status. Studies elsewhere support the idea that HCPs legitimize paternalism due to a perceived education gap between doctors and patients [30, 31]. However, there is growing evidence from Asian studies that most patients want to be involved in decision making, regardless of their education level [32–34]. Therefore, doctors should not assume that they know what is best for patients, but rather engage and educate patients in order to facilitate an informed decision.

Paternalism may also be due to cultural factors; patients from Asian cultural backgrounds have been reported to feel uneasy about sharing a decision with their doctor [35]. As such, shared decision making can be modified to incorporate a model of participatory decision making which also respects hierarchical Asian culture needs [30]. While maintaining the hierarchy between doctor and patient (e.g. retaining honorific titles in conversation), the doctor may have to consciously and clearly communicate to the patient that shared decision making is the appropriate decision making model for preference-sensitive decisions.

HCPs viewed family members as playing an important role in prostate cancer decisions and sought to involve the family in consultations; this was attributed to the close-knit family culture in Asia. Indeed understanding cultural, religious and traditional values plays an important role in how families and doctors manage illnesses [36]. For example, our study differs from studies elsewhere which report that doctors in Asian cultural settings would conceal information or diagnosis from cancer patients in order to discuss it with the dominant family member; the rationale for this was to preserve family relationships, which were seen to be more important than individual autonomy [27]. It is important for HCPs to be trained in cultural competency in family issues; two important domains are understanding how intimate family relationships are ordered, and understanding the manner in which family crises affect caregiving [36].

A limitation of this study is that it only reports the perspective of HCPs about what they perceive patient’s decision making role to be. This may not be a completely accurate interpretation of patient views; patient perspectives will be explored and reported in the next phase of this study. The strength of the study was the breadth of the sampling frame; we recruited HCPs from all major stakeholder categories, different states and the two main practice settings. Capturing views from diverse perspectives was important as few studies have been conducted on prostate cancer decision making in an Asian context.

Acknowledgments

We acknowledge the Director General of the Ministry of Health, Malaysia for permission to conduct the study and publish this article in Ministry of Health settings. We thank all study participants for their willingness to participate.