Background
Doctor-patient communication is a crucial aspect of patient care. It is associated with patient adherence [
1] and increased use of alternative and/or unnecessary treatment [
2]. It is also related to the satisfaction with care [
3] and quality of life [
4].
However, previous findings suggest that there are still unmet needs of cancer patients relating to the communication in consultations. For instance, breast cancer patients had high unmet information needs regarding their health and were dissatisfied with the information provided by care providers [
5,
6]. Moreover, patients’ affective responses were not adequately addressed in medical consultations [
7]. Although quality of life issues are discussed in cancer consultations, the focus is mainly on treatments and symptoms and other aspects, such as psychological health and social and spiritual dimensions of quality of life, are rarely addressed in cancer consultations [
8]. Given the current state, it is not surprising that issues related to information and psychosocial aspects of cancer care are ranked highly among the most unmet needs in studies with cancer patients [
9].
Furthermore, as patients might face different challenges and difficulties across the phases of the cancer continuum [
10,
11], their needs and preferences might vary, including those regarding the communication, and the way doctors communicate with them should be responsive to these evolving needs. For instance, Dowsett and colleagues [
12] examined preferences for communication style in cancer consultations with breast cancer patients and their relatives, and found that a preference for a patient-centered approach was especially prominent in the case of a poor prognosis. Also, a study by Vogel, Bengel and Helmes [
13] with 135 German breast cancer patients found that information needs and decision making preferences can change during the course of treatment. Patients rated the quality of information received from physicians significantly better at baseline compared to 6 months later and shared decision making was uncommon in the first 6 months of treatment.
Although previous reviews suggest evolving needs and preferences relating to the communication in cancer consultations [
5,
14], there have been relatively few studies conducted on the subject. To our knowledge, the study by Thorne and colleagues [
15] is the first study that qualitatively explored communication needs in cancer care. According to Thorne et al. [
15], what makes communication helpful in one phase of cancer care might not necessarily be helpful in another phases of cancer care, and it is important to explore the optimal ways of communication that effectively address these evolving needs and preferences. One appropriate strategy for exploring this topic is to ask the stakeholder, that is the cancer patients, directly. According to Wright et al. [
16], patient perspective regarding effective communication should be taken into consideration when developing communication programs for care providers in oncology.
Despite its importance, studies that explore the communication experiences of cancer patients from their perspective, and throughout the continuum of cancer care, are few. In an attempt to understand effective communication strategies responsive to the evolving needs and preferences of breast cancer patients in cancer consultations, this study explores the communication experience in cancer consultations, over the course of the cancer continuum, using in-depth interviews with seven breast cancer patients.
Discussion
This study explored experiences of breast cancer patients in cancer consultations and analyzed communication problems and needs of consultations across various phases of the cancer trajectory.
From accounts of patients, it seems that two aspects of cancer need to be addressed in a cancer consultation: the medical aspect and the human aspect of cancer [
18]. Interviews revealed that patients perceived cancer also as ‘a disease of the mind’, underlining the notion that cancer care providers should provide appropriate care for the psychological dimensions of the cancer experience in a consultation. Emotional impact of cancer appeared particularly salient in the period of diagnosis, recurrence, and advanced stages of the disease. However, from patients’ perspectives, clinicians’ skills with particular aspects of the consultation, such as “breaking bad news”, tend to be lacking [
19]. Patients from our study reported that composure and verbal or non-verbal expressions of empathy from physicians were helpful in dealing with emotions provoked by the cancer diagnosis. Moreover, as suggested by Thorne et al., given the fact that patients are shaken by the diagnosis, cancer care providers should carefully consider the quantity and quality of information given to patients in a consultation and be responsive to patients’ needs and preferences at this stage of heightened emotionality [
15,
20]. Recurrence and the transition to advanced stages of the disease constitute another critical moment in which emotional aspects of communication assume significant importance. As patients struggle with uncertainties over the course of the disease, communication at this stage might benefit in helping patients to sustain ‘a thread of optimism’ in the face of uncertainty. Honest communication, balanced with hope, was what patients were asking for [
15].
In a related topic, it is necessary to guarantee sufficient consultation time to address the psychological needs of patients in a cancer consultation. However, the reality in most oncology care settings is far from ideal. It seems that patients are well-aware of the limits imposed by short consultation times. While efforts to ensure appropriate consultation time are needed, in the current situation, the effective management of limited time is of considerable importance. One way to achieve that is to give particular attention to non-verbal aspects of the cancer consultation. Non-verbal aspects of communication mattered, and what mattered to patients was not so much ‘what doctors said’, but ‘how they said it’. Non-verbal communication also helped to increase trust towards doctors [
21]. Related to this, Thorne et al. found that cancer patients perceived time to be a precious resource in the consultations with care providers and one way of “buffering time challenges” (p. 503) was to use verbal or non-verbal expressions of compassion [
22]. Another way of making the most of the limited consultation time is to improve patients’ communication competency in a cancer consultation. Patients need to learn to prioritize communication issues and learn skills to systematically explain their problems. One example of a learning tool is the online program developed by Porter and colleagues in which patients were taught how to communicate their emotions to cancer care providers [
23].
Moreover, patients’ psychological state and communication needs evolved according to the context of treatment. As the context of treatment varies, so does what patients perceived important and what they want from doctor-patient communications. Our findings also suggest that as patients progress further in the course of cancer care trajectory, they seemed to be more empowered, playing a leading role in their course of care. Specifically, in the phases of diagnosis and pre-surgery, patients took a passive stance and tended to count on their physicians completely. Thorne et al. recommends that clinicians assist patients’ decision making process with their expert guidance, as patients have to make critical decisions regarding treatment at these early stages [
15]. After surgery, patients assume a more active stance, taking more initiatives and asking more questions. As they progress through chemotherapy treatments, patients want more active communication and the need for questioning increases. Thus, it is important for them to be ensured that they will have opportunities to ask questions in the consultation.
Allowing patients to ask questions in a cancer consultation addresses patients’ need for information, which is important for cancer care in a number of ways. First of all, information exchange is a critical communication function throughout the course of the cancer care and will help foster the relationship [
24]. Furthermore, when patients experience functional impairments, but have limited information because it was not sufficiently addressed in a cancer consultation, they will interpret these impairments in their own way, possibly leading to increased distress and maladaptive coping [
25]. Information given should be comprehensible as it is associated with reduced fear of cancer progression [
26]. In addition, in the study by Germeni and Shulz [
27], cancer patients showed both information seeking and avoidance patterns and the motivating themes behind these two patterns varied from the initial diagnosis to the treatment phase, suggesting a need for phase-specific information provision.
Additionally, Thorne et al. [
15] suggested that as patients conclude treatment, they were confronted with new anxieties associated with symptom management and vigilance over their state of health, in particular recurrence. Effective communication at this stage should pay attention to assisting patients in their attempt to assume a more active role and take on more responsibility in their cancer care. Furthermore, as patients continue to feel anxiety and suffering even after treatments are completed, as observed in our study, caring for these emotional issues with empathy will be necessary as these emotional issues have their cost. For instance, fear of recurrence was associated with higher health costs and lower monitoring rates [
28].
Van Dalen suggests that the effectiveness of communication will increase depending on the degree in which physicians attempt to understand the patient’s perspective, which includes the patient’s context [
25]. The specific phase in which patients are in, with specific challenges and needs in the cancer trajectory, might constitute such context and effective communication should involve addressing these challenges and needs. This study is one of only a few such efforts that explored the communication experience of breast cancer patients, from their own perspective, throughout the continuum of cancer care. Current findings can provide evidence-based recommendations for communications with cancer patients and take into consideration the phase-specific communication needs of patients.
However, the study findings should be considered within the limitations. The sample size was relatively small and the participants were breast cancer patients who are relatively young and participating in a meditation program at a breast cancer clinic. Thus, the generalizability of the findings is limited and potential selection bias should be considered in the interpretation of the findings.
Moreover, as communication needs and preferences might vary also in terms of the patients’ personal characteristics, such as age and gender, further studies should be carried out with other types of populations. For instance, while older patients want information regarding the disease and treatments like younger patients, they showed less interest in the details [
29].