Breast cancer patients’ experiences of patient–doctor communication: a working relationship

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Abstract

The traumas of diagnosis and treatment for breast cancer are well researched and generally addressed in care. While women with breast cancer continue to identify the need for better communication with physicians, studies to date have not investigated how the process of communication between physicians and women with breast cancer actually unfolds. This phenomenological study therefore explored how women with breast cancer experience patient–physician communication to gain a greater understanding of effective approaches. Interviews of a purposeful sample of 11 women within 6 months of initial diagnosis or recurrence of breast cancer were audiotaped, transcribed verbatim and analyzed using inductive interpretation. Themes and patterns of positive and negative experiences emerged. All experiences began with the woman’s feeling of vulnerability. In positive experiences, information sharing and relationship building were inextricably linked components of a working relationship which was at the same time affective, behavioural and instrumental. This experience, in turn, influenced the woman’s experience of control and mastery of the illness experience, and their experience of learning to live with breast cancer. Findings illuminate the importance of comprehensively patient-centred, working relationships. Several specific techniques to enhance effective communication are identified.

Introduction

Confronting treatment for breast cancer is a major life challenge. Many practical problems accompany health care for this life-threatening disease, including issues of treatment choice, communication, psychological support, continuity of care [1], [2] and physician approaches [3]. At a recent Canadian National Forum on Breast Cancer, participants identified the need for better communication of information and improved patient–physician relationship, particularly shared decision-making [4], as universal themes. Recent qualitative research has identified specific causes of distress characteristically unrecognized by physicians: women’s reactions to their physicians’ attitudes; referral delays; depression; physical side effects of treatment; problems with prostheses; and psychological reaction to the loss of a breast [5].

Several solutions to these problems appear in the literature. Opportunities to fulfill information needs [6], [7], [8], [9], to express feelings and ask questions [10], and to assume some control in decision-making [9], [11], [12] repeatedly have been documented as important. As well, counselling has been found to reduce distress [13]. Quantitative outcomes-based research of the communication experiences of women with breast cancer have demonstrated the positive impact of excellent communication on reduction of anxiety [6], [7], depression [6], [7], and emotional distress [10], [11], [13]. Substantial literature also supports the conclusion that patients are empowered by an excellent communication process with health professionals [19], [20], [21], [22], [23], [24], [25], [26].

Yet a plethora of literature has reported the breadth and depth of continuing concern with this area [14], [15], [16], [17]. Physician behaviours portraying or facilitating excellent communication have been found to occur very infrequently [10], [12], [25]. Positive patient behaviours apparently have not compensated for these limitations [10], [26]. Despite clear evidence of the substantial needs for information and support among women with breast cancer [27], [28], these women continue to report difficulty in understanding their doctors (49.5%) and in expressing their feelings to them (46.3%) [10]. Physicians continue to underestimate both their problems in communicating and their patients’ level of distress [29].

Qualitative studies to date have documented aspects of the experiences of women with breast cancer, including the meanings of illness [30], [31], the growth-producing struggle of living with the uncertainty of breast cancer [32] and the key events which cause distress [5]. Using Lipowski’s [31] theoretical framework of how individuals cope through their conceptualization of illness, Luker et al. [30] classified the meanings which women with breast cancer assigned to their illness, and found that the vast majority identified their experience as a challenge (62%), while fewer described their illness as ‘value’, ‘enemy’, ‘loss’, ‘weakness’, ‘punishment’, ‘relief’, ‘strategy’, and ‘warning’. The generally positive attitudes of study participants suggest the appropriateness of working with these individuals to overcome their illness.

In a phenomenological investigation of how women with breast cancer experience the uncertainty of their illness, Neilson [32] uncovered these women’s vicissitude of emotions, reliance on supportive relationships, transitions through learning new ways of being in the world, reflections on self, and acceptance of uncertainty as part of life in their struggle to gain meaning. Findings led this researcher to emphasize the importance of caring interactions, including discussion of the woman’s personal experience.

Research by Jones and Greenwood [5] further illuminates communication needs, identifying causes of distress (including: worry; fear of recurrence; physicians’ attitudes; delayed referrals and appointment times; depression; fatigue; and weakness, as well as multiple side effects of treatment) often underestimated by physicians. Yet studies to date have not specifically examined the experiences of patient–physician communication, to ascertain if and how these psychosocial issues are addressed.

While much is known about the communication problems and needs of women with breast cancer, their actual experience of the process of patient–physician communication has not been thoroughly documented. There is therefore little information to guide practitioners on how to go about refining their communication approaches. The purpose of this research study was to explore in-depth how women with breast cancer experienced the very sensitive and real life dimensions of patient–physician communication in order to obtain a greater understanding of how effective communication might be achieved.

Section snippets

Methods

Consistent with exploratory investigation of human experience of everyday life, interpretive phenomenology was used to study the meanings, motives, intentions, emotions, and feelings experienced by women with breast cancer with respect to their communication with all physicians involved in their care experience regardless of physician role and/or speciality [33], [34], [35].

Findings

Women with breast cancer described both positive and negative experiences of patient–physician communication. Their individual experiences encompassed encounters with three to eight physicians (x̃=4.45). Six of the 11 women had one to three female physicians on their medical team (x̃=2). Of the total of 49 physicians who had cared for these women, 12 were female, and 37 were male. Together, they represented the disciplines of Family Medicine, Oncology, Surgery, and Radiology. Relationships with

Discussion

While interpretative research does not aim to achieve generalizable findings, the understanding derived from such studies may have applicability for others confronting similar situations. The real-life experiences described in this study illuminate many of the challenges of patient–physician communication related to breast cancer care: the range of emotions women experience when diagnosed; the pitfalls associated with communicating bad news; and the delicate art of providing hope, realistic

Conclusion

The findings of this study illuminate how women with breast cancer experience patient–physician communication and underscore the importance of creating a working relationship built upon a patient-centered approach [51] and an enabling rather than expert model of helping. Insights into the dynamic, synergistic interaction between information sharing and relationship building and the significance of this interaction to restoring the woman’s sense of control over her life and health and,

Acknowledgements

The authors wish to acknowledge the women with breast cancer who participated in this study, and the survivors of breast cancer who have provided on-going advice at all phases of this research project. The talents of Carol Thompson and Linda Boyd in preparing the figure portraying the complex model of patient–physician communication and the invaluable services at the Canadian Library of Family Medicine are also acknowledged. This study was funded by the Canadian Breast Cancer Initiative. The

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