Breast cancer patients’ experiences of patient–doctor communication: a working relationship
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 (). Six of the 11 women had one to three female physicians on their medical team (). 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
References (51)
- et al.
Choice of surgery for early breast cancer: psychosocial considerations
Soc Sci Med
(1988) - et al.
Information to and communication with cancer patients: improvements and psychosocial correlates in a comprehensive care program for patients and their relatives
Patient Educ Couns
(1995) - et al.
Relationship between preferences for decisional control and illness information among women with breast cancer: a quantitative and qualitative analysis
Soc Sci Med
(1994) Measurement and practical aspects of quality of life in breast cancer
Acta Oncol
(1996)- et al.
Information, support, and communication needs of women with a family history of breast cancer
Cancer Nurs
(1996) - et al.
Influence of physician communication on newly diagnosed breast patients’ psychologic adjustment and decision-making
Cancer
(1994) - Report on the National Forum on Breast Cancer. Health Canada: Minister of Supply and Services Canada,...
- et al.
Breast cancer: causes of patients’ distress identified by qualitative analysis
Br J Gen Pract
(1994) - et al.
Psychological outcomes of different treatment policies in women with early breast cancer outside a clinical trial
Br Med J
(1990) Effects of preparatory patient education for radiation oncology patients
Cancer
(1958)
Women’s perceptions of their experiences with breast cancer: are their needs addressed?
Eur J Cancer Care
Information needs and decisional preferences in women with breast cancer
JAMA
Communication between patients with breast cancer and health care providers: determinants and implications
Cancer
Effect of counselling on the psychiatric morbidity associated with mastectomy
BMJ
Claiming power in the medical encounter: the whirlpool discourse
Qualitative Health Res
Information and participation preferences among cancer patients
Ann Intern Med
Empowerment: notes on professional and community dimensions
Can Rev Soc Policy
A study of personal empowerment: implications for health promotion
Health Promot
Creating empowering meaning: an interactive process of promoting health with chronically ill older Canadians
Health Promot Int
Powerlessness, empowerment and health: implications for health promotion programs
Behav Change
Citizen participation, perceived control, and psychological empowerment
Am J Community Psychol
Breast cancer and communication: an annotated bibliography
Physician–patient communication about breast cancer: a challenge for the 1990s
Surg Clin North Am
Factors affecting treatment decisions for a life-threatening illness: the case of medical treatment of breast cancer
Soc Sci Med
Information and decision-making preferences of hospitalized adult cancer patients
Soc Sci Med
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