Patients’ experience of cancer: evidence of the role of ‘fighting’ in collusive clinical communication

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Abstract

Clinical communication with patients with cancer should be based on an accurate understanding of psychological responses to cancer, but existing assumptions about these responses may not be accurate. Male and female ambulant patients (N=30) provided a sample that varied in type, stage and prognosis of cancer. Interviews about their experience of cancer were audio-recorded and analysed qualitatively. The predominant response was a desire to conceal emotional distress, often to protect others including family and clinicians. Patients perceived clinicians as promoting ‘fighting’ and a ‘positive attitude’. However, for patients, these responses meant resisting the expression of emotional distress rather than the disease. By encouragement to ‘fight’ and ‘be positive’, clinicians may therefore collude with patients’ emotional suppression. For some patients, cancer led to re-evaluation of life; future research should examine whether and how clinical communication influences this form of adjustment.

Introduction

It is widely accepted that clinician communication is an important component of the clinical care of patients who have cancer. Much attention has focused on how diagnosis is presented [1]; communication that follows diagnosis has received less attention. Although communication after diagnosis necessarily focuses on treatment options [2], it should also address patients’ psychological needs.

Current understanding of patients’ psychological needs after diagnosis has been shaped by a categorisation of psychological responses to cancer that was begun over 25 years ago and based on clinical assessments of patients with breast cancer. Initially, the categorisation focused on patients’ emotional expression. In a sample of patients undergoing breast biopsy, those categorised by the researchers as extreme suppressors of anger and other feelings were more likely to be diagnosed with cancer than were others [3]. Study of the sub-group of patients with cancer continued with a further psychological assessment 3 months after mastectomy, when each patient was allocated to one of four mutually exclusive categories according to their predominant psychological response: denial; fighting spirit; stoic acceptance; helplessness/hopelessness [4]. The categories were decided after a preliminary study that was not reported, but their theoretical and clinical importance was indicated by recording survival to 5-year follow-up. Survival proved more likely in the denial and fighting spirit groups than in those allocated to the stoic acceptance and helplessness/hopelessness categories. Follow-up to 10 years found a similar divergence in mortality [5].

Subsequently, a self-completed questionnaire was devised to measure the strength of each of these four types of response to cancer [6]. Factor-analyses have not always confirmed the distinction between these responses [7]. Nevertheless, having a way to measure responses to cancer has stimulated developments in clinical communication and focused research. A psychotherapeutic treatment, adjuvant psychological therapy, has been devised to facilitate some types of response (particularly fighting spirit) and to reduce others (including acceptance and helplessness/hopelessness) [8], [9]. Psychological responses to cancer have also become important elements of psychobiological theory and clinical research. They contributed to the development of the theory of the type C (or cancer-prone) personality [10], and evidence linking specific types of response with longer survival has contributed to psychoimmunological theories about the relationship of coping style to immunological processes [11]. In clinical research, patients’ psychological responses to cancer have sometimes been measured as treatment outcomes in their own right.

The early attempts to categorise patients’ psychological reactions to cancer have therefore been very influential. Their importance has been to demonstrate that such reactions are not epiphenomena, but are important components of patients’ clinical presentation that can be influenced therapeutically and that might, in turn, have clinical implications in their own right. However, for the theoretical and clinical inferences that are drawn from such research to be valid, it is important that psychological responses to cancer have been conceptualised accurately. Recently, however, assumptions about the concept of fighting spirit have been questioned because of findings that, contrary to earlier evidence, it has no association with prognosis in breast cancer [12], [13]. The initial approach to categorising patients’ reactions to cancer apparently relied on clinical researchers’ subjective judgements. Since this pioneering work was reported, the importance of qualitative research methods has become appreciated in medical research, and in psycho-oncology in particular [14]. Rigorous procedures are necessary to ensure that patients’ responses to disease and treatment are described in ways that reflect their experience rather than researchers’ assumptions. Surprisingly, there has been little attempt to describe patients’ psychological reactions to cancer systematically in this way.

We therefore re-examined patients’ responses to cancer using qualitative methods to identify important components of their experience. The concepts identified in previous research were derived from patients with breast cancer shortly after primary treatment. In order to derive findings that might more validly be transferable to a variety of ambulant patients with cancer, we sampled patients with different types of cancer, with contrasting prognoses and at different stages in the trajectory of their illness. The approach of previous work to categorise patients implies that different kinds of reactions are mutually incompatible or that patients have predominantly one kind of reaction. A secondary aim was therefore to derive hypotheses as to whether and how different components of patients’ experience might be inter-related.

Section snippets

Patients

Sampling was purposive, to ensure variability of types, stages and prognoses of cancer in male and female adult ambulant patients. Therefore, 33 patients were approached (of whom 30 consented) in relevant hospital clinics including general oncology clinics and follow-up and pre-admission clinics at a general teaching hospital, and from outpatient clinics and day-care at an associated hospice. All patients and practitioners were white. Participating clinicians identified patients who had

Sample

Details of participating patients are shown in Table 1. They spanned a wide range of ages and included a range of types of cancer. Patients were interviewed from 3 days to 19 years after cancer was first diagnosed.

Types of response to cancer

The analysis first identified a nearly universal type of response concerned with concealing distress from other people. Beyond this, several specific types of response were identified, which were subsequently grouped under the broad headings of responses which rejected or accepted the

Discussion and conclusion

Several findings were consistent with ways in which psychological reactions to cancer and other serious illness have previously been categorised in clinical and research literature (Table 2). Minimisation of disease, fear, shock and the search for explanation are all familiar in previous work [8], [22]. The discussion will therefore focus on responses that differed in important respects from previous descriptions and on responses that have been disregarded hitherto.

The main response that our

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