Crisis encounter: narrative accounts of patients' experiences of being told "bad news"
M.R. Gallagher
BMedSci BSc(Hons) MSc
School of Social Science and Planning
RMIT University, Melbourne
Abstract
This paper will outline work-in-progress towards a study of the experiences of patients at the critical time when they are told that they have been diagnosed with a serious chronic or terminal illness or when the results of their diagnosis are ambiguous or uncertain. For such patients, in particular, the point of diagnosis can be a life-changing time. While the key diagnostic experience may occur at a particular point in time it is clear that this event is contextualised by a number of related problems and experiences. A central task of the project will be to identify the nature of these contextual issues and processes in order to develop a more comprehensive understanding of the diagnostic experience itself.
Introduction
The key point of this research program is to explore the narrative accounts of patients at the critical time when they are told of their diagnosis with a terminal or chronic condition. Such an issue arises because the point of diagnosis can be life-changing time for patients. This is especially the case if their diagnosis is of a terminal or serious chronic illness; or if the diagnosis leaves in the patient's mind some uncertainty about future outcomes and possibility of cure. While the key diagnostic experience may occur at a particular point in time it is clear that this event is contextualised by a number of related problems and experiences. A central task of the project will be to identify the nature of these contextual issues and processes in order to develop a more comprehensive understanding of the diagnostic experience itself.
Other issues to be examined include:
(i) the patient's expectations of, and the nature and extent of their preparation for, the diagnostic encounter;
(ii) the systems of communication and support which exist between patient and doctor, between patient and other elements of the medical system, and between patient and non-medical support systems, such as family and support groups;
(iii) the extent to which patients perceive that the diagnostic encounter represents finality, or alternatively leaves open avenues for further action and room for hope;
(iv) the nature of the patient's response to 'bad news' and the affect on their attitudes to themselves, to others, and to future actions and decisions;
(v) the nature of cycles of hope and despair which can accompany the uncertainties of a difficult diagnosis.
Methods
A small number of subjects (8-10) with chronic or terminal illnesses, as described, will be recruited to the research program. Small numbers are typical of this case-study type of narrative research (McCormick, 1996; Stoecker, 1991). This is legitimated by the in-depth nature of the interviews, time spent with each subject and large amount of data generated. There may be as few as one subject in such studies (Fassett & Gallagher 1998; Lumby, 1992). Thus it is possible to "optimise understanding of the case rather than generalisation beyond" (Stake, 1994:236). In this regard attention will be paid to such structural characteristics of individual respondents as gender and ethnicity. The intention here is to identify through the narrative account how patients themselves explained their experience in terms of these characteristics rather than to draw any generalisable conclusions from patient reports. Personal contacts and support agencies such as the Victorian AIDS Council, the Peter McCallum Cancer Institute and the Chronic Fatigue Society of Victoria, will be utilised to this end.
The basis of the methodology used will be qualitative, using illness narrative or story-telling as the technique (Treleaven, 1994; Reissman,1993; Epston & White, 1992; Kleinman, 1988; Reason & Hawkins, 1988). The data will be critically analysed using an immersion process (Moustakas, 1990:10). Computer programs for analysing qualitative data are available (for example: NUDIST). However,the small sample size lends itself to manual analysis. Validity will be assessed by subjects reading the interview data. A modified grounded theory will be utilised as the theoretical framework (Glaser & Strauss, 1967).
Subjects will be interviewed on an individual basis so that they can each tell the story of their encounters with doctors at the time of their diagnosis. Subjects will be asked to recall events and memories in the way that is most comfortable to them and at their own pace. The narrative recall will take place in a conversational manner and I will use the literature search already conducted and my own experiences in order to prompt memories of that time. It is envisaged that, due to the in-depth nature of these interviews, each subject will be interviewed on a number of occasions over a period of a couple of months. Due to the nature of the illnesses of the subjects, the interviews will take place at a location and time of most convenience and comfort to them. With the agreement of the interviewee, each interview will be audiotaped and transcribed verbatim onto disk. To ensure confidentiality, each subject will be assigned a pseudonym and in reporting the research other possible identifiers will be altered.
The project has been submitted to, and given approval by, the RMIT Human Ethics Committee in May, 1998.
A pilot study involving two subjects is to be instigated in August, 1999 in order to establish interviewing techniques and assess such subjects' response to this research proposal. In the following month the study proper will begin.
The results of this work will be presented in the form of a thesis to satisfy the requirements of a Doctor of Philosophy by research. A contract has also been negotiated to present the findings of this study in the form of an academic text.
Discussion
At some stage in their lifetime the majority of people have had the experience of an encounter with a doctor. For many people these have been beneficial and satisfactory encounters. However, a significant number of others have stories to tell of a negative, unsatisfactory or even harmful experience. A number of reasons for this outcome at the interpersonal level have been advanced in the literature including: feelings of loss of control by the patient; flippant attitudes from doctors; doctors' poor communication skills; brevity of visits; lack of empathy on the part of the doctor; lack of information forthcoming from the doctor; or the apparent failure of the doctor to listen to their patients (Cockerham, 1998:173-5,179; Freund & McGuire, 1991:232,241). Moreover, at a structural level, the dominance of the medical profession (Willis, 1989); the selection and education of doctors; the gender bias of the medical profession; the political economy of medicine; and medicine as a culture of scientific detachment may also contribute to unsatisfactory outcomes of the doctor-patient encounter (Starr, 1992).
The doctor-patient relationship is of great importance because it is within this context that a great deal of patient care is delivered (Hahn et al., 1994). Furthermore, as Stoeckle (1988:1) maintains, the role of the doctor is to provide care for the patient. There has been a plethora of original research on the doctor-patient relationship (Eggly, 1997; Woolley & Clements, 1997; Beckman et al., 1994; Herzog et al., 1984; Drew et al., 1983; Freidson, 1961). Nevertheless the medical field acknowledges that there are many problems with the doctor-patient relationship (Branthwaite, 1996; Gold, 1972). These problems include poor communication skills and lack of empathy on the part of the doctor which result in dissatisfaction for both doctor and patient (Myerscough & Ford, 1996:1).
Overwhelmingly, knowledge concerning the doctor-patient relationship has been generated by the medical profession. There exists only limited research from the field of social sciences which addresses the issues from the point of view of the patient (Wiles & Higgins, 1996; Fox, 1989; Vuori et al., 1972). Within the wider context of the doctor-patient relationship this study addresses in particular the critical time at which the patient is informed of the diagnosis of terminal or chronic illnesses. No literature on this event has been located for patients with physical illnesses. It is hypothesised that a satisfactory encounter at the time of communication of diagnosis for a patient faced with such life changing news is highly likely to be beneficial in assisting patients to deal with the new reality of their situation. In this regard story-telling has shown that patients with a chronic illness have difficulty in moving from a "healthy" existence to an "unhealthy" one. The transition which occurs is in the form of an ontological crisis for the patient (Fassett, 1996:18).
Through narrative or story-telling patients will relate their experiences of being given "bad news" regarding their diagnosis or non-diagnosis. Analysis of narrative may be used to relate and understand particular experiences of patients. It would be of considerable benefit to both patient and doctor to identify exactly where problems might exist with the doctor-patient encounter from the experiences of study subjects.
Of particular interest to this study is the critical time at which a patient is given "bad news": that is, they are informed of their diagnosis with a condition which is incurable, terminal, stigmatised or of ambiguous aetiology. Examples of these conditions include: terminal cancer, AIDS, progressive neurological diseases, chronic fatigue syndrome and chronic conditions for which a diagnosis cannot be found. This research will explore this 'crisis encounter' within the context of the patient's 'illness narrative'. That is, it will adopt as its primary approach the creation of opportunities for patients to speak for themselves about their experiences of being told the 'bad news' of negative or non-diagnosis.
Conclusion
Critical analysis of narrative will be used (Reissman, 1993) and from these data the following questions will be explored:
a. How does the patient describe their recollection of the events leading up to, and including, the critical point at which the doctor delivered their negative or non-diagnosis?
b. How does the patient describe their experiences subsequent to their diagnostic determination?
c. How does the patient interpret the role played by their doctor(s) and other significant people in the process of learning about their negative or non-diagnosis and in the management of the time following that event?
d. What do patients identify as the key elements in the relationships with doctors and others which either assist or inhibit their negotiation of the diagnostic encounter?
Finally the goal of the project is to use the analysis of these autobiographical accounts of their experiences surrounding being told of their diagnosis to develop a theory of the doctor-patient encounter with regard to diagnosis. Grounded theory will be utilised to generate this theoretical framework from which recommendations for change to the nature and circumstances of the doctor-patient encounter may be developed.
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