Experiencing Cancer: Quality of Life in Treatment (review)

Kirsten Costain Schou and Jenny Hewison. Experiencing Cancer: Quality of Life in Treatment. Philadelphia, PA: Open University Press, 1998. 197 pp. $85.00 cloth; $27.95 paper.

Experiencing Cancer: Quality of Life in Treatment, by Kirsten Costain Schou and Jenny Hewison, is a provocative, engaging analysis of the experiences of cancer patients who enter alien but potentially life-saving treatment programs. It challenges the major premise of other quality- of-life research, asserting that changes in the social functioning of the patient rather than internal changes in the individual most profoundly affect the patient's perceived quality of life. Their data suggest that major improvements are needed in health care financing and delivery and in physicians' communication with patients and families. Readers like me who are unfamiliar with the language commonly employed by sociologists may find this book challenging, but the insights gained are well worth the effort expended.

Measuring Quality of Life

For at least thirty years, cancer researchers have been studying the effect of cancer and cancer treatment on patients' quality of life. Schou and Hewison, however, are very critical of the scope of conventional quality-of-life assessments. Quality-of-life studies generally encompass dimensions that are physical or functional (what can patients do unassisted?), psychological (e.g., are they depressed? anxious?), spiritual (issues of love, meaning, forgiveness), or social (personal interactions, financial concerns). As the authors explain, while these studies provide a framework for problem solving to help improve life for an individual patient, they are not able to identify areas for improvement of the health care delivery systems that most profoundly affect quality of life. "A major criticism of psychosocial oncology and quality of life research is that, in retaining an essentially biomedical, individualistic perspective, and focusing on 'health behavior' and behavioural change, such work excludes important features of the experience of illness that involve the social, institutional and political contexts of cancer patients and their families" (15).

Schou and Hewison assert that rather than being a passive biomedical or even psychological process in which isolated individuals react to news of diagnosis and plans for therapy, treatment is essentially a "social interaction." The authors feel that previous studies were too narrowly focused, and "led to lack of adequate consideration of the social aspects of the cancer illness experience. Included in the latter are aspects of the health care system and its impact on patients' and families' quality of life, the social conditions subsuming this system and their impact, the impact on the family, treatment experience itself and especially treatment as a social situation, and the need for more contextual research on illness experience and health care settings" (1). "In a very central sense, quality of life in treatment is about the quality of care and safeguarding those resources most important to it of energy, time and attention" (156).

Rather than employing simply the standardized quantitative quality-of-life tools, Schou and Hewison's studies, founded on the qualitative technique of grounded theory, involved semistructured, one-and-a-half- to three-and-a-half-hour interviews with forty-four cancer patients (and spouses) being treated with radiation alone or with radiation and chemotherapy in a large regional cancer treatment center in the north of England. Most patients had had potentially curative surgery before beginning these "adjuvant" treatments. The subjects completed two quality-of-life questionnaires at home and were either interviewed once, midway through the treatment, or two to four times at various points during treatment (174). The interviews were analyzed for themes, and the theories discussed in the book were constructed from grounded analysis of the text of these interviews.

Physician-Patient Communication / Continuity of Care

As a clinician, I found that considering the therapeutic interaction from the patient and family perspective was quite illuminating, and it revealed challenges posed by the demands inherent in the diagnosis and the treatment plan. Clearly, patients and...