Taking responsibility for cancer treatment

Abstract

One hundred and fourteen consecutive patients with early breast cancer were entered into a study on the psychological effects of involvement in treatment choice. All women were offered counselling throughout. One group of women (n=34), were advised to undergo mastectomy, due to the nature or position of the tumour. These women fared less well psychologically when compared on a battery of measures, before and after surgery, with women who were involved in choosing their own treatment (n=80). The latter group itself was randomly allocated into two groups for taking explicit responsibility for treatment choice, using a double-blind procedure. These were a Patient Decision Group (n=41) and a Surgeon Decision Group (n=39). Results support the hypothesis that over and above the benefits of receiving their preferred treatment, women can further benefit from taking explicit responsibility for their treatment choice.

Introduction

Patient involvement in treatment choice for early breast cancer has become of paramount importance since it was reported that equivalent outcome in terms of survival and disease-free interval could be established for alternative treatments (Fisher, Bauer, & Margolese, 1985). Against a background of reports of psychological malaise following treatment by mastectomy (Maguire et al., 1978; Ray, 1980), the question was raised of whether improved psychological outcome would be found with conservative treatment. However, evidence has not been found to support this, except specifically in relation to body image (Carlsson & Hamrin, 1994; Fallowfield, Baum, & Maguire, 1986; Sanger & Reznikoff, 1981; Schain et al., 1983; Schover, 1994; Stefanek, 1993). If neither conservative nor alternative treatment was superior overall for psychological outcome, one approach would be to involve patients in the decision-making procedure regarding choice of treatment. Research to date has produced mixed results on this issue. Some studies have shown that such involvement proves beneficial to patients in general and to their husbands, at least in the short-term (Ashcroft, Leinster, & Slade, 1985; Fallowfield, Hall, Maguire, & Baum, 1990; Morris & Royle, 1987; Morris & Ingham, 1988; Pozo et al. 1992; Till, Sutherland, & Meslin, 1992), while other studies have found that most patients prefer to leave decision-making to their physicians (Degner & Sloan, 1992; Hack, Degner, & Dyck, 1994; Sutherland, Llewellyn-thomas, Lockwood, Tritchler, & Till, 1989). Although these discrepant findings may in part be due to sample, study and method differences, there is also a need to unpack the concept of decision-making and control in order to see what aspects are helpful and what unhelpful, if any.

Involvement in decision-making has a number of parameters related to the experience of personal control. ‘Decisional Control’ (Sarafino, 1998; Hack & Degner, 1999), in a medical context, refers to the opportunity to decide between alternative medical procedures or courses of action : in the case of breast cancer, between mastectomy and lumpectomy. However, ‘decisional control’ can be further subdivided into two separable but interrelated components.

The first of these subcomponents is having direct informational input into the decision-making process such that the patient both receives their preferred treatment and also feels that their wishes are being taken into account. A method for facilitating this process with individual patients has been described previously by our group (Owens, Ashcroft, Leinster, & Slade, 1987). The second component involves taking personal responsibility for the treatment decision that is made. It may be the case that patients desire the first of these but not the second; or that they want both or perhaps neither.

The aims of the current study were therefore twofold. First, to attempt a replication of previous work comparing the psychological response of patients involved in treatment choice with that of patients advised to undergo mastectomy, but extending the breadth of the psychological assessment. The second aim was to test two hypotheses concerning the importance of ‘decisional control’ as outlined above. These two hypotheses can be expressed in the following terms :

Hypothesis 1. That patients who are given the opportunity to participate in the decision-making process (choice) show reduced psychological morbidity relative to those for whom no choice is possible/available (compulsory mastectomy).

Hypothesis 2. That patients who are given the opportunity to participate in the decision-making process and who are also asked to make the final decision (take responsibility for the decision) will show reduced psychological morbidity relative to those who have input but are not given responsibility for the final choice (no responsibility).

This study extends previous work in the area by separating out the effects of (a) a woman receiving her preferred treatment and (b) a woman taking responsibility for her treatment choice. These two factors have been confounded in previous research.