Information giving and decision-making in patients with advanced cancer: A systematic review
Introduction
The past 40 years have witnessed a change from seeing the patient as a passive recipient of health-care to a consumer who demands autonomy. It is expected that patients will at least give true informed consent to their treatment, if not actually making such treatment decisions themselves.
Theoretical benefits of involving patients in health care decisions include better compliance with treatment and increased satisfaction from the encounter, in both patient and health care professional. Possible disadvantages include the extra time and therefore cost involved, inducing patient anxiety and a sense of regret if an adverse outcome ensues as a result of a patient driven decision.
The process of information sharing and decision-making has been investigated in a number of health-care situations, including cancer. Selection of initial treatment, particularly in breast and prostate cancer, is often used as an example. There has been far less study of the harder decisions to be made when the cancer has progressed beyond cure, and becomes a disease relentlessly progressing to death, sometimes over years. Further treatment may prolong life or relieve symptoms, but will not eradicate the disease. A trade off must be made between possible benefits and likely side effects. Patients with late-stage cancer are obviously not easy to study, not least because of their physical frailty and the limited opportunity for follow-up. Their capacity to participate in decision-making may be limited by frailty and cognitive clouding. To what extent are these patients involved in treatment decisions, and do they want to be more involved? Are they sufficiently well informed to participate in decision-making? What measures have been tried to facilitate this process? How can these be further tested and developed?
Section snippets
Methods
A systematic review of the literature was performed to identify studies that tested means of improving patient participation in decision-making and information giving to patients with advanced life limiting cancer. Pubmed (from 1966), PsycInfo (from 1967) and CINAHL (from 1982) databases were searched from the commencement of the electronic database records to the end of 2003 in order to access the relevant medical, psychological and nursing literature. The key terms used were synonyms of
Results
One hundred and seventy two articles were identified. From these, 47 described studies of communication or shared decision-making in patients with advanced cancer; these were conducted in patients suffering different cancers and at various stages of their illness. These studies divide into four themes: they are listed in Table 1, Table 2, Table 3, Table 4. A further 22 papers described studies on decision-making in early cancer. Three of these papers examined the effect of the patient's illness
Studies in early cancer
Interventions used to help patients make informed decisions fall into two groups: those aimed at improving information and communication, and those aimed specifically at encouraging the patient to participate in decision-making and in the outcomes of participation.
Much of the work on expressing decisional preference has involved early i.e. stage I and II breast cancer, using the card sort technique devised by Degner and her colleagues in Manitoba, Canada (Bilodeau & Degner, 1996; Degner et al.,
What do patients want? (Table 1)
Advanced cancer patients demonstrate the same desire for information on all aspects of their disease as the early cancer patients (Blanchard, Labrecque, Ruckdeschel, & Blanchard, 1988; Stewart et al., 2000). Being informed in itself seems to help to maintain a sense of control (Butow, Maclean, Dunn, Tattersall, & Boyer, 1997; Sutherland, Llewellyn-Thomas, Lockwood, Tritchler, & Till, 1989). Preferences for involvement in decision-making are more variable, but around 2/3 of patients in a
Discussion
A small number of randomised controlled trials of interventions have been designed to improve either the ability to convey adequate information between patient and doctor, or active participation in the decision-making process. The majority of studies are uncontrolled trials of interventions, or observational and qualitative studies around the decision-making process. Given the nature of the subject, qualitative studies will reveal valuable information about promoters and barriers to informed
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