Disclosure

While the importance of providing individualised communication to cancer patients is now well recognised, little is known about the stability and validity of patients' expressed preferences for information and involvement in decision-making. This study explored the stability and possible predictors of such preferences over time. Cancer patients seeing two Medical Oncologists in an out-patient clinic at an Australian teaching hospital completed a questionnaire battery before and directly after one consultation, and before their next consultation. Eighty consecutive patients with heterogeneous cancers participated in the study. Preferences for general and specific information, involvement and support were elicited at each assessment. Locus of control and patient familiarity with the clinic were measured before the first consultation. Patient satisfaction with the consultation was assessed directly after the consultation. Demographic and disease data were recorded for each patient. General preferences for information and involvement were relatively stable, at least in the short term; however there was considerable variability in preferences for specific topics of information. Patients whose condition had recently worsened were more likely to want progressively less involvement in decision-making. Gender, the doctor seen and religion were also predictive of patient preferences. Situational factors, such as change in disease status, may alter a patient's preferences for information and involvement. If we wish to match the provision of information and support to the expressed needs of patients, we must ask patients at each consultation what those needs are.

To obtain feedback from patients receiving palliative care and their relatives from various ethnic backgrounds about their experiences of the disclosure process and their satisfaction with information sharing during the illness. A qualitative study with semistructured single interviews. Perth, Western Australia, and Winnipeg, Manitoba, Canada. 72 participants registered with palliative care: 21 patient-family dyads in Perth and 14 dyads and 2 patients in Winnipeg. Participants described their experiences in great detail. The analysis indicates that in information sharing the process is as important as the content. The timing, management, and delivery of information and perceived attitude of practitioners were critical to the process. This applied to information interactions at all stages of the illness. Main content areas mentioned related to prognosis and hope. Hope can be conveyed in different ways. Secondary information from various sources is accessed and synthesised with the primary information. All patients, regardless of origin, wanted information about their illness and wanted it fully shared with relatives. Almost all patients requested prognostic information, and all family members respected their wishes. Information was perceived as important for patient-family communication. Information needs of patient and family changed and diverged as illness progressed, and communication between them became less verbally explicit. Information delivery for patients needs to be individualised with particular attention to process at all stages of illness. Patients and families use secondary sources of information to complement and verify information given by health carers.

Ours is an era in which patients seek greater engagement in health care choices, increasing the demand for high-quality information about clinical options. Providing support for informed choice is not straightforward, however, because of challenges faced by clinicians, health systems, and consumers. Greater use of written or electronic tools can help to clarify choices for patients, but decision aids cannot replace the human element in facilitating informed choice. The ideal solution is to couple information with high-quality decision counseling to help patients understand the potential risks, benefits, and uncertainties of clinical options and to assist them in selecting the option that best accommodates their personal preferences. Decision counseling can be offered by 3 types of providers: clinicians who lack formal informed-choice training ("usual care"), clinicians with formal informed-choice training, or trained third parties who function as impartial decision counselors. Controlled studies are needed to determine which model is best, but none appears to be ideal. The health care system cannot truly support informed decision making without correcting the underlying obstacles that impede patient access to needed information. New information technology solutions, training programs, and reimbursement schemes are necessary. Patient demand for guidance will only increase as clinical options multiply and the world of information continues its rapid growth. Today's health care system is unprepared for the convergence of these 2 burgeoning domains, and the need to address systemic deficiencies will grow more urgent over time.