Fluctuating awareness of treatment goals among patients and their caregivers: a longitudinal study of a dynamic process

Background Because increasing numbers of people now survive for months or years with advanced cancer, communication between patients, service providers, and family caregivers often continues over long periods. Hence, understanding of the goals of medical treatment may develop and change as time elapses and disease progresses. This understanding is closely related to the “awareness of dying,” which has been studied in both qualitative and quantitative research. However, when both a patient and family caregiver are involved, the question of “awareness” becomes more complex. A recent longitudinal study reported on patient and caregiver knowledge of treatment goals, but no comparison of such knowledge using matched interview schedules and paired data analysis has been provided. This report examines patterns of awareness and factors associated with these patterns. Materials and methods One hundred sixty-three patients with incurable cancer and their nominated principal family caregivers (136) were recruited from The Canberra Hospital Oncology Services. Participants’ understanding of the treatment goals were measured by interview questions at weeks 1 and 12. Results One-third of both patients and caregivers understood that the treatment goal was not curative; however, not all patient and caregiver pairs had the same understanding. In 15% of pairs, both patient and caregiver believed that the goal of treatment was curative, while another 13% said that they did not know the aim of the treatment. Thirty-nine percent of pairs registered incongruent responses in which only one member of the pair understood that the treatment was not intended to cure the disease. Over time, a few respondents changed their perception of the treatment goals toward accurate clarification. Bivariate analysis using an awareness variable, constructed for the purpose, showed that in 6 months before death, at least one person in 89% of pairs understood that the treatment was noncurative. Time-to-death, gender, and place of residence were also important predictors of knowledge. Conclusions Discrepancies between patients and their caregivers may complicate the delivery of effective care when patients are seriously ill. Misunderstanding or uncertainty about treatment goals will obstruct proper informed consent. Health professionals providing care for families dealing with advanced cancer must recognize that the discussion of treatment goals is a dynamic process, which may require them to extend their communication skills.