Yun, Y.H., Lee, M.K., Park, S., Lee, J.L., Park, J., Choi, Y.S., . . . Hong, Y.S. (2011). Use of a decision aid to help caregivers discuss terminal disease status with a family member with cancer: A randomized controlled trial. Journal of Clinical Oncology, 29, 4811–4819.
To test whether a decision aid (DA) consisting of a videotape and workbook focused on explaining how to discuss death with family members is more effective than a videotape and workbook on patient pain control for caregivers of patients with cancer
A computerized random number generator blindly assigned caregivers to either a study treatment arm or a control arm with stratification according to caregiver age and patients’ awareness of their terminal status. The treatment group received a DA consisting of a 20-minute take-home educational DVD and a companion 43-page workbook, Patients Want to Know the Truth, for family members’ disclosure of terminal status to patients intended to facilitate decision making of patient–caregiver dyads. The authors developed and rigorously tested the DA, based on the transtheoretical model, in several earlier studies that appear in refereed journals to support its current study use. The control group received a National Cancer Institute–developed, Korean language DVD of similar length and a 29-page educational booklet developed by the Korean Ministry of Health and Welfare on cancer pain control. Both treatment and control groups were observed and assessed at the same intervals: zero, one, three, and six months.
A randomized controlled trial design was used.
Sociodemographic and clinical characteristics of the treatment and control groups did not differ significantly, nor were there significant between-group differences in baseline DCS, HADS, or CQOL-C scores. By six-month assessment, only 26.8% of the total sample remained. Decisional conflict and satisfaction total score and conflict, uncertainty, and value clarity subscale scores significantly improved from baseline to one month for the treatment group as compared to the control group. Over six months, significant between-group differences continued for the DCS total score (p = 0.40) and subscales for conflict (p = 0.031), uncertainty (p = 0.014), and value clarity (p = 0.039). Depression scores improved significantly more in the treatment group than in the control group, and this was sustained over six months (p = 0.008). In the caregiver groups in which patients knew their terminal diagnosis, at six months, DCS uncertainty and depression scores (p = 0.029 and p = 0.031, respectively) showed significant improvement in the treatment (DA) group as opposed to the control group. In the caregiver groups in which patients did not know their terminal status, only the value clarity and depression subscale scores (p = 0.037 and p = 0.032, respectively) showed significance, with greater improvement in the treatment group at six months.
Theoretically based DAs appear to help caregivers of patients with cancer communicate with terminally patients if trained professionals assist those caregivers in the process of using them. This study found that the use of a DA did not improve the decision to discuss terminal prognosis but did reduce caregivers’ decisional conflict and depression, which is congruent with other literature. The caregivers in the treatment group did not have a decrease in anxiety.
Nurses have a primary role in assisting patients and caregivers in making treatment decisions to improve the quality of decision making for both groups. Helping patients become involved in decision making is an important facet of patient-centered care. Face-to-face discussions among nurses, patients, and caregivers often facilitate family coping when nurses engage in astute assessment and establish a trusting relationship with patients and their caregivers to understand their concerns. Use of DAs may provide an additional way to educate and empower patients and caregivers for difficult conversations, including those surrounding end-of-life prognosis and decisions. Nursing support and conversations about the efficacy of DAs for both patients and caregivers can offer greater insight into needed components of care to meet goals for quality patient and caregiver care during the cancer trajectory.