Purpose/objectives: To gain a better understanding of patients' and healthcare providers' preferences regarding when, how, and by whom advance directive information should be given and to explore the nursing role in advance directives.
Design: A qualitative study using focus group methodology.
Setting: A National Cancer Institute-designated comprehensive cancer center located within a large, university-affiliated, tertiary care hospital in the northeastern United States.
Sample: Two samples participated in the study: eight adult ambulatory patients with cancer and 15 healthcare providers (4 physicians, 10 nurses, and 1 social worker).
Methods: Separate patient and provider focus groups were conducted in private rooms by experienced facilitators using an interview guide with questions based on the literature, the hospital's advance directive materials, and the investigators' experience; sessions were audio-taped, transcribed, and analyzed using qualitative data analysis techniques.
Findings: Patients and healthcare providers discussed focus group questions and commented that advance directive discussions should be provided early in the treatment or illness, presented in a short and simple format with reading materials at a level appropriate for the patient, and continued throughout the illness with those who desire follow-up. Nurses, doctors, social workers, or a designated/trained advance directive person were individuals that the patients identified as people with whom they could have advance directive discussions.
Conclusions: Results suggested that advance directive information should be given prior to hospital admission, be provided in a variety of formats, and that nurses, social workers, doctors, or designated staff representatives could all be part of the advance directive process.
Nursing implications: Nursing roles should include early assessment of patients to determine needs for discussion, advocacy on behalf of patients, and provision of information. Future research should examine use of specific personnel for facilitating advance directives and compare different formats for presenting advance directive information to patients.