Dignity therapy for patients with brain tumours: qualitative reports from patients, caregivers and practitioners

Most individuals with brain tumours experience distress or cognitive impairment during the illness trajectory, potentially causing decreased quality of life, strain on interpersonal relationships and altered sense of self or of the world. Symptoms of brain tumour and treatment can cause increased reliance on others and decreased in sense of dignity. Dignity is an important consideration when caring for patients, as it can influence decisions at end-of-life. Dignity therapy (DT) is a therapeutic intervention that was developed for patients near the end of life. DT encourages the patient to reflect on the life lived, including important roles and sources of pride, resulting in the development of a 'Legacy Document'. DT has been shown to enhance quality of life and dignity, and reduce psychological and existential distress for patients at the end-of-life. There is little literature on the effectiveness of DT, or other quality of life interventions, in brain tumour populations; This paper reports on the feasibility of conducting DT with this population, and presents qualitative data gathered from patients with brain tumours who participated in DT, their caregivers, and their Dignity Therapists.

Participants were recruited from the Odette Cancer Centre in Toronto. One of five Dignity Therapists conducted the intervention; time data was logged. Immediately after the intervention, patient participants, their caregivers, and Dignity Therapists were sent an open-ended, self-report survey about their experience with DT. Qualitative content analysis was conducted by an impartial reviewer. Average time taken to conduct the intervention was determined.

Fifteen out of the 17 recruited participants (88%) completed the intervention; 2 were unable to complete the intervention due to progressing disease. Qualitative data was categorized according to two main areas of interest: Acceptability and Impact. Four participants, 5 caregivers and 4 care providers completed the qualitative surveys. All 4 patient participants reported benefits of DT that related to communication and/or advanced care planning (ACP). Dignity therapists felt that the impact on their patients was positive, and reported satisfaction as a clinician.

The low attrition rate for the intervention suggests that DT is feasible in this population, though the required time to complete DT might be difficult for healthcare practitioners to provide within the recommended timeframe for this therapy. Positive qualitative reports on the effect of DT from patients, caregivers and dignity therapists alike indicate that DT is a promising intervention for this demographic.