This episode features Dr Geraldine Foley (Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Trinity Centre for Health Sciences, Dublin, Ireland). Gerladine provides a summary of her letter, where she discusses how researchers have an opportunity to identify and learn from the benefits and/or challenges of conducting video-based online interviews with patients and caregivers in palliative care research. Online interviewing through videoconferencing platforms in palliative care research might well become a ‘new normal’ in COVID-19.
This episode features Professor María Arantzamendi (Institute for Culture and Society-ATLANTES, Universidad de Navarra, Pamplona, Spain).
In the context of patients with incurable disease palliative sedation is used for refractory symptom control. A minority of articles measure the effect of palliative sedation and current assessment of parameters of such effect is limited. The literature about palliative sedation measurement has mainly focused on medication use and level of sedation.
Discomfort Scale-dementia of Alzheimer Type (DS-DAT) and Patient Comfort Score (PCS) are assessment instruments being used to measure the effect of palliative sedation on patient comfort, the latter being validated for palliative care context. There is limited evidence on the timing of assessment, reported use ranges from daily assessment to six times per day, with often hourly measurements until adequate sedation is achieved. There is limited data available on the training and preparation of the health professional who has the responsibility for assessing refractory symptoms and palliative sedation. There is a lack of evidence, regarding measurement approaches or instruments for assessment of existential and psychological distress leading to palliative sedation; and also, for measuring adverse events.
Measurement instruments adapted to palliative care context should be used to assess palliative sedation, as these will facilitate practice improvement and comparability of the study’s results. Adding measurement instruments for comfort can contribute to assessing palliative sedation effects. A more standardized approach to assessing the effect of palliative sedation and possible adverse events, paying special attention to adequate training of health care professionals and timing of measurements, is needed to improve the quality of palliative sedation.