Matthys M, Dhollander N, Van Brussel L, Beernaert K, Deforche B, Cohen J, Deliens L, Chambaere K. The Online Representation of Palliative Care by Practice, Policy, and Advocacy Organizations: Definitional Variations and Discursive Tensions. Qual Health Res. 2021 Oct 11:10497323211043824. doi: 10.1177/10497323211043824.
Abstract
Negative beliefs and a lack of clarity surrounding the meaning of palliative care have been widely reported as obstacles to its uptake. Information available to the public possibly contributes to this. A descriptive and discourse-theoretical analysis was conducted of information spread online by palliative care policy, advocacy, and practice organizations. Discrepancies were found in the way palliative care was defined in relation to curative, end-of-life, terminal, and supportive care. Beyond these definitional variations, meaning was generated through the representation of palliative care as a culture, connected to total care, compassion, and openness. Tensions arose around the concepts of autonomy, a natural death, and an emphasis on the quality of life away from death and dying. Overall, this study showed that the online information of palliative care is a potential source of confusion and might even contribute to its stigmatization. Insights are provided that may help improve clarity toward the public.
