Study Context

In Sweden, specialized palliative care reaches between 3% and 22% of those dying depending on diagnosis, region, and place of care (The Swedish Register of Palliative Care, 2017). Most deaths occur in institutional settings, with about 40% each in acute care hospitals and in residential care homes (Håkanson, Öhlén, Morin, & Cohen, 2015). A survey of the general public (Westerlund et al., 2018) found limited awareness of issues related to EoL, which impinges on people’s ability to engage in ACP and advocate for quality EoL care. The survey showed numerous descriptions of hinders along with an expressed need for competency building and collaboration across individuals, groups, and communities to support engagement in EoL issues (Westerlund et al., 2018). This inspired development of the Swedish DöBra¹ research program, which uses new public health and participatory action research approaches with the long-term goal of promoting constructive change and contributing to diminishing avoidable suffering related to dying, death, and bereavement.

Data presented here derive from one component of this comprehensive research program, called SweACP. SweACP is a nation-wide research project, planned and conducted in active collaboration among researchers with a variety of disciplinary and professional backgrounds (ethics, ethnology, gerontology, nursing, palliative care, philosophy, social psychology) and a range of national, community-based interest and patient organizations: the Association of Relatives to Cancer Patients, the Dementia Association, the Lung Cancer Interest Organization, Network against Cancer, the Swedish Association for Senior Citizens, and the Swedish National Pensioners’ Organization (PRO).