Developing and using a structured, conversation-based intervention for clarifying values and preferences for end-of-life in the advance care planning-naïve Swedish context: Action research within the DöBra research program

Exploring Community-Dwelling Older Adults’ Considerations About Values and Preferences for Future End-of-Life Care: A Study from Sweden

“…As ACP is not practiced in Sweden, and there is limited public discussion of EoL issues, we were reluctant to predetermine a sample and risk unexpectedly confronting potential participants with issues related to death and dying to which they would have to respond. After obtaining ethical approval (Stockholm #2015/106–31/5), we therefore used purposeful sampling and a recruitment process based on active volunteering, in collaboration with the above-named community organizations ( Tishelman, Eneslätt, Menkin, & Lindqvist, 2019 ). Information about the project was presented in several organizations’ membership newsletters and at membership meetings of local chapters of PRO, with instructions to contact the researchers for more information if interested in participating.…”

“…The audio-recorded interviews were held in conversational form and were supported by an interview guide with topics to cover and probing questions. The protocol had been previously tested in group discussions with volunteering representatives of the collaborating organizations ( Tishelman et al, 2019 ).…”

“…The term EoL was not predefined by researchers, but participants discussed it as the last months, weeks, or days of life, depending on disease trajectory. The second interview section was semistructured, beginning with a graphic depiction of who would be important at the EoL (i.e., participants’ social networks; beyond the scope of this article and reported on elsewhere ( Tishelman et al, 2019) ). Thereafter, the translated and adapted Swedish version of GoWish cards ( Menkin, 2007 ), the DöBra cards, were used to reflect on and discuss what was important, in terms of values and preferences for future EoL care (see Tishelman et al, 2019 for description of development and initial testing of this protocol).…”

“…The English-language GoWish cards were originally developed in the United States ( Menkin, 2007 ), based on Steinhauser and colleagues’ research (2000) about EoL issues deemed most important by different stakeholder groups. The cards were, with granted permission from the originators ( www.codaalliance.org ), translated, and adapted to the Swedish context by the project group collaboratively in a series of meetings ( Tishelman et al, 2019 ). The finalized Swedish DöBra cards consist of 37 preformulated items of potential importance at the EoL, for example, “ to be free of pain,” “ not dying alone,” “ to have my financial affairs in order ,” and “to pray.” In addition, there are three “wild cards” for matters of individual importance not covered by the preformulated items (see Supplementary Material for full listing of items).…”

“…M.E., who had conducted 45 of the interviews, listened and reread the full database comprised of all 60 interviews with 65 participants in an effort to gain an initial understanding of the content of each and the data as a whole. Given the unusually large database for qualitative analysis, necessary for other aspects of the SweACP project ( Tishelman et al, 2019 ), a process of stepwise purposive sampling ( Flick, 2014 ; Forss, Tishelman, Widmark, & Sachs, 2004 ) was undertaken in which a subsample of interviews was selected for more in-depth analysis based on the following criteria. First, eight interviews deemed as deviant or outliers in relation to reasoning, experiences, or opinions were included.…”