Values and preferences for future end-of-life care among the indigenous Sámi.

Lena Kroik,Malin Eneslätt,Anette Edin‐Liljegren,Carol Tishelman,Krister Stoor

doi:10.1111/scs.13047

Abstract

Research with Indigenous peoples internationally indicates the importance of socio-cultural contexts for end-of-life (EoL) preferences. However, knowledge about values and preferences for future EoL care among the Indigenous Sámi is limited. We investigated if and how a Swedish adaptation of the English-language GoWish cards, DöBra cards, supports reflection and discussion of values and preferences for future EoL care among the Sámi. This qualitative study is based on interviews with 31self-defined Sámi adults who used DöBra cards at four events targeting the Sámi population, between August 2019 and February 2020. Using directed content analysis, we examined aspects of interviews addressing Sámi-specific and Sámi-relevant motivations for choices. Data about individuals' card rankings were collated and compiled on group level to examine variation in card choices. All 37 pre-formulated card statements were ranked as a top 10 priority by at least one person. The cards most frequently ranked in the top 10 were a wild card used to formulate an individual preference and thus not representing the same statement, and the pre-formulated card 'to have those I am close to around me'. Reactions to interviews varied, with some participants commenting on the taboo-laden nature of discussing EoL issues, although many commented positively about EoL conversations in general, and the benefit of using the DöBra cards in particular. We categorised reasoning about Sámi-specific and Sámi-relevant values and preferences under the themes: Attributes of contemporary Sámi culture, Spirituality, Setting for death, Maintaining identity, Preferences related to death, Dying and EoL care and After death. The DöBra cards were found to be easy-to-use, understandable and a flexible tool for initiating and supporting conversations about EoL values and preferences. The open formulations of cards, with wild cards, enable discussions about individual values and preferences, with potential to reflect life as a Sámi in Sweden.

Highlights

AND AIMThere is limited research about the Indigenous Sámi people in relation to end of life (EoL), in part due to assumptions of a culture of silence on the topic [1]
We have shown how telling stories about Sámi-specific heritage included features that enabled clarification of last wishes, which can be seen as a form of advance care planning (ACP) [2]
Combining our previous experiences of conducting research with the DöBra cards [4, 9, 17, 18] and our research on EoL issues among the Sámi [2, 19], we focus here on investigating the use of the DöBra cards in Indigenous Sámi contexts

Summary

Introduction

AND AIMThere is limited research about the Indigenous Sámi people in relation to end of life (EoL), in part due to assumptions of a culture of silence on the topic [1]. While it is approximated that 40%–45% of Sámi have some knowledge of their Indigenous language, there are no statistics on degree proficiency, it is rarely used as a primary form of communication as virtually all Sámi are at least bilingual [22] It appears that empirical research about the EoL among Sámi in Sweden is limited to that by Kroik et al [19], Ness et al [23] recently emphasised the importance of language and cultural adaptation when providing homecare for elderly South Sámi people. They point out that individual Sámi expectations may differ despite shared cultural background, as noted in their data from 56 older people in Sweden [23]

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