Implementing advance care planning in Swedish healthcare settings - a qualitative study of professionals' experiences.

BACKGROUND: Advance care planning (ACP) is a process involving conversations about values and preferences regarding future care at the end-of-life. ACP has led to positive outcomes, both in relation to quality of life and with increased use of palliative care, less life-sustaining treatment and fewer hospital admissions. Sweden has yet to embrace the practice systematically, but scattered initiatives exist. AIM: To study implementation of a routine for ACP in NH settings in Sweden by exploring healthcare professionals' experiences of engaging in ACP following this implementation. METHODS: The study followed a qualitative inductive design with convenience and snowball sampling. Semi-structured group and individual interviews with registered healthcare professionals were analysed using qualitative content analysis. FINDINGS: Organisational support for sustainable ACP implementation was found to be essential. This included sufficient training, facilitation, collaboration and uniform work routines across providers and professionals. Engaging in ACP conversations following the implemented routine was found to be a process of preparing, being, talking, deciding and sharing. CONCLUSIONS: Successful implementation of ACP in NHs requires a carefully planned implementation strategy. ACP in NHs tend to be medically focused at the expense of residents' psychosocial care-planning needs. Widespread uptake of ACP in Sweden could be useful in the national effort to adopt more person-centred care in Swedish healthcare.KEY POINTS While advance care planning has been implemented in many other countries, Sweden lacks a national strategy on advance care planning and Swedish healthcare settings have yet to systematically implement this practice. • This study is the first to report on professionals' experiences of engaging in sustainable advance care planning, following top-down implementation of the practice in one Swedish region. • Successful implementation of advance care planning in nursing homes requires a system-level approach, and shortcomings of the implementation process are highlighted.

The cultural adaptation of the go wish card game for use in Flanders, Belgium: a public health tool to identify and discuss end-of-life preferences.

BACKGROUND: Public health tools like the Go Wish card game from the US, have been found useful to support people in reflecting on their end-of-life preferences, but a cultural adaptation is essential for their success. In the present study, we explore the necessary cultural adaptations to the Go Wish cards by applying an extensive, systematic, and community-engaging negotiating procedure to facilitate the use of the cards in the general population of Flanders, Belgium. METHODS: We used an iterative cultural adaptation process with repeated discussions with various community organizations and representatives of minority and religious groups. After that, the cards were evaluated by 12 healthcare professionals in relation to: linguistic equivalence to the original version, applicability, comprehensibility, and relevance per card. Additional testing with potential users preceded final adjustments. RESULTS: We found that stakeholders were keen to engage throughout the process of cultural adaptation and we were able to make a range of cultural adaptations for the use of the cards in Flanders. All original statements were rephrased from passive to more active statements. Sixteen out of 36 cards were adjusted to make them more culturally appropriate for use in Flanders, e.g., "to meet with clergy or a chaplain" to "having a spiritual counselor as support." Three new cards were added: two with statements appropriate to the Belgian patient rights and euthanasia legislation and one extra Wild Card. Potential users (n = 33) felt that the cards supported conversations about end-of-life preferences. CONCLUSION: By making community engagement a cornerstone of our adaption process, we developed a card set that potential end-users considered a supportive public health tool for reflecting and discussing end-of-life values and preferences. The described process is particularly valuable for culturally adapt interventions, especially given that community engagement in adapting interventions is essential to creating grounded interventions.

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.

Sweden has no systematic advance care planning (ACP), nor legal recognition of end-of-life proxies. We describe our experiences and reflections from a participatory action research process, aiming at developing and initially using a conversation-based, structured ACP approach among community-dwelling, older adults in Sweden. Eco-mapping and DöBra cards were used with 65 people to catalyze discussions on preferences for the end-of-life. We found great individual variation in both Eco-map depictions of social networks and prioritization of the 37 DöBra card items. The DöBra cards were concluded to be a viable tool for stimulating person-centered conversations on preferences for future end-of-life care.

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

INTODUCTION: 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. AIM: 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. METHODS: This qualitative study is based on interviews with 31 self-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. FINDINGS: 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. CONCLUSIONS: 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.

Same, same, but different? A longitudinal, mixed-methods study of stability in values and preferences for future end-of-life care among community-dwelling, older adults.

BACKGROUND: End-of-life preferences may change over time, e.g. due to illness progression or life events. Research on stability of end-of-life preferences has largely focused on life-sustaining treatments in seriously ill patients or medical decision-making based on hypothetical illness scenarios and possible treatment options. Few studies focus on community-dwellers in natural settings. The aim of this study was thus to explore if and how community-dwelling, older adults' prioritizations and reasoning about values and preferences for future end-of-life care change over time. METHODS: Using a mixed-methods design, we explored stability of end-of-life preferences in older community-dwelling adults without imminent end-of-life care needs. At two timepoints (T1 and T2), 5.5-12 months apart, 52 individuals discussed what would be important to them at the end-of-life, through open conversations and while using DöBra cards, a Swedish version of GoWish cards. Participants ranked their most important card statements from 1 to 10. Stability in card rankings, i.e. a card recurring in the top-10 ranking at T2 regardless of position, was explored using descriptive statistics and non-parametric analyses. Participants' reasoning about card choices were explored with longitudinal qualitative analysis. RESULTS: Stability between T1 and T2 in the top-10 priorities ranged from 20 to 80%, median 60%. Stability in cards rankings could not be explained by changes in participants' health status, extent of card use (no/little/frequent use) between interviews, or days between T1 and T2, nor was it related to demographic variables. Qualitative analysis showed that consistent reasoning was not always paired with consistency in card choices and changed card choices were not always related to changes in reasoning. CONCLUSIONS: Longitudinal exploration combining DöBra card rankings with underlying reasoning about end-of-life preferences over time furthers knowledge on the dynamics between values and preferences in end-of-life decision-making. Individuals' end-of-life preferences in form of card choices were relatively stable over time albeit with large variation between different individuals. However, the values and underlying reasoning that participants used to motivate their choices appeared more stable than ranking of card choices. We thus conclude that concurrent conversation-based exploration is a more comprehensive indicator of end-of-life values and preferences over time than ranking of cards alone.

Dissemination, use, and impact of a community-based, conversational advance care planning intervention: ripple effects of the Swedish DöBra cards.

INTRODUCTION & AIM: Despite increasing interest in community-based advance care planning interventions, few studies investigate the societal impact of such initiatives. The DöBra cards, a Swedish adaptation of the GoWish cards, were first used for advance care planning conversations in a participatory action research project and later, due to popular demand, made available for purchase by the general public. We explore how the DöBra cards were disseminated and used publicly, to understand their impact in the community. METHODS: We used Ripple Effects Mapping to follow three dissemination ripples, based on interviews with 20 participants, analyzed with directed content analysis. FINDINGS: Key factors influencing dissemination of the DöBra cards included 'champions' with a mandate within their context or organization, policy documents including use of the cards, media coverage, and presentations of the cards in various settings. The DöBra cards were adapted for use individually and in groups in different private, professional, and organizational settings. Perceived benefits of the cards included acting as an icebreaker in initiating end-of-life conversations and having preformulated statements to reflect upon. Other positive experiences included discussions on different interpretations of card statements, thus opening new perspectives regarding end-of-life. The DöBra cards functioned both as means to raise end-of-life issues in different contexts, and as an end in themselves, for example, by facilitating advance care planning conversations for those with serious disease. Impact also included personal development and strengthening of private and professional relationships, with potential to affect end-of-life care. CONCLUSION: The broad dissemination of the DöBra cards influenced capacity-building in dealing with end-of-life issues in communities, as the topic of dying and death was brought to agendas in new contexts.

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

BACKGROUND AND OBJECTIVES: There is a substantial body of research on advance care planning (ACP), often originating from English-speaking countries and focused on health care settings. However, studies of content of ACP conversations in community settings remain scarce. We therefore explore community-dwelling, older adults' reasoning about end-of-life (EoL) values and preferences in ACP conversations. RESEARCH DESIGN AND METHODS: In this participatory action research project, planned and conducted in collaboration with national community-based organizations, we interviewed 65 older adults without known EoL care needs, about their values and preferences for future EoL care. Conversations were stimulated by sorting and ranking statements in a Swedish version of GoWish cards, called the DöBra cards, and verbatim transcripts were analyzed inductively. RESULTS: While participants shared some common preferences about EoL care, there was great variation among individuals in how they reasoned. Although EoL preferences and prioritizations could be identical, different individuals explained these choices very differently. We exemplify this variation using data from four participants who discussed their respective EoL preferences by focusing on either physical, social, existential, or practical implications. DISCUSSION AND IMPLICATIONS: A previously undocumented benefit of the GoWish/DöBra cards is how the flexibility of the card statements support substantial discussion of an individual's EoL preferences and underlying values. Such in-depth descriptions of participants' reasoning and considerations are important for understanding the very individual nature of prioritizing EoL preferences. We suggest future users of the DöBra/GoWish cards consider the underlying reasoning of individuals' prioritizations to strengthen person-centeredness in EoL conversations and care provision.