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

Abstract

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.

A model for community-led peer-facilitated advance care planning workshops for the public

“…In alignment with this, other ACP interventions that have emphasized conversation, for example, by using cards or games, have been reported. 8,20 While it is not surprising that most of the organizations that adopted our model were Hospice Societies (19/22), 7,21 it is important to note that Hospice Societies are not the only type of community organization suitable for implementing this model. For instance, church-based models have been described as effective in community-led ACP education initiatives.…”

“…That has led to increasing recognition of the role of non-clinicians, such as community members, in ACP facilitation. [7][8][9][10] These community-led ACP initiatives hold great potential in increasing public awareness and engagement, leading to a much-needed culture shift that makes ACP engagement the norm for everyone. 10 In the Canadian province, British Columbia (BC), two community-based organizations, Comox Valley Hospice Society (CVHS) and the Community Engagement Advisory Network (CEAN) within Vancouver Coastal Health Authority, have emerged as leaders in community-led ACP education.…”

Who should talk with patients about their end-of-life care wishes? A nationwide survey of the Hungarian population

“…Community-based ACP interventions (e.g. DöBra cards in Sweden [ 30 ]) may also benefit families who are uncomfortable talking about EOL issues. Evidence has shown that it was easier for physicians to initiate ACP discussions with informed patients and relatives [ 9 ].…”

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

“…Games have been shown to lower reluctance and resistance when discussing potentially uncomfortable topics such as death, dying, and end-of-life care [6] and can thus be helpful in supporting individuals in thinking and talking about ACP and end-of-life values and preferences. One card game that has shown positive results in stimulating discussion in various studies is the American Go Wish card game (developed the mid 90s by Coda Alliance, a U.S.-based non-profit organization) [7][8][9][10][11][12][13][14][15][16][17][18]. The card game consists of preformulated statements to initiate and support ACP discussions by identifying values and preferences about end-of-life issues and death and dying.…”

“…The Go Wish cards have been tested in the United States, e.g., with patients on inpatient services [13] and with patients with mild cognitive impairment [11]. Moreover, the Go Wish game has been translated and adapted from its source context to use in other groups, e.g., with parents of children with a life-threatening illness [14], as a teaching tool with medical students [10] and in other cultures, e.g., in Sweden, France, China [7,8,[15][16][17][19][20][21][22][23][24].…”