Making Visible a Theory‐Guided Advance Care Planning Intervention

Advance care planning is defined as a process in which patients and family members (or surrogate decision makers) anticipate and discuss future health states and treatment options (Kolarik, Arnold, Fischer, & Tulsky, 2002). Early efforts in advance care planning were focused on helping patients to make decisions about endof- life care in advance and to document those decisions (Houben, Spruit, Groenen, Wouters, & Janssen, 2014). More recently, efforts are evolving away from a focus on making decisions in advance and instead are focused on preparing surrogates to make in-the-moment judgments (Sudore & Fried, 2010).Numerous interventions to improve advance care planning and end-of-life communication have been tested over the past decades (Daly et al., 2010; Luckett et al., 2014; Scheunemann, McDevitt, Carson, & Hanson, 2011). However, it is difficult to find details about those interventions in research reports, including published study protocols. As a consequence, much of the information necessary for replication research and translation in clinical settings is inaccessible (Conn, 2012; Glasziou, Meats, Heneghan, & Shepperd, 2008; Hoffmann, Erueti, & Glasziou, 2013). This problem is far more common in reports of nonpharmacological (e.g., psychosocial and educational interventions) studies than in drug trials and has been recognized as a serious barrier to moving the science forward, improving the efficiency of research funding, and promoting the uptake of research findings in clinical practice (Conn, 2012; Glasziou et al., 2008). The purpose of this article is to provide details of a theory-guided advance care planning intervention, sharing the patient's illness representations to increase trust (SPIRIT), designed to prepare patients with serious illness and their chosen surrogate decision makers for end-of-life decision making.The SPIRIT InterventionThe following description of SPIRIT relies on an intervention description checklist by Conn (2012), the Intervention Taxonomy (ITAX) from Schulz, Czaja, McKay, Ory, and Belle (2010), and relevant segments of Consolidated Standards of Reporting Trials (CONSORT). Table 1 presents a summary of the SPIRIT intervention using ITAX.Initial Development and TestingThe SPIRIT intervention has arrived at its present form through several studies (Song, Donovan, et al., 2010; Song, Kirchhoff, Douglas, Ward, & Hammes, 2005; Song et al., 2009). Initially, the intervention was tested and found efficacious with non-Hispanic Caucasians with serious heart disease (Song et al., 2005). Then two pilot studies were conducted to evaluate the applicability of the intervention to other racial/ethnic populations with serious kidney disease (Song, Donovan, et al., 2010; Song et al., 2009). These two studies enrolled African Americans on chronic dialysis and their surrogates.While initial efficacy was demonstrated in these pilot studies, participants' feedback about the intervention revealed that it needed to be more sensitive to African Americans and their culture in that the intervention should address spiritual or religious concerns about illness and end-of-life care and that care should be taken to use language that would be understandable for people with fewer years of formal education. The intervention was modified to address these concerns and then tested in a randomized controlled trial (RCT) where SPIRIT was superior to usual care in improving preparation for end-of-life decisionmaking and bereavement outcomes (Song et al., in press.GoalsThe SPIRIT intervention was designed to prepare patients and chosen surrogate decision makers for endof- life decision making with the following components: (a) assisting the patient in surrogate determination, (b) two sessions of a theory-guided SPIRIT discussion to enhance communication about end-of life care between the patient and chosen surrogate and to prepare surrogates for surrogate decision making, and (c) documenting the patient's end-of-life care preferences and surrogate designation and communicating them to the treating healthcare providers. …