Advance Care Planning (ACP) is crucial, especially within long-term care (LTC) settings, to ensure residents’ wishes are honored. To explore how to best facilitate these important conversations, focus groups were conducted with staff in LTC facilities to gather insights on the usability and desired features of Advance Care Planning Tools. This article delves into the findings from these focus groups and a subsequent content analysis of existing ACP tools, highlighting key elements that make these tools effective in guiding staff, families, and residents through the ACP process.
Key Features of Effective Advance Care Planning Tools in Long-Term Care
Focus groups brought together 32 staff members from various LTC facilities, including clinical and non-clinical roles, to discuss their perspectives on advance care planning. Participants consistently emphasized that while there was some uncertainty regarding the ideal timing and initiators of ACP discussions, they recognized the potential of well-designed advance care planning tools to significantly aid these conversations. The discussions highlighted several key features crucial for the usability and effectiveness of advance care planning tools in the LTC environment.
Informative and Directive Content
Staff underscored the importance of advance care planning tools that are not only informative but also directive. These tools should clearly articulate the significance of ACP, define the roles of decision-makers, and offer practical examples and scenarios to encourage thoughtful consideration. Including prompting questions to guide discussions was also deemed essential for facilitating productive conversations among staff, residents, and families.
Participants noted that tools should “create an incentive” by explaining the potential consequences of not having an advance care plan, thereby increasing awareness of its importance. Furthermore, tools offering “good ways to start a conversation” and “specific examples and prompts” were considered particularly valuable. These features provide staff with the necessary support to initiate sensitive discussions and offer structure to elicit meaningful reflection and dialogue. Examples of effective prompts included asking residents to identify their top end-of-life preferences for their families or to consider their comfort level with spending their final days in a hospital. The key is striking a balance between specificity and open-endedness to stimulate genuine thought and conversation.
Psychosocially Focused Approach
A critical insight from the focus groups was the need for advance care planning tools to extend beyond a purely medical focus. While medically oriented tools may align with charting requirements, participants felt they were insufficient for comprehensive care in LTC. These tools often necessitate physician or nurse involvement and overlook crucial psychosocial aspects relevant to LTC residents.
As one participant poignantly stated, key concerns in LTC frequently revolve around psychosocial issues: “I don’t want to die by myself, I don’t want to die alone, I want to be at the home, I don’t want to be a burden on my family.” Therefore, incorporating psychosocial aspects into advance care planning tools is paramount. This broader approach expands the involvement of various professionals in ACP implementation and addresses topics of utmost importance to residents and their families. Relevant psychosocial topics identified included preferences regarding family involvement, beliefs about quality of life and death, desired environmental conditions, and religious or spiritual preferences. Integrating these elements ensures a more holistic and person-centered approach to advance care planning.
Flexible Options and User-Friendly Formats
Recognizing the diverse needs within LTC, focus group participants emphasized that a single, universal advance care planning tool is unlikely to be suitable for all residents. Instead, they advocated for a selection of tools or a modular approach, allowing for personalization. As one participant suggested, it’s about “see[ing] the needs of a particular [resident or] family and choos[ing] one out of two or three favourite resources.”
Regarding format, a strong preference emerged for paper-based tools. Participants consistently stated, “Hard copies have to be available,” to overcome barriers related to computer access and digital literacy. Additionally, the length of the tools is a significant factor. Tools perceived as too lengthy were considered overwhelming for residents, families, and staff, highlighting the need for concise and manageable resources. Moderate length and readily available hard copies are crucial for maximizing the usability of advance care planning tools in LTC settings.
Content Analysis of Advance Care Planning Tools
To further understand the landscape of available resources, a content analysis was conducted on a large sample of identified advance care planning tools. An initial keyword search identified 611 tools. After applying specific criteria to refine the selection, 32 advance care planning workbooks were retained for in-depth content analysis. The selection process prioritized paper-based tools with a broader scope than solely medical directives.
Readability, Formatting, and Psychosocial Focus
The reviewed tools exhibited considerable variation in length, ranging from 3 to 102 pages. While most incorporated visual elements such as photos or graphics (67%), and used vignettes or case scenarios to promote reflection (56%), a significant portion (34%) exceeded 25 pages in length, potentially impacting usability.
A positive finding was the strong emphasis on psychosocial content within the majority of tools. Nearly all (94%) encouraged some form of psychosocial reflection, prompting users to consider their values, beliefs about death and dying, and what gives life meaning. Questions like “What are your values and beliefs about death and dying? … What does suffering mean and what makes life worth living?” were common examples aimed at uncovering fundamental perspectives to guide future decision-making.
Specific psychosocial reflections on end-of-life preferences were also frequently included. Location of death was addressed in 84% of tools, with prompts such as “If possible, would I prefer to die at home, in a hospice or in the hospital? What might change my mind about my choice?”. Furthermore, 69% of tools prompted reflection on comfort measures and preferred company during final days, using questions like “If you could plan it today, what would the last day of your life be like? … What would you be doing? Who would be with you?”.
Communication and Documentation of Psychosocial Preferences
All analyzed tools recognized the importance of communication, emphasizing sharing reflections with families, friends, healthcare professionals, and substitute decision-makers. A large majority (84%) encouraged users to consider selecting a substitute decision-maker. However, fewer tools provided practical guidance on how to initiate these crucial conversations.
Only 44% offered tips for starting conversations with loved ones, 41% advised on discussing the substitute decision-maker role, and a mere 22% provided direct guidance for substitute decision-makers. When communication tips were offered, they were often general, such as suggesting finding the “right time” or using opening prompts like “I need to think about the future. Will you help me?”. Even fewer tools (17%) specifically prompted users to discuss their psychosocial end-of-life preferences, with examples like “…tell your SDM(s), family and friends: what is important to you at the end of your life … music you want to listen to, books you want to read or have read to you …”.
Documentation of psychosocial directives was notably infrequent. Despite the emphasis on psychosocial content, only 22% of tools offered a formal mechanism to document these preferences. Tools with documentation components enabled users to formalize their reflections into actionable directives, such as “I wish to have religious readings and well-loved poems read aloud when I am near death” or “I want X at my bedside [at end of life]: … [I] want someone to hold [my] hand”. While not always legally binding, this documentation process ensures that psychosocial preferences are translated into tangible wishes to be considered in end-of-life care.
Conclusion
This analysis underscores the critical need for user-friendly and comprehensive advance care planning tools tailored for long-term care settings. Effective tools should be informative, directive, and, crucially, psychosocially focused. They should facilitate meaningful conversations, encourage reflection on personal values and preferences, and ideally provide a mechanism for documenting these wishes. Furthermore, accessibility through paper-based formats and concise design are vital for maximizing usability among residents, families, and staff in long-term care. By incorporating these key features, advance care planning tools can significantly enhance the quality of care and ensure that the voices and preferences of LTC residents are honored throughout their care journey.
