Advance care planning in community dwellers: A constructivist grounded theory study of values, preferences and conflicts

• Published in: Palliative medicine Vol. 33; no. 1; pp. 66 - 73
• Main Authors: Taneja, Ravi, Faden, Lisa Y, Schulz, Valerie, Rawal, Asha, Miller, Kristina, Bishop, Kristen A., Lingard, Lorelei
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.01.2019; Sage Publications Ltd
• Subjects: Acute services; Advance directives; Care plans; Clinical decision making; Clinical outcomes; Decision makers; Decision making; Functional impairment; Grounded theory; Hospitalization; Intervention; Medical personnel; Older people; Qualitative research; Sampling; decision-making; resuscitation; Advance care planning; terminal care; substitute decision maker; end-of-life care; intensive care units
• ISSN: 0269-2163; 1477-030X; 1477-030X
• DOI: 10.1177/0269216318803487

Background: Most laypeople have not engaged in any advance care planning. Yet they are expected to articulate choices for life-sustaining interventions when they need admission to an acute care hospital in Canada. Aim: To describe how laypeople understand and make decisions for life-sustaining interventions when engaging in advance care planning. Design: Semi-structured interviews using constructivist grounded theory methodology and purposive sampling. Setting: Mid-size Canadian urban community Participants: In total, 20 healthy laypeople, 55 years and older, participated in in-depth semi-structured face-to-face interviews. Theoretical sampling was used to explore findings from the first round of interviews. Ten participants were invited for repeat interviews. Results: Four major themes were identified. Most participants claimed at the outset that they had engaged in advance care planning, but they were unfamiliar with contemporary life-sustaining interventions and had not factored these into their decisions. Participants’ confidence in their substitute decision makers precluded them from having explicit discussions with these individuals. Participants expressed their values and preferences in terms of unacceptable functional outcomes from serious illness, rather than desired interventions. The process of articulating their preferences within the interviews was subject to decision conflicts, which in turn helped them re-evaluate and refine their decisions. Conclusion: Advance care planning for the healthy older adult is challenging. Meaningful engagement may lead to conflicts in decision-making. Efforts to improve engagement must reflect what patients know and understand, their focus on unacceptable negative outcomes rather than interventions, and the need for iterative discussions with health-care providers.