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

Abstract

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.

Addressing Patient-Reported Barriers to Advance Care Planning in Family Practice

“…[21,45,46] In addition, the belief that patients' family members will know the patient's wishes is not uncommon. [16,45] Yet the presence of decisional conflict and regret is known to be high in family members of critically ill patients [47] and negative emotional burden [48] and burden of decision-making is lower when ACP has been undertaken [49]. Our study shows similar finding but provides new insights into the role r family physicians in engaging and educating patients about the importance of ACP as it may pertain to the involvement of others in decisions about their health care.…”

“…[13] Prior engagement in ACP has been shown to improve patient and family experiences with healthcare near the end of life, resulting in greater concordance between patient wishes and the healthcare they receive, as well as lower stress and depression among family members. [14,15] The public tends to think of ACP as only the process of creating a written advance directive for future health care [16]. These advance directives tend not to be used by clinicians, [17][18][19] and patients creating them tend to lack important knowledge relating to the treatment options described.…”

Exploring Patient-Reported Barriers to Advance Care Planning in Family Practice

“…Education on effective resources already developed, such as the "Just Ask" tool [38] and "Speak Up" [38,39] Previous work revealed that patients did not perceive ACP as relevant to them because they were healthy [21] and that the topic brings up difficult emotions among people with whom they have relationships such as family. [21,42,43] In addition, the belief that patients' family members will know the patient's wishes is not uncommon [16,42] despite evidence that family carers are often unaware of patient preferences. [44] In addition, the presence of decisional conflict and regret is known to be high in family members of critically ill patients [45] and negative emotional burden [46] and burden of decision-making is lower when ACP has been undertaken [47].…”

Exploring Patient-Reported Barriers to Advance Care Planning in Family Practice

“…Previous work revealed that patients did not perceive ACP as relevant to them because they were healthy [21] and that the topic brings up difficult emotions among people with whom they have relationships such as family. [21,42,43] In addition, the belief that patients' family members will know the patient's wishes is not uncommon [16,42] despite evidence that family carers are often unaware of patient preferences. [44] In addition, the presence of decisional conflict and regret is known to be high in family members of critically ill patients [45] and negative emotional burden [46] and burden of decision-making is lower when ACP has been undertaken [47].…”

“…[13] Prior engagement in ACP has been shown to improve patient and family experiences with healthcare near the end of life, resulting in greater concordance between patient wishes and the healthcare they receive, as well as lower stress and depression among family members. [14,15] The public tends to think of ACP as only the process of creating a written advance directive for future health care [16]. These advance directives tend not to be used by clinicians, [17][18][19] and patients creating them tend to lack important knowledge relating to the treatment options described.…”