Honoring patient preferences is a keystone of high-quality end-of-life (EOL) care. An important pathway to improve the likelihood of preference-concordant care at EOL is advance care planning (ACP), which has been shown to align treatments with documented patient preferences, as well as have other benefits to quality of care and survivor outcomes. Discussions in which patients express their wishes for EOL care are known as informal ACP (IACP). Most research to date has focused on formal (legal) ACP, or on ACP in older adults exclusively. In contrast, little is known about early IACP: discussions of EOL care preferences that take place in healthy middle age and older people, who are not yet facing imminent health threats. This study will used a mixed methods approach to characterize and document the prevalence of IACP conversations in healthy middle age (55-64) and young-old adults (65-74), focusing on the content and triggers of conversations, describing conversation partners, and identifying the extent to which IACP conversations overlap with other types of age-related planning, such as retirement planning. By focusing on middle age and young-old adults, this research will explore how IACP conversations begin and develop over time, and how health care planning is or is not similar to other conversations or planning people make for older age. Findings may inspire novel interventions to boost rates and quality of IACP, an important pathway to improving EOL care.
This exploratory R21 will document the characteristics, content, and prevalence conversations about end-of-life health care preferences reported by middle aged and young-old adults. This research will also explore the overlap between different types of age-related planning, such as financial planning, with advance care planning for health care. Understanding how and why individuals engage in end-of-life health care discussions may support the development of interventions to increase rates of these important but difficult conversations.
