Understanding Knowledge and Perceptions of Cost as Barriers to Advance Care Planning 

Authors: Gretchen Agans, Hannah Hadley and Anisah Bagasra Presented at SEPA 2025

   Public engagement in ACP and AD completion has been consistently low. It is critical to acknowledge that ACP is a health behavior (Fried, et al., 2009) that changes over time (Sudore, et al., 2017) and is subject to the critical assumption that without consistent and intentional interventions, most people will be unable to progress though the stages of change (Prochaska & Velicer, 1997). In 2016, the Centers for Medicare and Medicaid Services (CMS) supported the creation of systemic ACP services when it authorized reimbursement with no cost sharing for ACP services that were provided by doctors or other qualified health professionals on the same date as the patient’s annual wellness visit.  

A 2020 study by Gupta, et al. analyzed the 2017 decedents who had been receiving Medicare coverage. A random sample of 20% (n=237,989) found that only 6.3% (n=14,986) had engaged in ACP services in a clinical setting, as evidenced by the application of CPT® code 99497. However, there was a significant impact in healthcare utilization during the last 30 days of life based on six categorical standards endorsed by the National Quality Forum. Those individuals were significantly less likely to 1) die in a hospital, 2) be admitted to a hospital, 3) visit an emergency department (ED) or 4) be in an intensive care unit within the last 30 days of their life. There was not a significant difference in 5) the engagement of late hospice care, or 6) total mean expenditures. 

Our 2022 pilot study showed that only 0.04% (n=1) of participants thought that they could receive ACP services from their doctor, while 69.23% (n=18) of participants thought they would need to hire a lawyer. Additionally, 53.84% (n=14) thought that completing an AD would cost between $200 to over $1000. None of the participants knew that the out-of-pocket costs were available at no cost for people over 65 or as low as their health insurance co-pay which is between $16 and $85. This exploratory study  assesses the public’s expectation of out-of-pocket cost for ACP services, including the completion of an AD. We expect to find public perception of cost will be high and positively correlated with the understanding that lawyers would be the most appropriate professional to assist with ACP and AD completion. 

Current data collection focuses on a convenience, snowball sample of United States residents, who were over the age of 18 with internet access. Participants were recruited online to complete an anonymous survey consisting of 35 questions; eight measure demographics, eleven record their opinions about advance care planning and advance directives; and 14 questions were from Templer’s Death Anxiety Scale (DAS; 1970). Findings support the previous focus group study in regard to low to moderate knowledge of what advance care planning is and how advanced directives are defined. Death Anxiety Scores were moderate for the sample and there was no correlation between death anxiety and knowledge. Initial analysis also suggests continued misunderstanding regarding the cost of advanced directives, the time required to complete them, and the need to use a professional such as a lawyer to complete the AD, suggesting these continue to be a persistent barrier to engaging in the advance care planning process.

Barriers to Establishing a Health Care Proxy

Author: Gretchen Agans -Presented at the NCUR Conference 2022

Advance Care Planning (ACP) is an umbrella term for learning about and communicating one’s health care preferences during medical emergencies and the end-of-life season when an otherwise autonomous adult cannot speak for themselves. Completing an advanced directive (AD) is typically the goal of ACP because it is the document that formally authorizes and instructs others to act on behalf of the author. The AD usually has four parts. Part one allows the author to appoint a health care agent. Part two is the living will where the author states their health care preferences. Part three nominates the author’s guardian in the event one is needed. Part four is for signatures of the author and their witnesses.

The foundation for ACP was created by the Patient Self-Determination Act (1990), however, public participation has been consistently low. Why are individuals so reluctant to engage in ACP and to complete their AD? Past studies have focused on correlations between ACP and patients with life-limiting diseases such as cancer, kidney disease, multiple sclerosis, etc. Additional studies have sought to understand the relationship between ACP and other demographic identifiers including religiosity, ethnicity, education, or economic status. Some researchers have concluded that lack of ACP knowledge inhibits engagement. In contrast, other researchers claim that knowledge and self-efficacy have no significant effect on whether people will complete an AD.

This pilot study investigated  laypersons’ understanding of ACP and their expectations when there was no legal health care plan or proxy in place. Twenty-six subjects participated in online, focus group discussions about these topics. Findings include low levels of understanding of ACP and AD and high levels of concern about conflict. The findings were notably different than expected.

Death Anxiety and Advance Care Planning in Hospice and Funeral Workers

Authors: Cathy Powell, Elise Klepal, Quinn Agans, and Anisah Bagasra

Presented at SEPA 2025

This study addresses a significant gap in the literature regarding advance care planning (ACP) among hospice and funeral home employees. These workers are frequently exposed to end-of-life scenarios, but little research has explored their engagement with ACP practices. The primary goal of this research is to examine whether hospice and funeral home employees who have spent more time working in end-of-life care settings are more likely to engage in ACP and report lower levels of death anxiety, examining the impact of job tenure (Melo & Oliver, 2011). Additionally, this study investigates death anxiety across settings by hypothesizing that funeral home employees will report lower death anxiety than hospice workers, as their professional exposure to death is less emotionally intense and direct (Harrawood et al., 2008). Furthermore, the study aims to explore whether the completion of ACP by these professionals correlates with reduced death anxiety, building on previous findings that education and experience in ACP can lower death anxiety levels (Feaster et al., 2023; Stevens et al., 2024). Data collection is currently ongoing, and results will be available for presentation at the conference in April 2025. The study utilizes the Death Anxiety Scale to assess death anxiety levels in hospice and funeral home workers. Surveys are being distributed via email, online platforms, and in person, with participants over 18 recruited from U.S. hospice organizations and funeral homes using a QR code or direct link. In addition to exploring death anxiety and ACP completion, the study will separate those who have completed ACP from those who have not, with only the latter group being asked about perceived barriers to completion, such as financial and time constraints. Ratiu et al. (2022) and Feaster et al. (2023) highlight financial concerns and time constraints as significant barriers to ACP engagement, making these crucial factors to investigate among those who have yet to complete ACP. It is anticipated that employees with longer job tenure will demonstrate higher ACP completion rates and report lower levels of death anxiety. Healthcare workers, particularly those regularly exposed to death, often experience heightened death anxiety, which contributes to burnout and emotional exhaustion (Melo & Oliver, 2011; Ratiu et al., 2022). Melo and Oliver (2011) demonstrate that training and experience in death-related fields, particularly in palliative care, can help reduce death anxiety and improve emotional well-being. Similarly, Harrawood et al. (2008) suggest that attending more funerals is correlated with a lower death anxiety, although embalming bodies does not appear to have the same effect. These findings suggest that not all forms of exposure to death have the same psychological impact, with certain professional tasks potentially providing more emotional resilience than others (Harrawood et al., 2008). Strategies like avoiding thoughts of death can lessen the emotional impact but do not always prevent burnout (Pyszczynski et al., 1999). While avoidance strategies may provide short-term relief, a more proactive approach, such as education and open discussion, may better equip healthcare workers to handle the emotional demands of their roles. Educational programs have helped healthcare workers feel more comfortable discussing ACP, yet it remains unclear whether this leads to increased completion of their own ACP paperwork (Feaster et al., 2023). Structured ACP interventions, such as role-playing and discussions, have improved general practitioners’ engagement in ACP discussions, though time constraints continue to pose significant barriers (Stevens et al., 2024). Fifty Hospice Workers and Funeral Home workers completed the study. Sixty one percent indicated they had a designated healthcare agent, while 39% did not. Reasons reported for not assigning a designated healthcare agent included lack of time, lack of knowledge, lack of urgency to do so, and not having an individual they wanted to designate as a healthcare agent. For those who did not have a healthcare agent 20% were wrong about the cost of completing an advanced directive, and there were varying ideas of the length of time it takes to designate a healthcare agent, with 7.4% assuming it took at least one session lasting more than and hour and 6% assuming it required at least two sessions lasting less than one hour. Death Anxiety did not correlate to having a designate healthcare agent. Hospice workers had a lower score on the Death Anxiety Scale (M=7.1, SD=2.2) and Funeral Home Workers scored slightly higher in Death Anxiety (M=7.45, SD=3.1) though this was not a statistically significant difference. By identifying key barriers such as time constraints, perceived costs, and the readiness of both patients and workers, the study contributes to the development of more effective educational interventions and policy strategies that support healthcare workers in navigating end-of-life care practices.