Presentations & Publications

Black older Americans are more likely to desire and receive aggressive medical treatments at the end of life, relative to their white counterparts. This disparity is usually attributed to individual or cultural factors, such as family decision making strategies and spiritual beliefs. These explanations fail to consider prior experiences with healthcare providers and healthcare system earlier in the life course, which are likely to shape decision-making at the end-of-life. This study uses the 2018 wave of the Health and Retirement Study experimental module, which collected data on end-of-life preferences from a subset of the core sample. We use multinomial regression models and Kitagawa-Oaxaca-Blinder decomposition to evaluate the relative contributions of individual characteristics and prior experiences of healthcare marginalization on treatment preferences. After controlling for covariates, we find that perceived health care discrimination accounts for significant differences between Black and White American’s preferences for wanting more aggressive treatments. Our study provides compelling novel evidence that preferences for care at the end-of-life are shaped both by individual characteristics and experiences of structural exclusion over the life course.

Sharing healthcare preferences with others reduces the likelihood of unwanted treatments at the end-of-life (EOL), a key indicator of a “good death.” Spouses and other romantic partners are key facilitators of EOL planning decision-making, but little is known about the role of broader social networks, which may be particularly important for people who are single in the final years of their lives. This study investigates the association between emotional support from friends, friendship network size, and informal EOL planning using data from the 2018 and 2020 waves of the Health and Retirement Study (HRS)—a nationally representative sample of U.S. older adults (N=4,728). We use multivariable logistic regression models and evaluate how the association vary by gender and marital status. Our findings reveal that emotional support from friends is differentially related to older adults’ engagement in EOL conversations. Among married, partnered, or previously married individuals, support from friends has no statistically significant effect on the likelihood of EOL discussion. We find evidence of moderation by marital status and gender. Older men with low emotional support are 68% less likely to engage in EOL discussions compared to those with high levels of support. Never married older men with strong emotional support from friends are as likely to have had informal EOL conversations as their married/partnered counterparts. These findings contribute to the literature by highlighting the critical role of high-quality friendships in EOL preparations for never married men.

Advance care planning (ACP) is essential for ensuring a good death, characterized by minimal distress and alignment with the patient’s and family’s wishes. Despite the critical nature of ACP, significant gaps in engagement remain among older adults in the United States, with less than half having completed necessary legal documents or discussed their medical preferences in depth. This study explores how dynamic relationship histories throughout the life course, rather than static marital status, influence ACP behaviors such as the completion of living wills, the designation of durable powers of attorney for healthcare, and participation in end-of-life discussions. Employing a gendered life course perspective, we analyze data from the Health and Retirement Study to examine the cumulative effects of relationship trajectories on ACP engagement and how these effects vary by gender. Our findings suggest that relationship history is a significant, though previously underexamined, social determinant of ACP, offering new insights into the life course factors that shape end-of-life planning.

Background/Context:

Black Americans have long faced structural barriers in accessing high-quality hospice care, often resulting in poorer death quality compared to their White counterparts. While previous research has established the presence of racial inequalities in healthcare access, limited studies have explored how these disparities manifest in death quality and how these death experiences relate to assessments of death quality.

Objectives/Purpose:

This study investigates how the COVID-19 pandemic affected death quality and whether these impacts differed for White and Black decedents. We also evaluate the extent to which hospice and palliative care moderated these associations. Specifically, we hypothesized that pandemic-related disruptions in care led to poorer death quality, with more pronounced effects for Black decedents, and that the presence of hospice or palliative care would moderate these negative outcomes.

Research Approach:

Data are from the Health and Retirement Study (HRS) Core and Exit Interviews conducted between January 2018 and September 2023. Our analytic sample included 2,498 decedents (450 Black, 2,048 White). Multivariable OLS and logistic regression models were used to estimate the associations between race, hospice use, and our two EOL experience outcomes.

Relevance:

Proxies for Black decedents reported higher perceived death quality than those for White decedents, despite evidence of greater structural disadvantage. However, perceived care concordance was significantly lower among Black decedents. Hospice care was associated with improved perceived death quality for Black decedents but not for Whites. When accounting for socioeconomic and death experience controls, hospice care did not moderate perceived care concordance. Our findings highlight the importance of considering expectations, context, and reference group comparisons when interpreting subjective EOL measures. Expanding equitable access to high-quality hospice care may help reduce persistent racial disparities, but interventions must also address how care is experienced, evaluated, and aligned with individual preferences.

Originality:

This study is among the first to use HRS data to assess subjective death quality through proxy-reported evaluations and investigate differences in death quality based on race. It provides novel insights into the relationship between race, healthcare utilization, and subjective death quality experiences.

Relevance to Conference Theme:

By investigating the impact of hospice care on death quality this study aligns with the conference theme. Our findings demonstrate the necessity of targeted interventions to reduce health disparities and ensure high-quality, patient-centered care for all populations.

Funding: The Robert Wood Johnson Foundation Evidence for Action Grant.

Background/Context: Despite the expansion of end-of-life services in the United States, there remains an unmet need among older adults for advance care planning (ACP) and hospice. Prior literature has identified inadequate end-of-life counseling and limited ACP education as barriers to end-of-life planning and decision-making. This work has failed to investigate how physicians’ and caregivers’ perceptions of care barriers translate to unmet needs for ACP and end-of-life services. Moreover, patient-physician communication may be complicated by the emotional toll of care at the end of life, which may exacerbate discrepancies in perspectives.

Objectives/Purpose: To assess the perceptions of barriers to end-of-life care by physicians and informal caregivers of recent decedents and examine the implications of the potential differences in these perspectives on care delivery. 

Research Approach: We conducted three focus groups with physicians who routinely provide care at the end of life and two focus groups with former informal caregivers of recent decedents. We recruited participants through in-person flyers, social media advertisement, and partnerships with local social service organizations. Physician focus groups were conducted over Zoom, while caregiver focus groups were conducted in-person. All groups were led by a trained focus group leader, audio-recorded, and professionally transcribed. Data was analyzed using NVivo with a constructivist grounded theory approach. 

Results: Physicians and caregivers held differing perspectives on the barriers to end-of-life care, with physicians emphasizing cost as a significant barrier for patients, overlooking the interpersonal and informational barriers most commonly reported by caregivers. Physicians did not evaluate similarly the quality of interactions about end-of-life care, with caregivers reporting dissatisfying experiences and a lack of attention to the emotional toll they experienced. These misaligned perspectives regarding the quality of end-of-life care interactions prevented patients and caregivers from pursuing or enacting ACP, and sometimes led to the provision of care that caregivers believed was not concordant with their loved ones’ wishes.

Relevance: Insights from this study will guide future policy recommendations to reduce barriers to end-of-life care that may be driving unmet needs in advance care planning and hospice use. 

Originality: This study is among the first to directly contrast physician and caregiver perspectives on barriers to end-of-life care and reveals how misalignment in perceived obstacles can disrupt care planning and delivery. Our study directly compares the perspectives of healthcare providers and caregivers, identifies points of divergence in their perceptions, and assesses the implications of this misalignment on ACP and end-of-life care. 

Culturally Sensitive Palliative Practices: Culturally sensitive palliative care must consider experiences of healthcare marginalization and barriers to care to ensure that all patients receive compassionate, goal-concordant care at the end of life.  

Funding: The Robert Wood Johnson Foundation Evidence for Action Grant.

Patients who engage in advance care planning (ACP) are able to better communicate their end-of-life treatment preferences and help ensure that they experience a death that is aligned with their wishes. However, there are stark racial disparities in the use and effectiveness of ACP leading to lower-quality deaths for Black and Hispanic Americans. In 2016 the Centers for Medicare and Medicaid Services (CMS) began reimbursement for physicians discussing ACP with their patients. Using HRS core and exit survey data, this study investigates whether these policy changes led to a change in racial disparities in end-of-life quality and planning. We found that race disparities in ACP were large and remained large throughout the 2012-22 study period. Surprisingly, we found that racial disparities in death quality increased after the implementation of the 2016 Medicare policy. We discuss study implications for policy, practice, and research.