Recent research has found hospice care delivery trends related to social determinants of health, morality and a complex health care system.

Global Home-Based Care Disparities

Despite many individuals’ preferences to die at home, global patient data trends have revealed that this rarely occurs. Limited access and social support are among the prominent barriers.

Social determinants of health, race and geographic location are significant drivers of seniors’ ability to remain in their homes, according to research published in Oxford Academic’s journal Age and Ageing. McGill University researchers analyzed data spanning 55 studies that focused on aging populations in North America, Europe, Australia and the United Kingdom.

Individuals with higher socioeconomic status and greater social resources were more likely to age in place, the research found. But the influence of socioeconomic position, education levels and social resources differs by gender, race, ethnicity, immigration status and rural versus urban setting.

Greater examination of underserved populations and diverse cultures and belief systems is needed to better understand the impacts on home-based support and health disparities, the researchers indicated.

“Social dimensions play an important role in shaping the ability to age in place and reveal important intersectional effects,” they stated. “These insights are critical for efforts to advance equity in aging populations, as failure to consider inequities can exacerbate disparities. Social dimensions that have received limited attention [include] occupation, immigrant status, LGBTQIA+ identity and religion. Additional research on these dimensions is needed to better understand how they influence aging in place.”

Guilt, Shame Drivers in End-of-Life Care Decisions

Guilt and shame are key drivers in end-of-life decision-making processes.

Moral psychological processes were found to be associated with cancer patients’ ability to navigate decisions related to end-of-life care, according to a recent study published in the American Psychological Association’s (APA) journal Health Psychology.

The study examined the experiences of 116 patients with advanced cancer and poor prognosis. Many of the cancer patients indicated that they felt morally obligated to receive potentially nonbeneficial treatment at the end of life in order to make others feel better, versus doing so on their own accord.

“For patients with advanced cancer, moral processes are prevalent and influential on how they behave and make treatment decisions,” the authors indicated in the study. “Attention must be paid to how these moral processes can result in more intensive treatments than warranted.”

Shame, guilt and moral motives were found to have a significant impact on whether individuals receive overtreatment at the end of life, the study found.

Addressing moral psychological processes is important to improving patient emotional well-being and reducing expensive and invasive overtreatment in advanced cancer patients, the study authors indicated.

Health Care Complexities Complicate End-of-Life Trajectories

Patients and families often lack a full understanding of how health care is delivered, paid for and accessed. The trend is leading to disparities in goal-concordant hospice care delivery.

This is according to an analysis from researchers at the University of Wisconsin’s School of Medicine and Public Health and the University of Toronto, which was recently published in the JAMA Network Open.

Certain system-level influences can shape an individual’s care preferences, according to the researchers.

“Influential system-level factors span many different domains: How we are paid, the buildings we work in, the technology around us, who and how many we have on the team caring for patients, our workload and our local social networks of influence,” the researchers stated in the analysis. “Our understanding of these factors and how they shape patient care and outcomes remains rudimentary despite widespread acceptance of their importance.”

Health care systems use a variety of data processes to examine quality and goal-concordant care delivery, according to the analysis. These processes are designed to improve operations of a single hospital or health system and miss the opportunity to build more generalized knowledge that can be examined across wider patient populations, the researchers indicated.

Greater transparency of how health care is reimbursed, regulated and delivered is needed, they stated. For instance, patients, families and clinicians have a limited lens of insight when it comes to the escalation or de-escalation of invasive therapies at the end of life, the analysis found. More research is needed to build a deeper understanding, particularly of how health care systems operate on a daily basis, the researchers stated.

Wider examination of the daily functions and routine clinical care patterns across health care systems can help to develop more systematic innovations that offer more flexible and person-centered support for patients with serious illnesses.

Stronger patient engagement is needed to help with end-of-life decision-making processes, the researchers indicated. But even with high-quality care and frequent communication, several underexplored system factors exist, the analysis found.

“This knowledge gap around system factors is especially large in the field of serious illness and end-of-life care, where the longstanding focus has been on studying and improving individual-level communication between clinicians, patients and their families,” the researchers said.