Advance care planning has remained a priority for hospice and palliative care providers during the coronavirus pandemic as they strive to reach patients sooner in their illness trajectories and ensure goal-concordant end-of-life care.
Research has shown that reaching patients sooner in the care continuum can be beneficial for providers and patients alike, as well as the families and caregivers who support them. Incentivizing advance care planning discussions to place a greater emphasis has been correlated to improved outcomes. Such discussions about patient’s end-of-life goals and wishes have been associated with improved access to quality of care and longer life expectancy.
Stakeholders in the field have increasingly invested effort in expanding the awareness and availability of advance care planning, as well as changing public perception of hospice and palliative care. New research from the Coalition to Transform Care (C-TAC) has identified evidence-based best practices for advance care planning during the pandemic and beyond.
“Advance care planning [ACP] is an essential step in ensuring that people receive the care they want, when and where they want it,” Tom Koutsoumpas, CEO, co-founder and co-chair of C-TAC, told Hospice News. “From educating providers on the value of advance care planning early in their careers to raising awareness of ACP through social media, this report offers a roadmap to expanding access to these important services. As we face the COVID-19 pandemic, it is all the more important for individuals and their families to have meaningful conversations about their goals of care.”
In collaboration with Discern Health, a research and advisory firm, C-TAC conducted research to develop evidence-based best practices in advance care planning, including recommendations for hospice and palliative care providers on how to better incorporate goals-of-care conversations into staff training, as well as strategies to begin end-of-life decision-making process earlier in a patient’s care. The organizations consulted stakeholders during the report’s development, including leadership of Respecting Choices, which offers advanced care planning platforms.
C-TAC’s research identified seven factors that can influence advance care planning, including patient and family engagement, provider education, and state policies and regulations. The best practices identified in the report included:
- Recognizing racial and economic disparities in advance care planning and considering social determinants of health when designing programs
- Creating educational programs for clinicians and health care organizations on the value of advance care planning and how to have meaningful conversations
- Making advance care planning materials available in multiple languages to increase accessibility for patients and their families
- Advancing state policies that support family caregivers, aligning policies with national and global efforts
- Developing interventions that engage people with serious illness before they are in crisis
“Advance care planning allows patients the opportunity to reflect on what matters most to them and to express that to their health care team, family and loved ones,” said Stephanie Anderson, M.D., executive director of Respecting Choices. “In hospice, we often assume that everyone in the family is on the same page regarding what matters most and what we find is that often is not the case.”
Other research supports the view that offering providers training in advance care planning leads to significantly increased incidence of care-goal conversations, according to a study published in The Journal of Post-Acute and Long-Term Care Medicine (JAMDA) that focused on dementia patients and families. The study found that a controlled trial group of general practitioners who received advance care planning training, including information about shared decision-making and participation in role-playing, were better equipped to have care planning conversations with patients who have dementia.
The findings suggested that these conversations “were meaningful to patients with dementia,” and observed that “non-medical and medical preferences were discussed more often” among patients, families, caregivers and providers regarding their current and remaining life stages.
The C-TAC report indicated that broad disparities exist in access to advance care planning among some demographic groups, often along racial or socioeconomic lines. Factors such as distrust of the health care system, cultural beliefs about death and language barriers can dissuade some families from engaging in conversations surrounding life’s final stages.
“Some of the studies we reviewed did find racial and economic disparities in advance care planning, and black Americans less likely to complete directives than white Americans,” Theresa Schmidt, vice president of Discern Health, said to Hospice News.
The underlying causes of lower prevalence of advance care planning are multifactorial, according to Schmidt, and reflect wider disparities that exist throughout the health care system. Some groups lack equitable access to advance care planning or are faced with high costs of care or a lack of health insurance to pay for those services. A lack of diversity among the workforce that conducts these conversations with patients also contributes to limited utilization among underserved populations.
“Researchers have seen this gap decrease over time or even disappear when they account for financial disparities,” said Schmidt. “People with higher socio-economic status, education and income also have higher rates of advance care planning and document creation. Studies have also shown that people who are more religious may be less likely to participate in advance care planning. Research has also shown a relationship with gender, with a higher percentage of women utilizing advance care planning [than men].”
Across all demographics, increased access to advance care planning can have a considerable impact on the quality of life for patients and their loved ones.
“When advance care planning is done well, it is well-accepted and provides meaningful experiences and value,” said Anderson. “It begins by first exploring and seeking to understand what matters most to an individual before entering into decision-making. It is done with cultural humanity while remaining value-neutral. The peace of mind that results from that rich conversation improves the mental and social well-being of patients and reassures them that their family won’t experience the suffering of not knowing what they would have wanted if they became unable to participate in their own decision-making.”