Building stronger relationships and trust among underserved populations is key to breaking down barriers to hospice care. Having multiple, transparent communication avenues can help hospices develop trust.

This is according to a new report from the National Alliance for Care at Home that explores underserved communities’ perceptions about hospice. The Alliance report, dubbed as CONNECT to Care – Expanding Access through Hospice Insights, spans insights among Asian American, Black, Hispanic, LBGTQ+ and rural patient populations. The report was developed based on a series of nationwide surveys conducted by the consulting firm Transcend Strategy Group.

“Applying the CONNECT framework empowers hospice and palliative care organizations to effectively address disparities in hospice care access and quality among diverse communities,” the Alliance stated in the report. “Health care professionals are encouraged to implement these principles to foster active engagement, collaboration and transparency within their practices. By doing so, they can contribute to developing equitable, inclusive and comprehensive hospice care services that meet the unique needs of all patients and their families.”

The report’s acronym, CONNECT, stands for its key themes: Communication, Outcomes, Network, Nurture, Engagement, Collaboration and Transparency. Participants included adults 21 and older from underserved communities who experienced a seriously ill loved one’s death within the past three to four years or individuals involved in their health care decisions.

The research is designed to provide hospices with a wide view around diverse patient preferences and community engagement strategies that support more equitable, inclusive and comprehensive access, according to the Alliance.

Understanding the barriers

Mistrust was found as a significant barrier among LGBTQ+ populations. Nearly one-third of the 400 LGBTQ+ respondents cited concerns that they doubted or were unsure whether hospice providers would respect their sexuality or gender identity.

Almost half of those in the LGBTQ+ community indicated that clinicians waited too long to discuss their end-of-life care options. Individuals in the LGBTQ+ community indicated that they would be more inclined to trust a provider if they saw more diverse representation among interdisciplinary care teams.

More than half (52%) of Hispanic survey respondents indicated that having hospice workers who spoke their loved one’s language was “essential” to a patient’s comfort in the report.

Misconceptions that hospice is only offered in a facility led Black and Hispanic participants to be “significantly more likely” to forgo hospice compared to Caucasians, at rates of 42% and 48%, respectively, versus 32% for white populations. This finding suggests that a lack of awareness around hospice poses as a contributing factor to disparities in utilization, according to the Alliance.

Meanwhile, geographic barriers have curbed greater hospice utilization among rural patient populations. An average of 27% to 42% of rural-based respondents expressed doubts that a hospice worker would provide timely home-based care during an emergency, respect and understand caregivers or provide non-judgmental support.

Additionally, about 30% of all respondents indicated a lack of confidence in their local hospitals to provide high quality care, particularly citing concerns regarding rural-based systems. The “small, but significant gap” in trust of local rural hospitals presents an opportunity for hospice providers to better fulfill unmet needs among underserved patients and their caregivers, the Alliance stated in the report.

Improving access

Educating underserved communities about their home-based end-of-life care options is key to moving the needle, the organization indicated. More than three-quarters of respondents reported being mentally and emotionally exhausted during their time as a family caregiver, with three-out-of-five participants recognizing a need for respite but lacking the ability to take a break.

Meanwhile, more than 40% of rural respondents were unable to name any hospice providers serving their geographic region. This trend indicates a “substantial gap in local awareness,” according to India Harris-Jones, manager of health equity and diversity at the Alliance.

Improving awareness comes with understanding the significant impact that personal networks, cultural communities and spirituality can have on decision-making regarding hospice care, Harris-Jones indicated.

“These insights underscore the importance of culturally sensitive communication and community engagement in improving access to hospice care services,” Harris-Jones told Hospice News in an email. “It’s important for hospice providers to recognize that addressing disparities in care requires a multifaceted approach that goes beyond traditional outreach methods. Engaging with community and faith-based organizations, providing culturally sensitive education, and fostering active participation from patients and caregivers are important steps toward developing inclusive and comprehensive hospice care services that effectively meet the unique needs of all patients and their families.”

The CONNECT report identified strategies that hospices can use to address health equity concerns in their communities, including:

• Communication: Identifying and strengthening opportunities for more effective communication, including language principles and channels.
• Outcomes: Prioritizing quality through the fundamental factors that influence care.
• Network: Building trust through reliable resources and support systems.
• Nurture: Promoting person-centered care and cultural humility.
• Engagement: Encouraging active participation from providers, patients, and caregivers.
• Collaboration: Fostering shared decision-making, co-created care plans, and community partnerships.
• Transparency: Ensuring clarity in care processes and quality measures.

Engaging different local community organizations and educational institutions can help hospices better understand the unique perspectives that exist across their patient populations. Community engagement can also help hospices develop culturally relevant, respectful and inclusive communication and public outreach messaging.

Having diverse representation at all levels of hospice staff and leadership can foster greater care delivery that is reflective of the cultural backgrounds and needs of a provider’s service region, the report found. Establishing an inclusive organizational culture and patient care environment means actively collecting demographic information and incorporating representation in decision-making processes.

Communication materials should be clear, concise and use non-medical language that provides education about the Medicare Hospice Benefit, the Alliance indicated in the report. Explaining the typical costs both covered and uncovered by Medicare, Medicaid and private insurance is important, as is explaining the various levels of home- and facility-based hospice options available.