Underserved Communities Lack Information About At-home Hospice, Creating ‘formidable Barriers’ To Care

The National Alliance for Care at Home (the Alliance) published a new report on perceptions of hospice care among underserved populations, revealing significant knowledge gaps – including a lack of awareness that hospice care can be delivered in the home.

The Alliance’s CONNECT to Care Report, conducted by Transcend Strategy Group and published yesterday, found that Black and Hispanic people are significantly more likely not to receive hospice care if they believe that hospice is only available in a facility.

“A sizable group of Black (22%) and Hispanic (25%) respondents are either unaware or unsure whether hospice care can be provided in the home or a health care facility,” the report’s authors wrote. “This lack of awareness may contribute to disparities in hospice utilization.”

The CONNECT to Care report compiles findings from surveys of 2,000 people, focusing on the perceptions of Black, Hispanic, Asian American, LGBTQ+, and rural individuals regarding hospice care.

The report found that certain demographics have less knowledge regarding hospice and palliative care than others.

The knowledge gap about hospice and palliative care services is particularly severe among Hispanic people, according to the study, with 67% of Hispanic respondents reporting that they want to learn more about available services.

Knowledge of Medicare hospice coverage also varied. Among White respondents, 52% reported awareness that Medicare covers hospice services, compared to 39% of Black respondents and 41% of Hispanic respondents.

The report also found that language is the primary barrier preventing patients from seeking health care. People who speak a language other than English often rely on home caregivers to translate, according to the report, which “further reinforces” their preferences for in-home care over facility-based care. Over half of Hispanic respondents reported that having hospice workers who spoke the patient’s language was “essential” for comfort.

Providing care in a patient’s language can also improve patient outcomes and care quality.

Caregivers look for flexibility in hospice care, the report’s authors wrote, and prefer to have in-home hospice or hospice services delivered in a nearby facility, both of which allow people to continue working. This is especially important for younger caregivers, according to the report.

Effective communication can help bridge knowledge gaps that present formidable barriers to accessing care, according to the report, and empower people to make informed decisions about hospice and at-home care.

The report’s authors recommend that providers develop materials that explain how hospice works, provide ongoing education, particularly for older people and underserved communities and highlight that hospice can be provided in the home and be covered by Medicare or other insurance plans.

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