Rural Families Have ‘Critical’ Need for More Hospice, Respite Care

Economic and financial headwinds have increasingly posed significant challenges for rural-based hospice providers, with some shuttering their programs in recent years.

The trend has limited access to hospice services among an already underserved population while also raising concerns around quality and trust in equitable care delivery, according to a recent study.

The ability for providers to afford rising wages for nurses, social workers and home health and hospice aides has been challenged by lagging reimbursement rates and economic forces such as inflation and rising care delivery costs. Hospices in rural regions have particularly been hard hit by these labor pressures amid rising demand for their services, with recent years bringing program closures across the country.

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Rural-based caregivers have increasingly faced tremendous burdens as a result of hospices’ sustainability challenges, according to Dr. Steve Landers, CEO of the National Alliance for Care at Home (the Alliance).

“Ensuring access to high-quality hospice and home care in rural communities is critical,” Landers said in a statement. “These communities deserve care that is tailored to their unique needs, and in an America where more and more health care desserts are arising due to provider closures from inadequate reimbursement, maintaining quality care and continuing to build trust in the care provided is of the utmost importance.”

Having a hospice offer services wherever a patient lives was the top priority cited by 400 rural-based caregiver respondents in a recent research study from the Alliance’s Diversity Advisory Council and Transcend Strategy Group. However, roughly 40% of the caregiver respondents were not able to name a nearby hospice provider.

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Rural caregivers often lack sufficient hospice resources, an increasingly challenging issue amid a swelling aging population with unmet end-of-life needs. The number of rural hospices declined by 1% on an annual basis between 2018 and 2022, according to a 2024 Medicare Payment Advisory Commission (MedPAC) report. About 14% of hospices offer services in rural areas, the MedPAC report found.

The lack of hospice availability has left gaps in supportive services that address terminally ill patients’ full range of physical, emotional and spiritual needs.This has also worsened disparities among rural family caregivers.

Access to respite care was the second-most cited priority among the 400 caregiver respondents to the Alliance/Transcend survey. Three-out-of-five of the respondents indicated that they experienced times when they needed a break from caregiving but were unable to receive one.

Caregiver burnout is a “real phenomenon,” occurring among family members, the Alliance/Transcend researchers indicated. Respite care can be an “invaluable resource” for caregivers and family members, particularly those providing support to dementia patients and individuals needing assistance with long-term plans for their loved ones, they stated.

The research study also found ties between limited access to hospice care and family satisfaction. Roughly 30% of the rural-based caregivers surveyed expressed a lack of confidence and general trust in their local providers to deliver quality care.

Additionally, between 27% and 42% of the survey respondents had “some degree of doubt” that hospices could understand their beliefs and provide non-judgmental care. A large portion of the caregivers expressed a desire to receive hospice care with spiritual components for themselves and their loved ones.

An important part of improving quality and reach among rural caregivers is understanding their communication preferences. More than half (or 60%) of the respondents were 45 and under, many of whom preferred visual methods of learning and less direct communication avenues such as text messaging.

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