Gap in End-of-Life Care in Rural Areas Is an Ethical Concern

By Stacey Kusterbeck

Rural hospices have limited resources and lower Medicare reimbursement rates compared to their urban counterparts. These challenges result in disparities in end-of-life care. “This financial inequality, with vast geographic distances and more extraordinary travel expenses, often leads to delayed or insufficient care for rural patients,” says Moazzam Shahzad, MD, a hematology-oncology fellow at Moffit Cancer Center.

Shahzad and colleagues conducted a review of published studies, white papers, and policy statements to identify barriers that prevent rural hospices from delivering palliative and end-of-life care.¹ “Our findings revealed that geographic isolation, regulatory barriers, and technological limitations significantly hinder rural hospice operations,” reports Shahzad.

Targeted financial, regulatory, and technological solutions are urgently needed to bridge the access gap in these communities, according to the study authors. “Multiple, interconnected challenges hinder access to end-of-life and hospice care in rural areas,” says Shahzad.

Geographic barriers are significant, since rural populations are spread across large areas. This makes it difficult for patients to travel to healthcare facilities and for hospice providers to reach their homes. “This isolation often leads to delays in care and limits the availability of timely end-of-life support,” explains Shahzad.

Financial constraints exacerbate these issues. Rural hospices typically receive lower Medicare reimbursement rates than their urban counterparts, yet face higher costs related to travel and lack of economies of scale.

“Financial strains can prevent rural hospices from expanding services, hiring adequate staff, or maintaining high-quality care,” says Shahzad.

Staffing shortages further complicate access to end-of-life care. Rural facilities need help to attract and retain qualified hospice providers because of the constraints of fewer local training programs, lower pay, and limited professional support in rural settings, says Shahzad.

“Limited access to quality end-of-life and hospice care in rural areas raises significant ethical concerns around equity, justice, and the right to adequate healthcare,” says Shahzad.

Rural patients experience delays and limited options for hospice support, simply because of geographic location. “This challenges the ethical principle of providing equal care to all. This disparity can compromise the quality of care these patients receive in their final days, affecting their comfort, symptom management, and overall dignity,” says Shahzad.

Rural families face financial and logistical strain and must travel long distances or navigate complex healthcare systems to access hospice. This often forces families into difficult choices about pursuing or foregoing care. “These disparities highlight the need for policy reforms to ensure fair and compassionate end-of-life care access for rural communities, emphasizing equal support for all patients, regardless of where they live,” says Shahzad.

The study authors proposed these solutions to improve access to hospice care in rural areas:

• considering the need for advanced practice providers to serve as physician heads;
• adjusting Medicare reimbursement models to provide higher rates or standardized per diem rates for rural hospices;
• using telehealth to reduce travel costs and provide timely care by providing virtual consultations for symptom management and emotional support;
• enhancing training and recruitment efforts for rural healthcare providers through simulation-based programs;
• offering loan repayment incentives to attract and retain qualified hospice staff;
• expanding swing beds and critical access hospital programs. “This will enable rural facilities to offer end-of-life care closer to home, minimizing the need for long-distance transfers,” says Shahzad.

In urban areas, patient volumes are large enough to financially support a team to specialize in palliative medicine. Rural communities have much smaller patient volumes, observes Karla Weng, MPH, CPHQ, director of program management at Stratis Health.

In addition to poor reimbursement mechanisms, additional barriers for rural communities include the lack of community awareness of palliative care, limited resources, lack of staff training, and limited dedicated palliative care personnel, adds Weng.

“Furthermore, rural communities are more dispersed geographically, thus causing mileage and time reimbursement challenges. Lack of reliable high-speed internet in many remote communities impacts the ability to provide telephonic serious illness services,” says Weng.

Since 2008, Stratis Health has worked with more than 40 rural communities to start or strengthen community-based palliative care programs.² “Initially, we assumed that people with serious illness were driving out of their communities to receive palliative care. What we learned was that people needing the services were just not receiving them. Lack of access palliative care services is inequitable for people living with serious illness in rural communities and is a grave ethical concern,” says Janelle Shearer, RN, MA, CPHQ, program manager at Stratis Health.

People living in rural communities often are older and sicker, with more chronic comorbidities than their urban counterparts, and, therefore, have a higher need for palliative care services, notes Shearer. In addition, rural communities often are socioeconomically disadvantaged, with higher rates of poverty and lower levels of education. Often, children have relocated to an urban area and are not readily available to assist parents and family members when a serious illness occurs.

Some rural areas have developed innovative solutions to providing palliative care services, by capitalizing on community resources. “Affiliation or partnerships with larger urban healthcare systems that offer palliative care services can also provide cost savings and support, such as access to technology, training, and financial resources,” adds Shearer.

Some rural palliative care teams work with local clergy to support patients’ spiritual care needs. This is particularly important when the local hospital does not have chaplaincy services available. Local volunteers can address patients’ social isolation, and provide help with chores, meals, and rides. “Ethicists at health systems could serve as a resource to help support rural palliative care teams with training or consultation when challenging situations arise,” offers Weng.

References

1. Anwar A, Amin MK, Anwar S, Shahzad M. Bridge the gap: Addressing rural end-of-life care disparities and access to hospice services. J Pain Symptom Manage. 2024;68(4):e280-e286.
2. Weng K, Shearer J, Grangaard Johnson L. Developing successful palliative care teams in rural communities: A facilitated process. J Palliat Med. 2022;25(5):734-741.