Rural Access

INTRODUCTION

Helping dying patients to stay at home and providing high-quality end of life care is challenging in rural areas. Hospice programs that could help patients to remain in their homes do not cover all of Minnesota, and many rural hospice programs struggle financially because of the small numbers of eligible patients. A number of rural areas face a shortage of doctors, nurses, and other health care providers. In addition to a shortage of professional caregivers, rural Minnesota suffers a shortage of family and informal caregivers as, an increasing number of young people leave the rural areas for urban settings.

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"I had no information or awareness of services in this area and I’ve lived here for years. Information must be made known!"

~ Community roundtable participant

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To better understand the problems regarding end of life care outside the Twin Cities metropolitan area, Partnership staff conducted four regional "Roundtable Discussions." The discussions were held in Breckenridge, Little Falls, Duluth, and Rochester and were hosted by such local community members as the local hospice program and the regional Area Agency on Aging. Altogether, over one hundred people participated in the discussions, including physicians, nurses, social workers, chaplains, senior citizens, local government officials, funeral directors, and clergy.

The discussions produced a wide range of information regarding care issues and the needs of each community. The discussions focused around the issues of education, access to end of life care, and public policy.

All groups identified a strong need to educate community health care professionals, including doctors and nurses, on end of life care. The education needs identified included:

• Communication

Improving communication with patients and families; as one physician noted, "Doctors are some of the worst communicators when it comes to talking about dying."

• Pain and symptom management

Improving pain and symptom management skills; a nurse said, "Many nurses don’t know the basics of pain management—simple things like putting a patient on a regular pain relief schedule or always combining a bowel program with the use of morphine."

• Hospice referral

Understanding hospice and when to refer; a hospice manager commented, "Like many programs, we get referrals so late we hardly have time to see the patient."

Public and community education was also identified as a need. Areas for improvement included:

• Hospice Care

Increasing public awareness about hospice care; a community participant pointed out, "Many people don’t know we have hospice around here."

• Health care directives and advance care planning

Increasing public awareness about health care directives and advance care planning; as a senior community member said, "We don’t know where to go to find out about this."

• Religious leaders

Increasing community clergy skills and comfort in dealing with dying people; one participant commented, "When my wife died, my minister didn’t know what to say to me. I felt abandoned."

Suggestions for improving health professional education centered on creating local opportunities to educate physicians and nurses. Public education included use of community clergy, parish nurses, and funeral directors as well as the continuing role of hospice programs in raising public awareness.

The ability to access high-quality end of life care was identified as a significant issue. A number of concerns were articulated specific to rural areas:

• Distance

The further a patient lives from a populated area, the more difficult it is to receive services at home.

• Lack of informal and professional caregivers

A public health nurse commented, "In our region, many of the children have moved away. When someone is old and frail, they have no one to take care of them."

• Out-of-area physicians

many patients see physicians in metropolitan areas and are not referred back for services in their community when they need them. In addition, the out-of-area physician may not communicate well with the local physician.

• Pediatric populations

Pediatric palliative care is problematic both because of insurance issues and the lack of knowledge and resources to care for dying children. A nurse stated, "We need a central resource we can call with questions about pediatric palliative care."

Minority and immigrant population access issues were also identified. Problems discussed included:

• Lack of skilled medical interpreters

• Lack of advocates in the community to help people access services

• Lack of translated materials and tools

Recommendations for addressing geographical disparities in end of life care center on two issues: hospice and improved education.

Providers and communities should partner to ensure access to end of life services:

• Create education and development opportunities to strengthen hospice infrastructure. Strategies include hospice management workshops to help hospice leaders expand access, understand finances, and explore the benefits of building coalitions.

• Fund the development of hospice programs in unserved areas. Strategies include public and private grants and local fund-raising initiatives.

• Educate the public on end of life services through locally based initiatives. Strategies include training information and referral personnel from Area Agencies on Aging and county workers on hospice benefits and other resources.

• Educate physicians, nurses, and other health care personnel in hospice and palliative medicine. Strategies include development of local and regional education opportunities.

Minnesotans in rural and sparsely populated areas have less access to high-quality end of life services, including hospice care. Distance, fewer resources, and a decreasing number of family caregivers contribute to the problem. Local health care professionals, such as doctors and nurses, are not always proficient in end of life care, nor do they have the educational opportunities to increase their skills. Recommendations for improvement include strengthening current hospice capabilities, and increasing funding to expand hospice programs into currently unserved areas. In addition, communities should partner to increase public awareness of end of life resources and train health care professionals in end of life care.