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Volunteers and technology are keys to keeping rural patients home
Traveling 60 miles to reach patients in the most remote places is a way of life for hospice workers in rural areas. But the challenge of bringing hospice care to rural patients only begins to describe the obstacles hospices face in non-urban areas.
Despite the Homeric efforts of nurses who travel from one corner of a sparsely inhabited county to another, many rural residents remain out of reach because coverage areas of hospices there do not overlap. The same community resources available in metropolitan areas are absent in rural settings, and many rural communities are a collection of tight-knit, homogeneous residents who are often resistant to accepting help from outsiders.
"In some counties there are literally no medical services," says Wendy Hournbuckle, RN, hospice coordinator for Jamestown (ND) Hospital Hospice.
People living in rural communities make up about one-fourth of the country’s population, but geographical distances, isolation, and poverty inhibit their access to high-quality medical care.
As the country faces a boom in the elderly population, those who provide end-of-life care are trying to figure out how to overcome these obstacles. End-of-life organizations and hospices in rural communities are trying to find ways to improve access to medical care, shore up community resources, understand cultural belief systems, and meet the needs of caregivers.
For the past year, Matters of Life and Death in Bismarck, ND, a Robert Wood Johnson-funded organization studying rural end-of-life care, says hospices have been a major focus of their research.
"We believe the holistic approach of hospices will allow dying patients in these areas to stay at home, rather than having them live outside their community in a nursing facility or hospital," says Theresa Frohlich,
project coordinator of Matters of Life and Death, which is spearheaded by the North Dakota Medical Association. "But what we’re finding is that hospice services are fragmented throughout the state."
Expand volunteer programs
A few rural hospices are increasing their volunteer staffing to try to address the shortage of hospice care. Some are expanding coverage areas by recruiting volunteers who live in the underserved areas.
Hournbuckle also says rural hospices should expand their volunteer programs and provide proper training to people in living underserved areas so they can overcome the barriers some communities would place on outside caregivers.
Any program that gives volunteers an expanded role in patient care requires an intense volunteer training program. Volunteers should be educated in the following elements of hospice care:
• The dying process. Teach volunteers the signs and symptoms associated with the last hours of life so they can communicate this information to the family. This communication can prevent unnecessary grief over what might be considered suffering when instead the symptoms should be seen as a natural and inevitable prelude to death.
• Types of terminal illness. Volunteers should be aware of the kinds of diseases they will face, as well as the symptoms associated with these diseases.
• Communication techniques. Volunteers must be versed in how to talk about death with patients and must have sufficient listening skills to better gauge the needs of patients and families.
• Psychosocial aspects of death. Understanding spiritual matters, for example, will help volunteers engage patients in matters of religion in hopes of revealing a patient’s spiritual needs. Other psychosocial topics include family relationships and emotions surrounding one’s pending death.
• Hands-on caregiving. Because volunteers in rural communities will be providing the bulk of care, they need to be trained in assisting patients in activities of daily living, including brushing their teeth, combing their hair, and using the bathroom.
Training also allows hospice volunteer coordinators to assess volunteers’ ability to handle expanded duties, as well as helping to determine whether a prospective volunteer has unresolved bereavement issues that need to be addressed before being assigned a patient.
Still, volunteers may be difficult to recruit, given society’s inability to talk about death. If finding volunteers in small communities is a challenge, then technology may provide some solutions.
"Hospices might want to consider telemedicine," says Hournbuckle.
Telemedicine is an emerging technology for hospices. Hospices in Michigan and Kansas are studying telemedicine to determine where it might be best applied, including rural communities, where nurses and other hospice workers have difficulty maintaining face-to-face interactions. In addition to patient exams, telemedicine is commonly used to interpret electrocardiography, echocardiography, X-rays, and magnetic resonance imaging between remote sites.
A team of pain specialists in Kansas City, KS, uses the extensive and well-established telemedicine system of the University of Kansas Medical School to consult with patients and practitioners in communities as far as 400 miles away.
Preventing a 300-mile trip
"We have telemedicine sites in 35 locations around the state, all linked to the medical center through interactive television systems," explains Robert Twillman, PhD, a clinical psychologist who chairs the Kansas Cancer Pain Initiative. A team of three pain experts, including Twillman; Teresa Long, MD, who is board-certified in internal medicine, psychiatry, and hospice and palliative care; and Melanie Simpson, RN, BSN, OCN, pain management nurse/coordinator of the center’s pain service, consults on an as-needed basis. In the past three years, the team has advised 15 to 20 patients, some of whom "would have had to travel 200 to 300 miles to see a true pain expert in person," Twillman notes.
Typically, the patient’s local physician will schedule the telemedicine appointment and then fax the patient’s records. The pain experts meet via video with the patient and a health care provider and make recommendations about prescriptions and non-pharmacological interventions. "Many times, the physicians are pretty certain about what is happening, but they consult with us to confirm that they’re doing the right thing — and they usually are," Twillman notes.
Since May 1997, Kendallwood, a hospice in Kansas City, MO, has been using telemedicine to keep more frequent contact with their at-home patients. Called "telehospice," the Kendallwood program is being used by 20% of the agency’s patients, mostly those living in rural areas.
"As we worked together, I saw that they had a significant rural background," explains Gary Doolittle, MD, Kendallwood’s medical director and director for telemedicine services at the University of Kansas Medical School. "They were being paid a per diem by Medicare. As a result, it’s a large expense to visit patients in terms of nursing time and windshield time."
Videophone permits 24-hour hospice access
Kendallwood’s telehospice program uses a videophone, telephone, and existing phone lines at home with caregivers in an office. The hospice version allows patients 24-hour access to doctors, nurses, social workers, and chaplains within the hospice.
The videophone — a small television screen with a camera eye mounted above it — is connected to a telephone and placed on a table or desktop. The unit is small enough to be moved throughout a patient’s home to allow hospice workers flexibility in viewing patients.
Once installed, the patient and hospice worker can call each other by simply dialing the phone and pressing telephone keypad buttons as prompted by an on-screen menu to establish a video connection. Receiving a videophone call requires the same process. The videophone allows each party to zoom in on the other party, pull back, or change the screen angle by tilting the screen.
Telemedicine is an appropriate service for all hospice patients, says Maria Hoffman, RN, BSN, the patient care coordinator at Kendallwood. Its use goes beyond the clinical applications for which most health care organizations are using the technology.
Doolittle says hospices that want to implement telemedicine should take the following steps:
• Training. Staff should become thoroughly familiar with the technology, because any hint
of staff unfamiliarity with the technology will undermine the training of patients. Doolittle recommends applying the technology to office operations to get staff accustomed to it, such
as setting the videophones up for meetings with remote staff.
• Identify key staff. Single out staff from each discipline who will champion telehospice. These staff members should be those who are excited about the new technology and who will push its implementation and act as consultants for other staff who have questions.
• Target rural patients. While telemedicine is an appropriate service for all hospice patients, Doolittle says patients in rural settings are particularly well-suited for telehospice.
While telemedicine offers technological innovation, improving rural hospice care also requires innovation on more basic levels. One of the challenges is providing support services to rural patients despite not having a network of community resources readily available. For instance, patients in metropolitan areas have access to meal programs that provide hot meals to homebound patients.
Churches can play expanded role
Hournbuckle says churches can serve as a key resource for hospices in rural communities where churches often are central institutions in the lives of residents. Aside from being a place of worship, a church is often a center of community functions. Because of this, church members might be willing to expand their role in helping neighbors cope during a difficult time by providing volunteers to cook and deliver meals, help caregivers keep up with housework, and provide respite care.
For Jamestown hospice, one unlikely ally is the county agricultural extension office. More known for providing assistance in farming matters, the local agricultural extension office in Jamestown also serves as a place to get end-of-life care information. County residents can go to their local offices to get written information about hospice and palliative care, Hournbuckle says.
In the effort to increase access to hospice care in rural areas, there doesn’t seem to be a single simple formula. Instead, a patchwork of innovation and technology is needed. But the goal remains the same: bringing hospice care directly into the underserved communities, rather than having workers travel long distances to provide the needed care.
"The closer we bring the services to the patient’s home, access is going to improve ," Hournbuckle says.