Rural Hospice and Palliative Care Models and Innovations

Description

In the U.S., more than other ethnic groups, American Indian, Alaska Native, and Native Hawaiian elders tend to have poorer health, less money, greater disability, and shorter life expectancies. In South Dakota, 12.2% of the American Indian population has diabetes, compared to the Caucasian population with a diabetes rate of 6%. According to a 2013 American Journal of Preventive Medicine article, American Indians in South Dakota have the highest mortality rates in the nation, with heart disease and cancer as the leading causes of death.

Elders seeking medical attention often experience cultural barriers. For example, while many Lakota elders are fluent in English, their healthcare providers often don’t speak Lakota or ask if patients would like a translator. If patients have to hear bad news, for example, they might prefer to hear it in their native language, since they don’t have to mentally translate the doctor’s words into Lakota first. Speaking and listening in Lakota becomes more personal, and the elders are better able to deal with the news.

In addition, the Lakota people, among other tribes, do not view property or wealth the same way Caucasians often do. While Lakota elders may not see a need for a legal will explaining who will inherit what, their property will still be divided or transferred by the government.

Care for Our Elders began when a palliative care physician asked Assistant Professor Mary Isaacson from South Dakota State University and her nursing students why American Indians from the western side of the state were traveling to Sioux Falls to receive palliative care and hospice care, when the majority of reservations are located in western South Dakota. This group met with healthcare, palliative care, and hospice care providers to discuss why this was the case. Many providers said that they were hesitant to broach the subject with their older patients, in case the suggestion of hospice care might be interpreted as the providers giving up on their patients.

However, when this group discussed palliative and hospice care with Lakota healthcare professionals in the region, they explained, “No, this is something we need.” Isaacson then met with Lakota elders and discussed how palliative and hospice care might work on the reservations and what the elders wanted from those programs. The elders saw death not as giving up, but as another cycle of life.

Care for Our Elders collaborates with local organizations and branches such as the Oglala Sioux Tribe Health Administration, Oglala Sioux Tribe Health Education, Dakota Plains Legal Services, and Indian Health Service in order to increase awareness of the need for advance care planning by American Indian elders in South Dakota.

The program was initially funded by a $2,500 Delores Dawley Faculty Seed grant and is now supported by a $10,000 grant from the South Dakota Cancer Coalition.

Services offered

Three Pine Ridge Reservation elders received training to become advance directive coaches. The program has found that the other Lakota elders are more receptive to coaches from their culture than to coaches from outside their culture. These coaches:

• Delivered Public Service Announcements on the local radio station
• Developed a 30-minute informational television program with the Oglala Lakota College media personnel
• Traveled to community centres and health fairs around the Pine Ridge Reservation to inform fellow elders about their palliative care and end-of-life options and resources.

In addition, the advance directive coaches and Isaacson designed a new advance directive brochure. This brochure, illustrated by a Lakota artist, translates key terms into Lakota and medical jargon into everyday language. Social workers and nurses use the brochures to talk elders through the steps and the importance of choosing a Healthcare Decision Maker. In addition, the brochure provides the names of Indian Country partners and the contact information for Dakota Plains Legal Services.

In turn, Dakota Plains Legal Services provides free services to any Lakota elder aged 62 or older and will drive to any community where at least four individuals are requesting their services. For Pine Ridge, a reservation that encompasses over 2 million acres, Dakota Plains’ offer can provide immense relief to elders without transportation.

Results

Since the program’s inception, the three advance directive coaches have traveled over 1,000 miles, visiting 11 different communities and completing 229 face-to-face contacts. The advance directive coaches completed contact sheets, which asked elders whether they had ever heard of palliative care or whether they had heard of or had a living will.

Before Care for Our Elders, 84% of those surveyed had never heard of a living will, and only 1 of the 229 elders actually had a living will. None of those surveyed had heard of palliative care. Thanks to the program, more Lakota elders understand the differences between a will and a living will as well as the need to have end-of-life discussions with family and healthcare providers.

For more information about program results:

Isaacson, M. (2017). Wakanki Ewastepikte: An Advance Directive Education Project with American Indian Elders. Journal of Hospice & Palliative Nursing, 19(6), 580-587.

Barriers

Implementing Care for Our Elders took longer than anticipated. The advance directive coaches and Isaacson went through the Oglala Sioux Tribal Research Review Board (OSTRRB) and had to start their educational program two months later than planned. Since this step was important to the group, they simply readjusted their schedule and began the educational programs that included some data collecting in mid-August instead of June. Due to changes within health administration, the group needed to present their proposal again so that the new staff was aware of the program.

Other barriers in carrying out the program include the immense size of the reservation and weather conditions that prevent program coordinators and participants from traveling.

Replication

Healthcare providers working with patients from other cultures need to move from broad generalizations about a culture to more specific information about a group or patient within that culture. Isaacson, for example, might read about Native American health issues but then speak with the spiritual healer or medicine man in a specific Lakota tribe. She asks how she can best approach a subject like Alzheimer’s with a patient. When she meets with a patient, she invites the elder to bring family members and other support.

Providers should also be willing to take on the role of facilitator or encourager and leave the role of doer to the elders. Care for Our Elders works because it stems from what the elders want and need, not from what others want for them.

In addition, program coordinators recommend involving the community every step of the way. Letting the community lead the program helps to ensure that it is done in the most culturally respectful way possible.

The advance directive brochure is now available via the South Dakota Department of Health educational materials catalog and can be downloaded or ordered free of charge. The brochure is not copyrighted, so any group can borrow, use, or distribute the brochures and change whatever they need to in order to make the brochures specific to their targeted audience.

For those who want to train advance directive coaches or do advance directive education, the National Hospice and Palliative Care Organization offers useful information in plain language. Isaacson used information from this and other websites to create packets for the advance directive coaches. They talked through the information together, and the advance directive coaches were able to keep the packets for future reference.

Description

Because most care options focusing on palliative treatment of chronic and debilitating illnesses in Minnesota are available only in a hospital setting, Care Partners of Cook County was created to address the lack of hospice and palliative care options for the rural residents in this Minnesota county.

Urban areas have large patient volumes to support palliative and hospice care programs. But due to Cook County’s location 110 miles from the nearest tertiary centre, the area was unable to offer round-the-clock continuous home care, which prevented the program from meeting Medicare’s hospice regulations.

In 2010, Care Partners of Cook County was created by a Community Service/Community Services Development grant from the Minnesota Department of Human Services to meet patient needs despite these challenges. The program was also the result of strategic partnerships with North Shore Health Care Foundation and Sawtooth Mountain Clinic.

This program is unique because it not only connects patients with medical services, but connects them to community services such as transportation, meals, and financial services. Care Partners engages professionals and volunteers to lend emotional and spiritual support, hand-in-hand with providing physical relief. Local physicians, nurses, social workers, and volunteers coordinate holistic, suitable care options for patients and caregivers through a team approach to palliative care.

A physician and local nurse coordinator conduct monthly review for program patients, ensuring that patient needs are being met, symptoms are being managed, and medications and treatments are working properly. By involving social workers and volunteers, the program also helps caregivers of patients with chronic illnesses. These caregivers are offered coaching, emotional support, and resource coordination. Trained volunteers are available to provide companionship and assist with patient activities. This program’s community-based approach provides personalized care to the patients in Cook County, without having to leave the comfort of their homes.

Services offered

• Palliative care coordination
• Caregiver coaching and support
• Resource coordination
• Advanced care planning
• Senior rides service
• Training, education, and public programs
• Volunteer visits
• Senior Chore Program

Results

Since its inception in 2010, Care Partners of Cook County has served 185 residents seeking palliative care. In 2015, Care Partners of Cook County became an independent 501(c)3 nonprofit organization.

Summary of 2016 services:

• Served 119 clients
• 42 Senior Ride clients received nearly 380 rides
• 34 clients received 178 Care Coordination/End-of-life care hours
• 24 clients received 174 Volunteer Visits
• Volunteer drivers logged over 11,000 miles
• More than 400 hours of coaching and support for 36 caregivers

Barriers

The main challenges surrounding this program are:

• Shortages of volunteers willing to donate extended periods of time
• Connecting with clients before they reach a crisis mode
• Low program enrolment due to the small size of the community

Replication

In order to make this model most helpful, communities should do the following:

• Adapt each person’s need to the variety of services available
• Establish a care coordinator and system of volunteers
• Build relationships with local healthcare professionals

Contact Information

Kay Grindland, Director
Care Partners of Cook County
218.387.3788
carepartners@boreal.org