Name of Project: Helping Hands
Institution: Bristol Bay Area Heath Corporation, Dillingham, AK
PI: Robert Swope
Abstract (as described by Project staff)
This project is establishing a culturally sensitive, cost effective, rural palliative care program. The project utilizes the existing integrated health care system for support and resources from other social services agencies. The hospice will provide an opportunity for terminally ill elders and others to remain in their home community while receiving end-of-life palliative health care services.
Brief Synopsis of Program Characteristics, Successes and Challenges
Culturally sensitive is a hallmark of this program of hospice-like services in Bristol Bay villages. The project allows patients who are nearing the end of their lives to stay near family and friends and sometimes at home instead of being transported hundreds of miles to unfamiliar surroundings and strangers. Thus, the program’s “every day” name, “Helping Hands” or Ikayurtem Unatai (Helping Hands in Yupik), is particularly appropriate and reflects the cultural sensitivity of the issue of dying for Alaskan natives.
The project accepts all diagnoses and ages, and they are accepted within a 2-year window of anticipated death. The project provides curative and palliative care simultaneously.
The project’s nine physicians, two nurses, a volunteer coordinator, a social worker, a medical anthropologist, a health project planner and volunteers – teen and village-based – provide care that allows patients and families to stay in comfortable and familiar settings. Each volunteer receives at least four hours of training by the volunteer coordinator using a culturally sensitive guide and materials developed specifically for this program. Community volunteers provide routine medical assistance in local communities between physician and nurse visits. Teen volunteers spend time with some patients and help them write in the patients’ journals or even just sit quietly with the patient. The teens, who are trained using special materials developed by the project, get credit from the school in either history or English for any work they do as volunteers for the program.
The primary care provider assists in the development of the initial palliative care plan and maintains active involvement while the patient is enrolled in the project. The project utilizes an interdisciplinary team composed of a health planner, an RN, a doctor and a volunteer coordinator who serves 15-20 patients per month. Travel restricts the project’s ability to care for many more patients.
They have been proactive in the area of pain management and have conducted a pain management seminar for physicians and nursing staff. A pain protocol has been developed and is in use.
Challenges include staff turnover and weather difficulties. The program also attracted a much larger number of patients than expected, stretching the ability of the staff to meet program requirements as well as complete development and education objectives.
This project has developed several valuable exportable tools. The training curriculums, including caregiver, volunteer and CHA/p, would be very helpful for others who are attempting to train medical professionals and volunteers who serve indigenous populations. Other exportable tools include brochures, pain assessment tools, sub-g port protocol and a patient journal. This project has also done significant work in focus groups in three culturally diverse villages, creatively adopting the focus group questions to this diverse audience. This too is a very valuable exportable product including the process and outcomes of these discussions. They have the potential to be a model for others in Alaska and nation-wide.
They have some very impressive information and education tools. These include a logo, program name and mission statement; program description brochure, descriptive card, folder, magnet, volunteer brochure and story book. They also worked with a local public radio reporter to do interviews to project leaders and talked to villagers about the program. The interview was aired throughout Bristol Bay and was targeted for statewide broadcast. They have a wonderful collection of one-page vignettes of the lives of some patients in the program. It would be useful to consider possible publication and dissemination of these stories. They are beautiful.
The journal is one of the most beautiful and meaningful publications of its type that we’ve seen. Each patient in the program receives one of these journals, which offers the opportunity to record family history and allow knowledge and wisdom to be handed down to other generations.
The project received an NPO communications grant to:
Generalizing the Model
Program staff, when asked what it would take to generalize the model, said “time and opportunity to present the program on a larger scale.” The training curriculum, if finalized, tested and refined, offers the potential to be a model for others in Alaska and throughout the nation who wish to replicate this project’s efforts.
The project is planning several journal articles and is working on methods of spreading the word to other Alaskan health and social service providers. There are several agencies and providers that would benefit from learning about this work including the Alaska State Hospice Association and Nursing Home Association and other Alaskan native corporations. The project has been given the opportunity to present their model to the Providence Alaska Medical Center’s health care providers in Anchorage.
This model, developed for native Alaskans, may have applicability for non-native isolated Alaskans served by Providence Alaska Medical System. Thus reaching this system with dissemination efforts is important. In late winter, Bristol Bay presented to the full state medical board, which gave them the opportunity to elevate this project. In addition, they also had the opportunity to present to the “mega” meeting in Juneau Feb. 19-21. This included the Alaskan legislature and medical board members.
Words of Wisdom from the Project
When asked what advice they would offer another institution or project team in another community, Bristol Bay staff said that others needed to think about the amount of time necessary to make this project work. “It takes commitment with key personnel and time for only working on the project. Our project is a full-time plus job. Be sure that you have people who will be able to give HUGE amounts of time. Also, money is necessary for the extra work required and strong institutional support is necessary to ensure the program sustains past the grant. Think sustainability.”
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