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 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.
Massachusetts General Hospital became aware of Care for
Our Elders and invited Isaacson, Avera's Walking Forward
program, and Great Plains Tribal Leaders' Health Board to
collaborate on the development of a culturally tailored
palliative care program on the Pine Ridge, Rosebud, and
Cheyenne River reservations. The research team completed
focus groups with cancer survivors and family caregivers
and completed interviews with oncology and primary care
providers along with tribal healers and leaders to
understand the needs, barriers, and resources needed in
order to create culturally tailored palliative care.
The Wawokiya Health Advocate (WHA) intervention was
designed, where trained patient navigators from Avera
Walking Forward conduct a preliminary needs assessment of
patients and families and then ongoing assessments of
distress, provide them with a resource manual specific to
the Tribal community, and work with patients and families
and primary and oncology providers on communicating
concerns or issues prior to a crisis occurring. The WHA
will not be providing nursing care or aide care, but more
an extra layer of support to patients and families. WHA
is anticipated to begin mid-summer 2022.
For more information about pre-program focus groups and
program results, respectively:
Isaacson, M.J. (2018). Addressing Palliative and
End-of-Life Care Needs with Native American Elders.
International Journal of Palliative Nursing,
24(4), 160-168. Article
Isaacson, M.J. (2017). Wakanki Ewastepikte: An Advance
Directive Education Project with American Indian Elders.
Journal of Hospice & Palliative Nursing, 19(6),