Original Research: Can a Palliative Care Lay Health Advisor–Nurse Partnership Improve Health Equity for Latinos with Cancer?

Abstract

Purpose:A palliative care infrastructure is lacking for Latinos with life-threatening illness, especially in rural regions of the United States. The purpose of this study was to develop and evaluate a community-based palliative care lay health advisor (LHA) intervention for rural-dwelling Latino adults with cancer.Methods:An exploratory mixed-methods participatory action research design was carried out by an interprofessional research team that included community and academic members. Fifteen Latino community leaders completed a 10-hour palliative care training program and then served as palliative care LHAs. Although 45 Latinos with cancer initially agreed to participate, four withdrew or died and six were not reachable by the LHAs, for a final total of 35 patient participants.The trained palliative care LHAs delivered information on home symptom management and advance care planning to assigned participants. Palliative care nurses led the training and were available to the LHAs for consultation throughout the study. The LHAs made an average of three telephone calls to each participant. The Edmonton Symptom Assessment System–Revised (ESAS-r) and the four-item Advance Care Planning Engagement Survey (ACPES-4) were administered pre- and postintervention to determine the intervention's effectiveness. Encounter forms were transcribed, coded, and analyzed using case comparison.Results:The major finding was that significant improvements were shown for all four items of the ACPES-4 among both the LHAs (posttraining) and the participants (postintervention). Information on advance care planning was shared with 74.3% of the 35 participants. Participants showed clinical improvement in physical symptom scores and clinical deterioration in emotional symptom scores following the intervention, although these changes did not reach statistical significance. The advisors noted that participants were anxious about how to explain cancer to children, the uncertainty of their prognosis, and medical expenses. This sample was younger than those of other cancer studies; 51.4% were under age 50 and 73.1% had at least one child in the home.Conclusions:A community-based palliative care LHA–nurse partnership was shown to be a feasible way to engage in conversations and deliver information about advance care planning to rural-dwelling Latino adults with cancer. The positive results led to the regional cancer center's decision to select “cultural care” as its 2022 goal for maintaining its accreditation with the Commission on Cancer.

Changing Life Plans

“…One community way to educate patients and caregivers on ACP engagement is to train community leaders as palliative care lay advisors. A recent study demonstrated that a community-based palliative care intervention was a feasible way to engage rural-dwelling Latino adults with cancer in ACP conversations 28 . In this study, lay health advisors completed a 10-hour palliative care training program and partnered with palliative care nurses for consultation 28 .…”

“…Informal community leaders, such as lay health advisors, can bring information about ACP to community members before they are faced with a terminal illness. Lay health advisors have engaged family caregivers in talking to clinicians about EOL wishes and signing advance directives 28 . Engel's model helps us understand learning the cancer diagnosis and its terminal nature, being shocked and devastated, and not knowing what to expect as the biological factors that affect ACP.…”

“…Lay health advisors have engaged family caregivers in talking to clinicians about EOL wishes and signing advance directives. 28 Engel's model helps us understand learning the cancer diagnosis and its terminal nature, being shocked and devastated, and not knowing what to expect as the biological factors that affect ACP.…”

“…A recent study demonstrated that a community-based palliative care intervention was a feasible way to engage rural-dwelling Latino adults with cancer in ACP conversations. 28 In this study, lay health advisors completed a 10-hour palliative care training program and partnered with palliative care nurses for consultation. 28 Another way to educate patients and caregivers is for advocacy groups to conduct events that bring attention to palliative care.…”

“…28 In this study, lay health advisors completed a 10-hour palliative care training program and partnered with palliative care nurses for consultation. 28 Another way to educate patients and caregivers is for advocacy groups to conduct events that bring attention to palliative care. One such event is called the Hello Game, an innovative interactive palliative care game that facilitates EOL conversations.…”