Apoyo Con Carino: Patient Navigation for Palliative Care for Non-Cancer Illness

Latinos are more likely to experience uncontrolled pain, institutional death, and are less
likely to engage in advance care planning. Efforts to increase access to palliative care must
maximize primary palliative care and community based models to meet the ever growing need in
a culturally-sensitive and congruent manner. Patient navigator interventions are community
based, culturally tailored models of care and have been successfully implemented to improve
disease prevention, early diagnosis and treatment. The investigators have developed and
implemented a patient navigation intervention to improve palliative care outcomes for
seriously ill hospitalized Latinos. They have demonstrated feasibility and early findings
suggest this intervention can improve palliative care outcomes for Latinos with advanced
cancer. Building on this prior research, the investigators propose a fully powered randomized
controlled trial to determine the effectiveness of the manualized patient navigator
intervention in a non-cancer population. A total of 240 Latino adults with non-cancer,
advanced medical illness enrolled from 8 urban and 4 rural clinical sites will be randomized
to the intervention group (5 palliative care-related patient navigator visits plus
educational materials) or control group (usual care plus educational materials). Participants
randomized to the intervention group will demonstrate better quality of life, will be more
likely to have a palliative approach to their care, have higher rates of advance care
planning, better pain and symptom control, and higher rates of hospice utilization compared
to the control group). They will conduct a cost analysis of the patient navigator
intervention by comparing direct costs of the intervention and cost and utilization of health
care system resources across the study arms. Participants randomized to the intervention will
have lower costs in the 6 months following study enrollment compared to participants in the
control arm. Decedent participants randomized to the intervention will have lower costs in
the last 3 months of life compared to decedent participants in the control arm. For the
intervention visits, bicultural, bilingual navigators (guias) integrate core Latino values,
while addressing barriers to a palliative approach through education, culturally tailored
messaging, and patient activation. Patients will be interviewed at baseline and 3 months
using the QUAL-E quality of life scale, Brief Pain Inventory, Edmonton Symptom Assessment
Scale, and the Patient Navigator Process and Outcomes Measure. Medical records will be
reviewed to assess advance directive completion, hospice and health care utilization and
intensity of care at the end of life. This culturally tailored, evidence-based, theory
driven, highly innovative patient navigation intervention has significant potential to
improve palliative care for Latinos, and facilitate true health equity in palliative and end
of life care.

Inclusion Criteria:

- Self-identify as Latino

- Age 18-90 years

- Not referred or enrolled in hospice care

- Meeting medium to high risk for death at 1 year using the CARING criteria (although
excluding patients with cancer diagnosis)

OR

- If health care provider answers "no" to the question: "Would you be surprised if this
patient died in the next year?"

Exclusion Criteria:

- Cancer diagnosis

- Referred or receiving hospice care

- Pregnant

- Incarcerated

- Lacking decisional capacity