Personalized Experiences to Inform Improved Communication for Minorities With Life Limiting Illness

Racial and ethnic minority patients with a Life Limiting Illnes (LLI) in the United States
are underserved in many ways, including quality of palliative care. Specific disparities have
been reported in palliative care for minority patients, including sub-optimal
patient-provider communication and resulting lower QoL. A potential approach to improve
communication is to elicit patients' personal narratives that address their cultural or
spiritual values and beliefs, and include them in the EHR. The objective of this
observational study is to assess the feasibility and efficacy of a palliative care nursing
intervention designed to 1) identify barriers and facilitators for eliciting and recording
relevant narratives from the perspectives of the key stakeholders: minority patients with
LLI; 2) to conduct usability testing, applying a user-system-environment evaluation process
to determine essential requirements for integration of the patient-centered narratives into
the EHR; and 3) identify barriers and facilitators of integration of the patient's narrative
into daily workflow from the perspectives of key stakeholders: acute care bedside nurse.

Inclusion Criteria: Patients

- 18 years of age or older

- able to read English

- capable of giving informed consent

- self-identifying as part of a racial or ethnic minority

- diagnosed with at least one LLI. The operational definition of LLI eligible for this
study includes the following diagnoses:

1. metastatic solid cancer or inoperable lung cancer;

2. COPD with FEV1 values < 35% predicted or oxygen dependence;

3. New York Heart Association Class III or IV heart failure (CHF).

Inclusion criteria: Nurse

- 18 years of age or older

- Confirm verbally that they were involved in the care of a patient who is participating
in the storytelling intervention