Addressing Palliative Care Needs Among Intensive Care Unit Family Members

The quality of palliative care is highly variable in an intensive care unit (ICU) setting.
These markers of poor quality are even more common among Black patients and families than
among Whites. To address these challenges, the investigators developed a mobile app that
allows families to both give and receive information relevant to palliative care and for ICU
clinicians to visualize patient/family data and therefore better support them.

To determine the effect of this intervention,the investigators propose to conduct a
randomized clinical trial (RCT) comparing the intervention to usual care to address four
specific aims: (1) Using a cluster randomized clinical trial, determine the effect of the
intervention vs usual care on unmet needs [as measured by the NEST scale] and
patient-centered care [as measured by the IPC scale], (2) Determine the impact of the
intervention on unmet needs and patient-centered care based across different racial groups,
and (3) Explore family member and clinician experiences with intervention using mixed methods
to understand mechanisms within unique case contexts [exploratory aim]. The investigators
hypothesize that compared to usual care, PCneeds will reduce family members' unmet needs,
increase the patient-centeredness care, and reduce hospital length of stay overall--though
the magnitude of effect will be greater among Blacks compared to Whites.

PATIENTS

Inclusion Criteria:

- ≥18 years of age

- in a study ICU for ≥24 hours

- mechanical ventilation for ≥2 calendar days

- extubation from mechanical ventilation not expected within 24 hours

- death not expected within 24 hours

Exclusion Criteria:

- Decisional capacity

- Mechanical ventilation for ≥7 days (e.g., ventilation at outside facility before
transfer)

FAMILY MEMBER

Inclusion Criteria:

- ≥18 years of age

- self-described as the individual (related or unrelated) who provides the most support
and with whom the patient has a significant relationship (per definition of 'family'
described in the Society of Critical Care Medicine 2016 Guidelines for Family-Centered
Care in the Neonatal, Pediatric, and Adult ICU)

Exclusion Criteria:

- low need burden (NEST score <20)

- lack a knowledge of English such that the potential participant is not confident that
they could complete study tasks (app viewing, surveys)

ICU PHYSICIANS

Inclusion Criteria:

- ≥18 years of age

- caring for patient of interest on day of family member informed consent

Exclusion Criteria:

- None