Jaramillo, Carolina

Objectives: Research indicates that the increasing population of over 25 million people in the United States who have limited English proficiency experience differences in decision-making and subsequent care at end of life in the ICU when compared with the general population. The objective of this study was to assess the perceptions of healthcare team members about the factors that influence discussions and decision-making about end of life for patients and family members with limited English proficiency in the ICU. Design: Qualitative study using semistructured interviews with ICU physicians, nurses, and interpreters. Setting: Three ICUs at Mayo Clinic Rochester. Subjects: Sixteen ICU physicians, 12 ICU nurses, and 12 interpreters. Intervention: None. Measurements and Main Results: We conducted 40 semistructured interviews. We identified six key differences in end-of-life decision-making for patients with limited English proficiency compared with patients without limited English proficiency: 1) clinician communication is modified and less frequent; 2) clinician ability to assess patient and family understanding is impaired; 3) relationship building is impaired; 4) patient and family understanding of decision-making concepts (e.g., palliative care) is impaired; 5) treatment limitations are often perceived to be unacceptable due to faith-based and cultural beliefs; and 6) patient and family decision-making styles are different. Facilitators of high-quality decision-making in patients with limited English proficiency included: 1) premeeting between clinician and interpreter; 2) interpretation that communicates empathy and caring; 3) bidirectional communication of cultural perspectives; 4) interpretation that improves messaging including appropriate word choice; and 5) clinician cultural humility. Conclusions: End-of-life decision-making is significantly different for ICU patients with limited English proficiency. Participants identified several barriers and facilitators to high-quality end-of-life decision-making for ICU patients and families with limited English proficiency. Awareness of these factors can facilitate interventions to improve high-quality, compassionate, and culturally sensitive decision-making for patients and families with limited English proficiency.

Increased prenatal diagnoses of sex chromosome aneuploidies (SCAs) amid limited knowledge of their prognoses heighten the need to understand how families contend with the implications of an SCA. To explore the experiences of parents and individuals who received a genetic diagnosis of an SCA (excluding Turner syndrome), we conducted semistructured qualitative telephone interviews with 43 participants affected by these conditions. Parents (n = 35) and individuals (n = 8) expressed almost unanimous interest in more optimistic portrayals of their condition from their providers, even when the prognosis is uncertain. While some participants reported success in receiving accurate information from their provider and identifying supportive resources, numerous families received outdated or misleading information about their condition and lacked direction in accessing follow-up care and support. Parents desire greater coordination of their child’s medical care and access to care that approaches an SCA holistically. Opportunities remain to improve the diagnosis and care of individuals with SCAs.

Background: Socioeconomic status (SES) is an important determinant of disparities in health care and may play a role in end-of-life care and decision-making. The SES is difficult to retrospectively abstract from current electronic medical records and data sets. Objective: Using a validated SES measuring tool derived from home address, the HOUsing-based SocioEconomic Status index, termed HOUSES we wanted to determine whether SES is associated with differences in end-of-life care and decision-making. Design/Setting/Participants: This cross-sectional study utilized a cohort of Olmsted County adult residents admitted to 7 intensive care units (ICUs) at Mayo Rochester between June 1, 2011, and May 31, 2014. Measurements: Multiple variables that reflect decision-making and care at end of life and during critical illness were evaluated, including presence of advance directives and discharge disposition. The SES was measured by individual housing-based SES index (HOUSES index; a composite index derived from real property as a standardized z-score) at the date of admission to the ICU which was then divided into 4 quartiles. The greater HOUSES, the higher SES, outcomes were adjusted for age, 24-hour Acute Physiology and Chronic Health Evaluation III score, sex, race/ethnicity, and insurance. Results: Among the eligible 4134 participants, the addresses of 3393 (82%) were successfully geocoded and formulated into HOUSES. The adjusted odds ratios comparing HOUSES 1 versus 2, 3, and 4 demonstrated lower likelihood of advance directives −0.77(95% CI: 0.63-0.93) and lower likelihood of discharge to home −0.60(95% CI: 1.0.5-0.72). Conclusion: Lower SES, derived from a composite index of housing attributes, was associated with lower rates of advance directives and lower likelihood of discharge to home.