Journal of palliative medicine
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Objectives: An increasing number of children are living with complex chronic diseases (CCDs) due to medical advances. Despite a need for code status discussions (CSDs), there is great variability in the frequency and documentation of such conversations. The objective was to identify gaps in the documentation of CSDs within the electronic health record (EHR), focusing on patients with CCDs. Methods: This was a retrospective review of all patients admitted from the emergency department of a tertiary care children's hospital in 2016. ⋯ Of 528 (4.2%) patients ≥18 years of age, 428 (81.1%) had CCD and only 65 (12.3%) had CSDs. Palliative care consultation increased odds of CSDs (OR: 21.4, 95% CI: 13.8-33.2, p < 0.0001), whereas African American race decreased odds of CSDs (OR: 0.42, 95% CI: 0.27-0.64, p < 0.0001). Conclusions: Among admitted pediatric patients, most do not have documentation of CSDs, including those with CCD and patients ≥18 years of age. Improvements in both frequency and consistency of CSD documentation are needed to inform the family-centered care of patients living with CCDs.
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Background: Understanding end-of-life (EOL) and palliative care continues to grow. However, little attention has been paid to the experiences, preferences, and needs of older lesbian, gay, bisexual, transgender, and queer (LGBTQ) women. While some universal expectations or preferences at EOL exist, this population may not receive adequate or appropriate attention or reporting of unique EOL issues and experiences. ⋯ Articles described several concerns for the overall LGBTQ population; however, additional issues and experiences specific to older LGBTQ women were also identified, including vulnerability associated with isolation and poverty, women's social needs and support networks, and preferences for complementary care. Conclusion: There remains a need for further research with older LGBTQ women concerning palliative and EOL care, particularly around preparation for EOL and preferences for support. Inclusion of diverse populations in terms of sexual and gender identification are needed to fully understand how to provide appropriate and preferred support.