Journal of palliative medicine
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Advance care planning (ACP) is recommended for people with cystic fibrosis (CF), yet guidance for optimal implementation is lacking. ⋯ People with CF worry about advanced disease and feel comfortable discussing ACP, but need more guidance to understand and document ACP choices. CF patient experiences and preferences support implementation of an early, active approach to ACP for people with CF.
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This study examines health care provider perspectives about barriers to pediatric palliative care for seriously ill children 15 years after an initial study within the same academic health system. ⋯ Barriers to palliative care for hospitalized children persist and commonly include perceptions that families deny, prefer, or have discomfort with forgoing life-sustaining treatments. Increasingly, studies have shown that families can be simultaneously hopeful and aware of their child's worsening health. Further palliative care education and research about these barriers and their impacts are necessary to support seriously ill children and their families.