Journal of palliative medicine
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Randomized Controlled Trial
Development, feasibility, and acceptability of the Family/Adolescent-Centered (FACE) Advance Care Planning intervention for adolescents with HIV.
To develop, adapt, and ensure feasibility, acceptability, and safety of the Family/Adolescent-Centered (FACE) Advance Care Planning intervention. ⋯ Existing advance care planning models can be adapted for age, disease, and culture. Adolescents with HIV/AIDS were satisfied with an advance care planning approach that facilitated discussion about their end-of-life wishes with their families. Families acknowledged a life-threatening condition and were willing to initiate end-of-life conversations when their adolescents were medically stable.
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Health care providers have reported inadequate training, poor institutional support, and discomfort in managing pediatric end-of-life (EOL) issues. As a result, the transition to palliative care may be late and abrupt, and children may experience significant suffering at EOL. In this pilot study, we developed and longitudinally evaluated the efficacy of a pediatric palliative care workshop to enhance training for medical fellows. ⋯ Although perceived competence and comfort with palliative care improved, the workshop did not uniformly produce lasting improvements in knowledge. Sustained knowledge will likely require more intensive training in palliative care. Continued research and evaluation of similar educational programs are needed.
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There is a tenfold variation across U.S. states in the prevalence of feeding tube use among elderly nursing home residents (NHR) with advanced cognitive impairment. The goal of this study was to examine whether regions with higher rates of health care transitions at the end of life are more likely to use feeding tubes in patients with severe cognitive impairment. ⋯ Regions with higher rates of care transitions among nursing home residents are also much more likely to have higher rates of feeding tube placement for patients with severe cognitive impairment, a population in whom benefit is unlikely.
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There are few data describing symptom prevalence in children with cancer. The available literature suggests that similar to adults, symptom prevalence and distress are high and that communication regarding end-of-life care needs is limited. ⋯ PCC, although late in the course, resulted in the detection of multiple symptom control and communication needs, and corresponding treatment recommendations.
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Case Reports
Palliative ventriculoperitoneal shunt in a pediatric patient with recurrent metastatic medulloblastoma.
The authors present a case report of a pediatric patient with recurrent metastatic medulloblastoma who demonstrated significant clinical improvement after placement of a palliative ventriculoperitoneal (VP) shunt. They also review the medical literature that supports palliative surgical management of hydrocephalus and intracranial hypertension (ICH) caused by leptomeningeal (LM) spread of malignancy. The burdens and benefits of an invasive surgical procedure must always be weighed carefully, especially at end-of-life. Yet for some patients with LM spread and ICH, VP shunting may improve their quality of life, although their prognosis remains poor.