Breaking Down Silos: Consensus-Based Recommendations for Improved Content, Structure, and Accessibility of Advance Directives in Emergency and Out-of-Hospital Settings.

Patients receiving palliative care often interact with a variety of health care providers across various settings. While patients may experience good care from these services, the connection between these can be disjointed as care providers may work siloed from each other. This is particularly true in out-of-hospital and hospital emergency settings, where providers have no prior knowledge of the patient, particularly their advanced directives (ADs) and goals of care.

Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis.

Cystic fibrosis (CF) has been transformed from a fatal diagnosis in infancy to a chronic disease of children and young adults. Symptom patterns and disease burden in CF may be shifting to reflect the relatively healthier, older population with the disease. Self-management of symptoms is a hallmark of chronic illness, and yet we do not have a good understanding of how CF patients monitor or manage their symptoms.

Ensuring pain relief for children at the end of life.

Pain management in the context of pediatric palliative care can be challenging. The present article reviews, through a case-based presentation, the nonpharmacological and pharmacological methods used to ensure adequate pain control in children facing end of life. Details on the impressive range of opioid dosages required and routes of administration are highlighted from published literature and clinical experience.

Psychosocial needs of families with a child with cancer.

Purpose: The aims of this study were to map the problems and needs of children with cancer and their families with regard to possible psychosocial interventions, and to do an acceptability study of different ways to provide support.

Methods: The authors performed a cross-sectional structured telephone interview with 56 parents of children with cancer and 13 adolescents from these families. On 0 to 10 analog scales, parents and adolescents rated the importance of different needs, how these needs had been met, the acceptability of different ways of providing supportive interventions, how often these ways had been used, and comfort using them.