Journal of palliative medicine
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Introduction: Advancement in medical expertise and technology has led to a growing cohort of children with medical complexity (CMC), who make up a rising proportion of childhood deaths. However, end of life in CMC is poorly understood and little is known about illness trajectories, communication, and decision-making experiences. Objective: To synthesize existing literature and characterize the end-of-life experience in CMC. ⋯ Qualitative studies highlighted the following themes: Intrinsic prognostic uncertainty, differing perspectives of the child's quality of life, the chronic illness experience, a desire to have parental expertise acknowledged, surprise at the terminal event, the experience of multiple losses, with an overarching theme of the need for compassionate care at end of life. Conclusions: This scoping review highlighted important characteristics of end of life in CMC, outlining the emerging evidence and knowledge gaps on this topic. A better understanding of this cohort of seriously and chronically ill children would serve to inform clinical practice, service development, and future research.
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Randomized Controlled Trial
Impact of Animal-Assisted Interaction on Anxiety in Children With Advanced Cancer and Their Caregivers.
Background: Pediatric patients with advanced cancer and their caregivers have unique psychosocial needs. Anxiety often worsens throughout treatment for both patients and parents, and, if undertreated, can cause suffering. Animal-assisted interaction (AAI) incorporates animals into patient care in a structured manner for the purpose of therapeutic benefit. ⋯ The difference in initial STAI State anxiety scores for caregivers may indicate a positive effect of AAI in reducing anxiety surrounding appointments through anticipation of seeing a therapy dog. Conclusion: Further research is needed to determine the effectiveness of AAI in pediatric patients with advanced cancer and their caregivers, but results are promising that participation in AAI may lessen caregiver anxiety. Clinical Trial Registration Number is: NCT03765099.
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Objectives: We hoped to understand (1) how parents of seriously ill neonatal intensive care unit patients conceptualize neonatal serious illness, and (2) how parent and physician perspectives on neonatal serious illness might differ. Design: This was a prospective survey study. Setting/Subjects: Parent members of the Courageous Parents Network. ⋯ At the same time, parent responses revealed important differences in perceptions about serious illness between parents and physicians. In addition, parents will likely use any definition of neonatal serious illness differently than clinicians. We therefore propose that our definition be used to identify neonates with serious illness for the purposes of research and clinical care, but should not be used verbatim for communication with parents.
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The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. ⋯ Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.
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Background: The development of major depressive disorder in patients at end of life often goes undiagnosed, as it is difficult to distinguish from preparatory grief and/or hypoactive delirium in this unique patient population. If this preliminary barrier of appropriate diagnosis is overcome, it can be quite difficult to properly select and adjust pharmacological therapy. ⋯ Case: We present a case report of severe treatment-resistant depression in an end-stage heart failure patient enrolled in hospice care. Discussion: We discuss the potential use of a single low-dose intravenous racemic ketamine infusion to reduce end-of-life suffering related to depression, despite the theoretical contraindication of ketamine use in such patients, in part, due to its sympathomimetic secondary effect.