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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Background: Palliative care (PC) plays a crucial role in improving the quality of life for terminally ill patients and their families. In Saudi Arabia, the Reform of Healthcare Vision 2030 has recognized the importance of PC and aimed to enhance its availability and quality. Objectives: This study evaluates the current state of PC in Saudi Arabia post-Vision 2030 reforms. ⋯ The study highlights the substantial need for PC for both cancer and noncancer patients, emphasizing the importance of expanding these services. Conclusions: To further improve PC, policymakers and stakeholders should prioritize resource allocation, health care workforce, and access to pain medications. These efforts will address the growing demand for PC and benefit terminally ill patients and their families in Saudi Arabia.
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Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. ⋯ Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.
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Background: Understanding interventions preceding death in children with immunocompromised conditions is important to ensure a peaceful and dignified perideath experience. The aim of this study was to describe the number of interventions performed in the pediatric intensive care unit (PICU) within the 48 hours before death in this population. Methods: This was a single-center, retrospective cohort study of all children with an underlying oncologic, hematologic, or immunologic diagnosis admitted to the PICU for at least 72 hours between 2014 and 2021. ⋯ Conclusions: Children in the PICU with underlying immunocompromised conditions frequently receive interventions within the 48-hour period preceding death. Palliative care involvement was associated with fewer radiographic studies and fewer occurrences of CPR. The impact of interventions on the dying experience warrants further investigation.
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Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. ⋯ An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.