A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.
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http://dx.doi.org/10.1542/peds.2023-064830 | DOI Listing |
BMC Med Inform Decis Mak
December 2024
Nivel, Netherlands Institute for Health Services Research, Otterstraat 118, Utrecht, 3513 CR, The Netherlands.
Background: At the beginning of the COVID-19 pandemic in 2020, little was known about the spread of COVID-19 in Dutch nursing homes while older people were particularly at risk of severe symptoms. Therefore, attempts were made to develop a nationwide COVID-19 repository based on routinely recorded data in the electronic health records (EHRs) of nursing home residents. This study aims to describe the facilitators and barriers encountered during the development of the repository and the lessons learned regarding the reuse of EHR data for surveillance and research purposes.
View Article and Find Full Text PDFBMC Palliat Care
December 2024
The Palliative Care Center, Päijät-Häme Wellbeing Services County, Lahti, Finland.
Background: Studies show that hospital deaths bring significant health care costs, and the involvement of specialized palliative care can help to reduce these costs. The aim of this retrospective registry-based study was to evaluate end-of-life hospital costs in patients dying in a university hospital oncology ward, with or without specialized palliative outpatient clinic contact at any timepoint.
Methods: The study population consists of all patients who died in the Kuopio University Hospital oncology ward in the years 2012-2018 (n = 457).
BMC Med Res Methodol
December 2024
Erasmus School of Health Policy and Management, Erasmus University Rotterdam, Rotterdam, the Netherlands.
Background: The aim of this study is to develop a method we call "cost mining" to unravel cost variation and identify cost drivers by modelling integrated patient pathways from primary care to the palliative care setting. This approach fills an urgent need to quantify financial strains on healthcare systems, particularly for colorectal cancer, which is the most expensive cancer in Australia, and the second most expensive cancer globally.
Methods: We developed and published a customized algorithm that dynamically estimates and visualizes the mean, minimum, and total costs of care at the patient level, by aggregating activity-based healthcare system costs (e.
Am J Emerg Med
December 2024
Department of Anesthesiology and Critical Care, All India Institute of Medical Sciences, Bhubaneswar, India.
Curr Opin Obstet Gynecol
October 2024
Department of Medicine, Palliative Care, University of California at Los Angeles, Los Angeles CA, USA.
Purpose Of Review: This review assesses the impact of early integration of palliative care and the disparities that exist among patients with gynecologic malignancies. It also highlights the recent advances in symptom management, goals of care communication, and end of life care.
Recent Findings: Although palliative care has been utilized earlier, there are still barriers to its integration both nationally and worldwide, manifesting as predominantly late hospice referrals and aggressive care at the end of life.
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