The law has a clear role to play in supporting patients and their substitute decision-makers (SDMs) to be involved in end-of-life (EOL) decision-making. Although existing literature suggests that knowledge of EOL law is variable among health professionals, there is little information about the extent and sources of such knowledge within the general community. A telephone survey of a representative sample of adults in three Australian States used six case scenarios to examine the extent to which adults know their legal duties, rights and powers as patients or SDMs; the sources from which people derive relevant legal knowledge; experiences of EOL decision-making; and individual characteristics associated with levels of knowledge. The results show considerable variation in levels of legal knowledge dependent primarily of the area of decision-making presented, some sizeable gaps in people's knowledge of EOL law, and varied awareness of how to access appropriate information on this subject. This study points to the need to increase community legal literacy around EOL decision-making, enhance awareness of the role of law in these circumstances and promote the availability of reliable and accessible information on the law at the time when it is needed.
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Hematology Am Soc Hematol Educ Program
December 2024
Institute for Cancer Outcomes and Survivorship, University of Alabama at Birmingham, Birmingham, AL.
End-of-life (EOL) care is a critical part of sickle cell disease (SCD) management. However, barriers to high-quality EOL care remain, including (1) disease-related barriers (prior opioid exposure, risk of vaso-occlusive crises, chronic conditions with conflicting needs, and limitations of receiving disease-directed therapy on hospice); (2) communication-related barriers (challenges of identifying and responding to religious and spiritual concerns, limited health literacy, and previous health care system experience); (3) systemic issues (social determinants of health, structural racism, and mistrust of the medical system). However, palliative care and interdisciplinary collaboration can overcome many of these barriers.
View Article and Find Full Text PDFOncologist
November 2024
Department of Supportive and Palliative Care, Institut Paoli-Camettes, Aix-Marseille Univ, CNRS, INSERM, Marseille, France.
Background: While the use of chemotherapy near the end of life (EOL) has been identified as a relevant criterion for assessing quality of cancer care and has been estimated as non-beneficial, a trend of aggressiveness in cancer care during the last period of life remains. Both patients' sociodemographic characteristics and physicians' practice setting are associated with this use. The role of patients' psychosocial characteristics has however been understudied.
View Article and Find Full Text PDFNeurooncol Pract
December 2024
Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York, USA.
Background: Glioblastoma and high-grade glioma (HGG) remain non-curable diseases. Symptoms and Quality-of-life (QoL) in the end-of-life (EoL) phase have not been prospectively studied with validated instruments. Therefore, we prospectively assessed symptom progression, symptom management, and hospice utilization in patients with treatment-refractory progressive HGG.
View Article and Find Full Text PDFPLoS One
November 2024
Research and Teaching Institute, Hospital Sírio-Libanês, São Paulo, Brazil.
Background And Aim: This study investigated whether providers respected patient's autonomy, investigating providers' pattern of decisions and their associated characteristics.
Methods: Cross-sectional study, conducted through anonymous questionnaire with hypothetical clinical cases, presented to providers at one oncology center. Decision-making patterns were pre-stablished accordingly to the response´s pattern.
BMC Palliat Care
November 2024
Department of Medicine & Geriatrics, United Christian Hospital, Kwun Tong, Hong Kong.
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