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Minority patients receive more aggressive and potentially suboptimal care at the end of life (EOL). We investigated preferences about pharmacologic interventions at the EOL and their potential variation by sociodemographic factors among recently diagnosed cancer patients.
A population-based cross-sectional survey of cancer patients identified through the Texas Cancer registry was conducted using a multi-scale inventory between March 2018 and June 2020. Item responses to questions about potential pharmacologic interventions at the EOL were the focus of this investigation. Inverse probability weighted multivariate analysis examined associations of sociodemographic characteristics, health literacy, and trust in medical professionals with pharmacologic preferences.
Of the 1480 included responses, 13.3% stated they would take a medication that may prolong life at the cost of feeling worse. Adjusted analyses showed Black or Hispanic race/ethnicity, living with another person, and having a higher trust score were more likely to express this preference. In contrast, 41-65 years (vs. 21-40 years), living in a rural area, and adequate or unknown health literacy were less likely to express this preference. Overall 16% of respondents were opposed to potentially life shortening palliative drugs. In adjusted analysis Black or Hispanic respondents were more likely to be opposed to potentially life shortening drugs although age 65-79 and ≥college education were associated with a decreased likelihood of opposition to this item.
Black and Hispanic cancer patients were more likely to express preferences toward more aggressive EOL pharmacologic care. These findings were independent of other sociodemographic characteristics, health literacy and trust in the medical profession.
Black and Hispanic cancer patients were more likely to express preferences toward more aggressive EOL pharmacologic care. These findings were independent of other sociodemographic characteristics, health literacy and trust in the medical profession.
Among adults with cancer, measures for high quality end-of-life care (EOLC) include avoidance of hospitalizations near end of life. For children with cancer, no measures exist to evaluate or improve EOLC, and adult quality measures may not apply.
We engaged key stakeholders to explore EOLC priorities for children with cancer and their families, and to examine relevance of existing adult EOLC quality measures for children with cancer.
In a multicenter qualitative study, we conducted interviews and focus groups with adolescents and young adults (AYAs) with advanced cancer, parents of children with advanced cancer, bereaved parents, and interdisciplinary healthcare professionals. We transcribed, coded, and employed thematic analysis to summarize findings.
We enrolled 54 stakeholders (25 parents [including 12 bereaved parents], 10 AYAs, and 19 healthcare professionals). Participants uniformly prioritized direct communication with children about preferences and prognosis, interdisciplinary care, symptom ma focus on developing techniques for person-centered quality measurement to capture attributes of greatest importance to children with cancer and their families.
Systematic data on the care of people dying with COVID-19 are scarce.
To understand the response of and challenges faced by palliative care services during the COVID-19 pandemic, and identify associated factors.
We surveyed palliative care and hospice services, contacted via relevant organizations. Multivariable logistic regression identified associations with challenges. Content analysis explored free text responses.
A total of 458 services responded; 277 UK, 85 rest of Europe, 95 rest of the world; 81% cared for patients with suspected or confirmed COVID-19, 77% had staff with suspected or confirmed COVID-19; 48% reported shortages of Personal Protective Equipment (PPE), 40% staff shortages, 24% medicines shortages, 14% shortages of other equipment. Services provided direct care and education in symptom management and communication; 91% changed how they worked. Care often shifted to increased community and hospital care, with fewer admissions to inpatient palliative care units. Factors associated with increased odds of PPE shortages were charity rather than public management (OR 3.07, 95% CI 1.81-5.20), inpatient palliative care unit rather than other settings (OR 2.34, 95% CI 1.46-3.75). Being outside the UK was associated with lower odds of staff shortages (OR 0.44, 95% CI 0.26-0.76). this website Staff described increased workload, concerns for their colleagues who were ill, whilst expending time struggling to get essential equipment and medicines, perceiving they were not a front-line service.
Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics.
Palliative care services were often overwhelmed, yet felt ignored in the COVID-19 response. Palliative care needs better integration with health care systems when planning and responding to future epidemics/pandemics.Heathcare Workers (HCWs) recognize their responsibility to support the bereaved loved ones of our patients, but we also must attend to our own professional and personal grief in the COVID-19 pandemic. COVID-19 grief is occurring in the setting of incomplete grief, disenfranchised grief, fractured US governmental leadership, and evidence of great mistrust, systemic racism, and social injustice. In the intensity and pervasiveness of COVID-19, HCW fears for themselves, their colleagues, and their own loved ones are often in conflict with professional commitments. Even at the dawn of promising national and global vaccination programs, significant HCW morbidity and mortality in COVID-19 has already become clear, will continue to grow, and these effects likely will last far into the future. Given the risks of complicated grief for HCWs in the setting of COVID-19 deaths, individual HCWs must put every effort into their own preparation for these deaths as well as into their own healthy grieving. Equally importantly, our healthcare systems have a primary responsibility both to prepare HCWs and to support them in their anticipatory and realized grief.
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