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  • 1
    Online Resource
    Online Resource
    SAGE Publications ; 2023
    In:  Clinical Ethics Vol. 18, No. 2 ( 2023-06), p. 264-270
    In: Clinical Ethics, SAGE Publications, Vol. 18, No. 2 ( 2023-06), p. 264-270
    Abstract: Shared decision-making is a well-recognized model to guide decision-making in medical care. However, the shared decision-making concept can become exceedingly complex in adolescent patients with varying degrees of autonomy who have most of their medical decisions made by their parents or legal guardians. The complexity increases further in ethically difficult situations such as terminal illness. In contrast to the typical patient-physician dyad, shared decision-making in adolescents requires a decision-making triad that also includes the parents or guardians. The multifactorial nature of these cases can overwhelm treatment teams, with minimal guidance on how to best approach the patient–parents–physician dynamic in an ethically appropriate manner. Estimated time left to live is the paramount ethical consideration for such cases with respect to shared decision-making. This paper offers a sliding scale to serve as a grounding reference for clinicians who care for terminally ill adolescents and hospital ethics committee members for initiating and guiding the ethical discussion for these patients. This paper also elucidates several other ethically salient features inherent to many of these cases, including quality of life, treatability of disease, cultural influences, among others. Yet how each of these variables is weighed is dependent upon the specific circumstances of each individual case. Ultimately, shared decision-making in adolescent patients with terminal illnesses must be a collaborative and ongoing process that thoughtfully weighs the values and ethical responsibilities of the patient, parents, and physician to ideally reconcile differences and come to a consensus on the best management option for each individual patient.
    Type of Medium: Online Resource
    ISSN: 1477-7509 , 1758-101X
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2023
    detail.hit.zdb_id: 2231775-2
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  • 2
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2022
    In:  Journal of Clinical Oncology Vol. 40, No. 28_suppl ( 2022-10-01), p. 161-161
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 40, No. 28_suppl ( 2022-10-01), p. 161-161
    Abstract: 161 Background: Survival has significantly improved for patients with head and neck cancer (HNC) in the last decade in the US. Unfortunately, social determinants of health continue to impact patient outcomes. HPV vaccine uptake and access to quality end-of-life care vary notably between geographic areas. We investigated potential disparities in rural-urban age-adjusted mortality rates (AAMRs) and place of death for individuals with head and neck cancer (HNC). Methods: We used the CDC WONDER database to identify patients who died from HNC between 2003 and 2019 within the following 2013 US Census population classifications: large metropolitan (≥1 million), medium/small metropolitan (50,000-999,999), and rural areas ( 〈 50,000). AAMR (per 100,000 individuals) was stratified by geographic area, age, and race/ethnicity. Annual percentage changes (APC) in AAMR were estimated with linear regression models of the log-scale AAMR (including population size as weights) and differential changes over time by geographic area were assessed with interaction tests. Odds ratios (OR) for the association between each place of death and individual-level characteristics were calculated using logistic regression, adjusting for year of death. Results: From 2003 to 2019, 221,861 deaths related to HNC occurred (48.5% large metropolitan, 31.9% medium/small metropolitan, 19.7% rural). Total AAMR declined from 6.7 to 5.8 during this period. Rural areas consistently had a higher AAMR and also slower annual improvement over time (APC –0.11; 95% CI, –0.36 to 0.13; p 〈 0.001) than medium/small metropolitan (APC –0.51; 95% CI, –0.78 to 0.24) and large metropolitan areas (APC –1.19; 95% CI, –1.39 to –1.0; p 〈 0.001). Non-Hispanic (NH) Black patients had the highest overall AAMR, but quickest annual improvement (APC –2.91; 95% CI, –3.28 to –2.55; p 〈 0.001) compared to Hispanic (APC -1.42, 95% CI, -1.9 to -0.93) and NH White patients (APC –0.26, 95% CI, –0.44 to 0.07). Individuals in rural areas died less often in a hospice facility (5.6% rural vs 10.8% large metropolitan vs 12% medium/small metropolitan) and slightly more often at home (46.3% rural vs 40.1% large metropolitan vs 43.7% medium/small metropolitan). Relative to patients in rural areas, patients in large metropolitan (OR 1.77; 95% CI, 1.74 to 1.81) and medium/small metropolitan areas (OR 2.27; 95% CI, 2.23 to 2.31) had higher odds of dying in a hospice facility compared to a medical facility. Conclusions: Rural residents with HNC experienced higher mortality rates and had lesser improvement compared to urban areas, with notable sociodemographic differences, and disparities in place of death. Public health interventions to combat health inequities for patients with HNC are required. Further, as EOL care is increasingly complex and the role of unpaid caregiving burdensome, policy interventions targeted to support disadvantaged populations and communities are urgent and necessary.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2022
    detail.hit.zdb_id: 2005181-5
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  • 3
    Online Resource
    Online Resource
    Wiley ; 2021
    In:  The Milbank Quarterly Vol. 99, No. 2 ( 2021-06), p. 519-541
    In: The Milbank Quarterly, Wiley, Vol. 99, No. 2 ( 2021-06), p. 519-541
    Abstract: Policy Points An estimated 700,000 people in the United States have “long COVID,” that is, symptoms of COVID‐19 persisting beyond three weeks. COVID‐19 and its long‐term sequelae are strongly influenced by social determinants such as poverty and by structural inequalities such as racism and discrimination. Primary care providers are in a unique position to provide and coordinate care for vulnerable patients with long COVID. Policy measures should include strengthening primary care, optimizing data quality, and addressing the multiple nested domains of inequity.
    Type of Medium: Online Resource
    ISSN: 0887-378X , 1468-0009
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2021
    detail.hit.zdb_id: 1482881-9
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