Palliative Care Commons^™

Caregiver Policies In The United States: A Systematic Review, Makenna R. Green, M. Courtney Hughes, Sadia Afrin, Erin Vernon

Faculty Articles, Papers, and Other Scholarship

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In the United States, there are nearly 53 million informal or unpaid caregivers, many of whom experience mental and physical stress related to their caregiving duties and increased financial responsibility. We identified federal and state informal caregiver support policies authorized by specific legislation along with their key provisions and conducted a systematic review of the academic literature related to quantitative evaluations of these policies. Twenty policies, eight academic studies, and four gray literature reports were included in the study, with half of the policies introduced since 2000. Our study criteria yielded few academic valuations tied to caregiver policies and few …

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Us Hospices’ Approach To Racial/ Ethnic Minority Inclusion: A Qualitative Study, M. Courtney Hughes, Erin Vernon, Monica Kowalczyk, Marlon Basco-Rodillas

Faculty Articles, Papers, and Other Scholarship

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Objective: To examine hospices’ approaches to improving the current racial/ethnic hospice utilisation disparity.

Methods: During June and July 2020, we conducted in-depth, semistructured interviews with 22 hospice leaders from across the USA. The interviews focused on inclusive strategy approaches. We analysed the data using qualitative methods.

Results: Multiple themes emerged about racial/ ethnic minority inclusion strategies: (1) hospices tailor strategies to the local communities they serve; (2) improvement involves addressing social determinants of health that extend beyond end-of-life care; (3) costs of strategies are not a primary concern and the benefits are worth the costs; and (4) hospices want to …

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Measuring Decision Aid Effectiveness For End-Of-Life Care: A Systematic Review, M. Courtney Hughes, Erin Vernon, Chinenye Egwuonwu, Oluwatoyosi Afolabi

Faculty Articles, Papers, and Other Scholarship

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Objective

To systematically review research analyzing the effectiveness of decision aids for end-of-life care, including how researchers specifically measure decision aid success.

Methods

We conducted a systematic review synthesizing quantitative, qualitative, and mixed-methods study results using Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. Four databases were searched through February 18, 2023. Inclusion criteria required articles to evaluate end-of-life care decision aids. The review is registered under PROSPERO (#CRD42023408449).

Results

A total of 715 articles were initially identified, with 43 meeting the inclusion criteria. Outcome measures identified included decisional conflict, less aggressive care desired, knowledge improvements, communication improvements, tool …

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Always Politically Correct: Supporting Seriously Ill Older Populations And Their Families, M. Courtney Hughes, Erin Vernon

Faculty Articles, Papers, and Other Scholarship

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We have been researching outcomes related to seriously ill individuals for over a decade, critically examining countless research articles from around the world, and extensively interviewing various stakeholders in this space, including hospital leaders, hospice leaders, lobbyists, nurses, social workers, and informal caregivers. We have also experienced firsthand the heartwrenching difficulty of caring for seriously ill loved ones. While we have learned a tremendous amount along the way, two specific observations consistently stand out. First, regardless of culture, income level, or politics, most people can personally identify with caring for seriously ill individuals. Second, the research evidence indicates that not …

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Hospice Capacity To Provide General Inpatient Care: Emergency Department Utilization And Live Discharge Among Cancer Patients, Kyusuk Chung, M. Courtney Hughes, Sara Rahmanian Koushkaki, Mia Richelle Risberg, Michelle Alcantara, Jennifer M. Amico

Faculty Articles, Papers, and Other Scholarship

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General inpatient (GIP) hospice care is used only minimally for hospice patients, and more than a quarter of Medicare hospice facilities do not provide GIP care. To determine the impact of hospices’ capacity to provide on emergency department use during hospice enrollment and live discharge from hospice, we used Surveillance, Epidemiology, and End Results-Medicare linked data and CMS Provider of Services data from 2007 to 2013 from ten states and two metropolitan regions. Grouping hospices into three GIP care provision categories: 1) no-GIP; 2) GIP-contract; and 3) GIP-IHF where hospices directly provide GIP care in their own inpatient hospice facility …

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Hospice Response To Covid-19: Promoting Sustainable Inclusion Strategies For Racial And Ethnic Minorities, M. Courtney Hughes, Erin Vernon

Faculty Articles, Papers, and Other Scholarship

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There is a disproportionate burden of illness and death among racial/ethnic minorities related to COVID-19. The importance of reaching groups suffering the most with resources such as advance directive guidance, telehealth, and culturally sensitive education materials is vital to providing quality, inclusive care. A crisis presents an opportunity to unite and problem-solve to help avoid the dire consequences facing inaction. In this way, inclusive responses by hospices, social workers, other community partners during the COVID-19 pandemic can help reach and alleviate the pain of those groups most afflicted. We offer hospice inclusion strategies that align with general pandemic response trends …

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