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1.
AJOB Empir Bioeth ; : 1-14, 2022 Aug 22.
Artigo em Inglês | MEDLINE | ID: mdl-35994631

RESUMO

BACKGROUND: The COVID-19 pandemic continues to disrupt every society as SARs-CoV-2 variants surge among the populations. Health care providers are exhausted, becoming ill themselves, and in some instances have died. Indeed, hospitals are struggling to find staff to care for critically ill patients most in need. Previous work has reported on the unending work-related conditions that hospital staff are laboring under and their subsequent mental and physical health strains. Health care providers need support, but it is not clear where that support is to come from. While much research has reported on the COVID-19-related fears of nurses and physicians, fewer studies have focused on supportive features of the hospital work environment and how it may provide relief to front-line health care providers. PURPOSE: This purpose of this study was to explore an often-overlooked resource within hospital systems across the United States-clinical ethicists-and examine their many roles during COVID-19 and the types of ethical issues they addressed with nurses, physicians, administrators, and others. METHODS: This was a primary analysis of semi-structured, qualitative interviews with 23 clinical ethicists across the United States. The interviews were conducted from November 2020-April 2021 and were audiotaped, transcribed verbatim, and de-identified; both inductive and deductive analyses were used to identify qualitative themes. RESULTS: Five major themes were identified: ethical issues that were increasingly more complex, moral distress that was "endemic," shifting ethical paradigms from the focus on the individual to the population, fostering a supportive environment, and organizational ethics: variation in the value, roles, and policy input of clinical ethicists. CONCLUSIONS: Our findings report on the integral and expanded role of clinical ethicists at an unprecedented time in our nation, and how they stepped forward to support front-line clinicians in hospitals across the country.

2.
Perspect Biol Med ; 65(2): 274-282, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35938435

RESUMO

Of the more than 47 million people living with Alzheimer's disease or other types of dementia, an estimated one-third live alone. This essay explores the idea of the dignity of risk as it presents in the lives of people living alone with dementia, an underrepresented group in research, and considers the tension between safeguarding people with dementia from risks associated with disease progression and denying them the experience of risk as an aspect of everyday life. For individuals, risk is associated with vulnerability, choice, uncertainty, and the pursuit of goals, and may hold positive and negative connotations. This essay considers how myriad choices in the everyday lives of people living alone with dementia present some degree of risk, and how the ability to make these choices may constitute a life of dignity, replete with meaning and richness. The essay concludes with suggestions about how to reframe living alone with dementia as a way of living that can be better socially supported.


Assuntos
Demência , Ambiente Domiciliar , Humanos , Respeito , Incerteza
3.
Dementia (London) ; 21(4): 1200-1218, 2022 May.
Artigo em Inglês | MEDLINE | ID: mdl-35232292

RESUMO

BACKGROUND: Because use of a study partner (proxy decision-maker) to give informed consent on behalf of someone living with Alzheimer's disease or related dementias (ADRD) is common in nearly all clinical research, people living with ADRD who lack a study partner are regularly excluded from participation. Social research presents different opportunities and risks than clinical research. We argue that guidelines developed for the latter may be unduly restrictive for social research and, further, that the automatic exclusion of people living with ADRD presents separate ethical challenges by failing to support extant decision-making capacity and by contributing to underrepresentation in research. PURPOSE: The study objective was to identify key components related to including cognitively vulnerable participants who lack a study partner in social research. RESEARCH DESIGN/STUDY SAMPLE: We conducted an adaptive qualitative evidence synthesis (QES) and subsequent content analysis on 49 articles addressing capacity and research consent for potentially cognitively compromised individuals, to include people living with ADRD, who lack a study partner. RESULTS: We identified four major topic areas: defining competency, capacity, and consent; aspects of informed consent; strategies to assess comprehension of risks associated with social research; and risks versus benefits. CONCLUSIONS: Based on findings, we suggest new and ethically appropriate ways to determine capacity to consent to social research, make consent processes accessible to a population experiencing cognitive challenges, and consider the risks of excluding a growing population from research that could benefit millions.


Assuntos
Doença de Alzheimer , Demência , Tomada de Decisões , Humanos , Consentimento Livre e Esclarecido , Procurador
5.
Gerontologist ; 62(8): 1097-1103, 2022 Sep 07.
Artigo em Inglês | MEDLINE | ID: mdl-34951632

RESUMO

The interdisciplinary field of bioethics focuses on what it means to be a person, flourish as a person, and be respected as a person in different conditions of health, illness, or disability. Bioethics and policy research considers normative questions such as how a good society, through its priorities and investments, should demonstrate its commitments to the lives of different populations. Bioethics and humanities scholarship, often known as "health humanities," shares affinities with age studies and disability studies and with narrative-based approaches to the study of human experience. Gerontology is concerned with the many aspects of life that affect how people age, including social structures and values that influence the experience of growing old. In this article, we briefly explore the evolution of bioethics, from a discourse that emerged in relation to developments in biomedicine, bioscience, and biotechnology; to research ethics; to broader ethical questions emerging from real-world conditions, with attention to how bioethics has considered the experience of aging. Until recently, most age-focused work in bioethics has concerned age-associated illness, particularly end-of-life decision making. Given the reality of population aging and the ethical concerns accompanying the shift in age for most places in the world, the further evolution of bioethics involves greater attention to the support of flourishing in late life and to social justice and health equity in aging societies. We argue that the discourses of bioethics and critical gerontology, in dialogue, can bring a new understanding of privilege and preference, disparity and disadvantage, and reflection and respect for aging individuals.


Assuntos
Bioética , Geriatria , Equidade em Saúde , Ciências Humanas , Humanos , Justiça Social
6.
J Palliat Med ; 24(8): 1167-1173, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-33351728

RESUMO

Objectives: To characterize clinician experiences of hospice access and scope of services for undocumented immigrants. Background: The 10.5 million undocumented immigrants in the United States are not covered by Medicare's hospice benefit and are at high risk for being uninsured. Limited data are available regarding hospice services for this population. Setting/Subjects: Two hundred ninety-four interdisciplinary palliative care clinicians from across the United States. Measurements: Participants completed a web-based survey regarding hospice access and scope of services for undocumented immigrants in their location. We used simple frequencies to report clinician responses and chi-square analysis to evaluate associations between response and location. We performed rapid qualitative analysis of free-text responses to identify common limitations in scope of services. Results: A majority of clinicians (68%) perceived that access to hospice was limited or unavailable for undocumented immigrants in their location, and among respondents who provided data regarding hospice scope, 38% reported that services provided to undocumented immigrants were limited compared to those provided to other patients. Reports of restricted access and scope varied by region, and those in large metropolitan areas were more likely to report restricted scope of care than those in smaller towns (43% vs. 28%; p = 0.03). In our qualitative analysis of free-text responses, common limitations in hospice scope included reduced access to medications and equipment, inability to access inpatient hospice, inadequate translation services, reduced staffing, and restricted duration of services. Conclusions: Undocumented immigrants may face barriers in accessing comprehensive hospice services. Public policy changes that improve access to hospice may improve end-of-life care for undocumented immigrants.


Assuntos
Emigrantes e Imigrantes , Hospitais para Doentes Terminais , Imigrantes Indocumentados , Idoso , Acesso aos Serviços de Saúde , Humanos , Medicare , Inquéritos e Questionários , Estados Unidos
7.
Hastings Cent Rep ; 50(3): 56-58, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-32596904

RESUMO

The crisis of Covid-19 has forced us to notice two things: our human interdependence and American society's tolerance for what Nancy Krieger has called "inequalities embodied in health inequities," reflected in data on Covid-19 mortality and geographies. Care is integral to our recovery from this catastrophe and to the development of sustainable public health policies and practices that promote societal resilience and reduce the vulnerabilities of our citizens. Drawing on the insights of Joan Tronto and Eva Feder Kittay, we argue that the ethics of care offers a critical alternative to utilitarian and deontological approaches and provides a street-ready framework for integration into public health deliberations to anchor public policy and investments concerning the recovery and future well-being of America's citizens and society.


Assuntos
Temas Bioéticos , Infecções por Coronavirus/epidemiologia , Atenção à Saúde/ética , Pessoal de Saúde/ética , Pneumonia Viral/epidemiologia , Betacoronavirus , COVID-19 , Humanos , Pandemias , SARS-CoV-2 , Estados Unidos/epidemiologia
9.
Hastings Cent Rep ; 49(3)2019 05.
Artigo em Inglês | MEDLINE | ID: mdl-31269260

RESUMO

"Choices" about nonmedical aging-related matters, such as housing, are weirdly extreme in the long last stage of life in America. In my experiences accompanying my parents to consultations with physicians, elder-care lawyers, and social service providers, a middle-class older adult's presumed choices are the high-end assisted living facility-or the Medicaid spend-down. Nothing in between. Experts in aging and housing are calling attention to this "forgotten middle"-the millions of older Americans like my mother, people who are neither rich nor poor and whose needs in this long last stage of life cannot reliably be met through publicly funded health insurance or personal savings.


Assuntos
Comportamento de Escolha , Pacientes/psicologia , Bioética , Tomada de Decisões , Habitação , Humanos
10.
AMA J Ethics ; 21(1): E50-57, 2019 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-30672419

RESUMO

How to provide good care to uninsured undocumented immigrants who are broadly excluded from federally funded health benefits in the United States can raise ethical challenges for clinicians. The chilling effect of current immigration enforcement policies on health care access affects other immigrant populations and US citizens in mixed-status families. In the current political environment, students in health professions, house staff and other early career professionals, and teachers and mentors in health care settings that serve low-income immigrant populations need a shared understanding of how to provide good care under changing and challenging conditions. This article suggests key resources for clinical teaching and learning and for self-directed learning and reflection, with special attention to the "public charge" rule and its effects on immigrant health.


Assuntos
Educação Médica , Imigrantes Indocumentados , Educação Médica/métodos , Acesso aos Serviços de Saúde/ética , Humanos , Aplicação da Lei , Provedores de Redes de Segurança , Estados Unidos
11.
AMA J Ethics ; 21(1): E100-105, 2019 01 01.
Artigo em Inglês | MEDLINE | ID: mdl-30672426

RESUMO

Physicians and other health care professionals who work in hospitals and clinics serving low-income populations will encounter undocumented immigrants as patients, family members, community members, and persons whose health-related rights can be overlooked, imperiled, or difficult to use. The routine uncertainty arising in how to provide good care to patients who are excluded from key public insurance provisions, together with the desire to be a good advocate for this patient population, can give rise to so-called workarounds as problem-solving strategies. This article explores the ethics of workarounds in the care of undocumented patients and considers how advocacy by health care professionals and organizations can assist immigrants in communities they serve.


Assuntos
Atenção à Saúde/ética , Emigrantes e Imigrantes , Ética Médica , Imigrantes Indocumentados , Emigrantes e Imigrantes/legislação & jurisprudência , Política de Saúde , Humanos , Médicos/ética , Qualidade da Assistência à Saúde/ética , Justiça Social/ética , Imigrantes Indocumentados/legislação & jurisprudência , Estados Unidos
12.
Hastings Cent Rep ; 48 Suppl 4: S2-S5, 2018 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-30584863

RESUMO

This special report is published in commemoration of the fiftieth anniversary of the "Report of the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death," a landmark document that proposed a new way to define death, with implications that advanced the field of organ transplantation. This remarkable success notwithstanding, the concept has raised lasting questions about what it means to be dead. Is death defined in terms of the biological failure of the organism to maintain integrated functioning? Can death be declared on the basis of severe neurological injury even when biological functions remain intact? Is death essentially a social construct that can be defined in different ways, based on human judgment? These issues, and more, are discussed and debated in this report by leading experts in the field, many of whom have been engaged with this topic for decades.


Assuntos
Temas Bioéticos , Morte Encefálica/diagnóstico , Morte , Transplante de Órgãos , Atitude Frente a Morte , Consenso , Ética Médica , Humanos , Transplante de Órgãos/ética , Transplante de Órgãos/métodos , Transplante de Órgãos/psicologia , Transplante de Órgãos/tendências , Percepção Social
13.
Hastings Cent Rep ; 48 Suppl 3: S2-S9, 2018 09.
Artigo em Inglês | MEDLINE | ID: mdl-30311227

RESUMO

The ethical dimensions of an aging society are larger than the experience of chronic illness, the moral concerns of health care professionals, or the allocation of health care resources. What, then, is the role of bioethics in an aging society, beyond calling attention to these problems? Once we've agreed that aging is morally important and that population-level aging across wealthy nations raises ethical concerns that cannot be fixed through transhumanism or other appeals to transcend aging and mortality through technology, what is our field's contribution? We argue that it is time for bioethics to turn toward social justice and problems of injustice and that part of doing so is articulating a concept of good citizenship in an aging society that goes beyond health care relationships.


Assuntos
Envelhecimento , Bioética , Justiça Social , Demência , Direitos Humanos , Humanos
14.
Hastings Cent Rep ; 48(3): 40, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-29806899

RESUMO

People who lack decision-making capacity may be able to communicate preferences, which can and should inform surrogate decision-making on their behalf. It is unclear whether making a further distinction about "capacity for preferences," as Jason Wasserman and Mark Navin propose in this issue of the Hastings Center Report , would improve the process of surrogate decision-making. Anyone who is regularly involved in surrogate decision-making or who has worked to articulate decision-making standards and processes can think of cases in which a patient's voice was ignored or his or her preferences and ability to communicate them overlooked. However, we can also think of cases in which it was unclear whether information provided by a patient, recently or in the past, should have been characterized as a preference relevant to a medical decision that the patient lacked the capacity to make. We should also recognize that clear preferences of a patient who lacks decision-making capacity may conflict with the limits of another person or of a family's resources such that these preferences cannot guide a surrogate's decision. This patient will not get what he wants. A situation in which preferences are known and make sense but cannot be applied in a feasible way demonstrates the limits of the medical decision-making framework concerning care that is not covered by medical insurance.


Assuntos
Tomada de Decisão Clínica , Tomada de Decisões , Atenção à Saúde , Feminino , Humanos , Masculino
15.
J Aging Soc Policy ; 30(3-4): 300-315, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29634422

RESUMO

Health and social welfare policy proposals put forth by the Trump administration and Republican-controlled Congress could have huge impacts on low-income groups. This paper focuses on older Hispanics, with an emphasis on the Mexican-origin population who form the largest Hispanic subgroup. A demographic portrait is presented that indicates that Mexican-origin individuals have less wealth and lower incomes than do non-Hispanic Whites. Given rising health care costs, lower use of nursing homes, and greater propensity to live with grown children, prevailing economic disadvantage has serious consequences for this population. More restrictive immigration policies aimed at limiting family reunification could have intergenerational caregiving consequences. In addition, because of labor-force disadvantages, low-income Mexican-origin adults are less likely to have private insurance compared to non-Hispanic Whites as they approach retirement. Consequently, Mexican-origin older adults tend to rely on Medicaid when eligible; in contrast, late-life migrants-who do not qualify for federally funded benefits for at least five years-and unauthorized migrants-who are excluded from federally funded benefits-have extremely limited access to safety net provisions. The potential effects of proposed cutbacks in health care financing on older Hispanics are discussed.


Assuntos
Disparidades em Assistência à Saúde , Política , Seguridade Social , Demografia , Emigração e Imigração , Humanos , Medicaid , México/etnologia , Pobreza , Estados Unidos
16.
Am J Nurs ; 117(10): 53-55, 2017 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-28957930

RESUMO

: Nurses regularly circumvent work systems they perceive to be flawed to provide more efficient or better care. If kept secret, however, such workarounds become ethically questionable, even when the nurse is trying to do the right thing. In this article, the author discusses how nurses can be creative problem solvers without resorting to practices that may be ethical in intent yet potentially harmful in their consequences.


Assuntos
Erros Médicos/ética , Recursos Humanos de Enfermagem no Hospital/ética , Tolerância ao Trabalho Programado/psicologia , Simplificação do Trabalho , Carga de Trabalho/psicologia , Esgotamento Profissional/prevenção & controle , Ética em Enfermagem , Humanos , Erros Médicos/prevenção & controle , Enfermeiras e Enfermeiros/psicologia , Segurança do Paciente , Estados Unidos
17.
AMA J Ethics ; 19(6): 608-616, 2017 Jun 01.
Artigo em Inglês | MEDLINE | ID: mdl-28644791

RESUMO

Culture is learned behavior shared among members of a group and from generation to generation within that group. In health care work, references to "culture" may also function as code for ethical uncertainty or moral distress concerning patients, families, or populations. This paper analyzes how culture can be a factor in patient-care situations that produce moral distress. It discusses three common, problematic situations in which assumptions about culture may mask more complex problems concerning family dynamics, structural barriers to health care access, or implicit bias. We offer sets of practical recommendations to encourage learning, critical thinking, and professional reflection among students, clinicians, and clinical educators.


Assuntos
Cultura , Princípios Morais , Estresse Psicológico/etnologia , Incerteza , Humanos , Estresse Psicológico/psicologia
20.
JAMA Intern Med ; 177(4): 529-535, 2017 04 01.
Artigo em Inglês | MEDLINE | ID: mdl-28166331

RESUMO

Importance: The exclusion of undocumented immigrants from Medicare coverage for hemodialysis based on a diagnosis of end-stage renal disease (ESRD) requires physicians in some states to manage chronic illness in this population using emergent-only hemodialysis. Emergent-only dialysis is expensive and burdensome for patients. Objective: To understand the illness experience of undocumented immigrants with ESRD who lack access to scheduled hemodialysis. Design, Setting, and Participants: A qualitative, semistructured, interview study was conducted in a Colorado safety-net hospital from July 1 to December 31, 2015, with 20 undocumented immigrants (hereinafter referred to as undocumented patients) with ESRD and no access to scheduled hemodialysis. Demographic information was collected from the participants' medical records. The interviews were audiorecorded, translated, and then transcribed verbatim. The interviews were analyzed using inductive qualitative theme analysis by 4 research team members from March 1 to June 30, 2016. Main Outcomes and Measures: Themes and subthemes from semistructured interviews. Results: All 20 undocumented patients included in the study (10 men and 10 women; mean [SD] age, 51.4 [13.8] years) had been in the United States for at least 5 years preceding their diagnosis with ESRD. They described the following 4 main themes: (1) a distressing symptom burden and unpredictable access to emergent-only hemodialysis, (2) death anxiety associated with weekly episodes of life-threatening illness, (3) family and social consequences of accommodating emergent-only hemodialysis, and (4) perceptions of the health care system. Conclusions and Relevance: Undocumented patients with ESRD experience debilitating, potentially life-threatening physical symptoms and psychosocial distress resulting from emergent-only hemodialysis. States excluding undocumented immigrants with ESRD from scheduled dialysis should reconsider their policies.


Assuntos
Efeitos Psicossociais da Doença , Serviços Médicos de Emergência , Falência Renal Crônica , Diálise Renal , Adulto , Demografia , Serviços Médicos de Emergência/métodos , Serviços Médicos de Emergência/estatística & dados numéricos , Feminino , Acesso aos Serviços de Saúde/normas , Humanos , Falência Renal Crônica/economia , Falência Renal Crônica/epidemiologia , Falência Renal Crônica/psicologia , Falência Renal Crônica/terapia , Masculino , Pessoa de Meia-Idade , Determinação de Necessidades de Cuidados de Saúde , Psicologia , Pesquisa Qualitativa , Diálise Renal/métodos , Diálise Renal/estatística & dados numéricos , Imigrantes Indocumentados/psicologia , Imigrantes Indocumentados/estatística & dados numéricos , Estados Unidos/epidemiologia
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