Background: Very few studies have investigated the racial differences in do-not-resuscitate (DNR) orders in children, and these studies are limited to oncological cases. We aim to characterize the racial difference in DNR orders among U.S. pediatric surgical patients.
Methods: We retrospectively evaluated the mortality of all children who underwent an inpatient surgery between 2012 and 2017 from the National Surgical Quality Improvement Program. We used log-binomial models to estimate the relative risk (RR) and 95% confidence interval (CI) of DNR use comparing white with African American (AA) children. To estimate the risk-adjusted difference in DNR orders, we controlled the analyses for age, prematurity status, emergent case status, American Society of Anesthesiologists class, year of operation, surgical specialty, and surgical complexity.
Results: Between 2012 and 2017, a total of 276,917 children underwent inpatient surgery, of whom 0.8% (n = 1601) died within 30 days of operation. Of the 1601 mortality cases, we retained 1212 children who were of either AA (26.0%, n = 350) or white (63.9%, n = 862) race. Most children were neonates, had an American Society of Anesthesiologists class =4 (70.0%, n = 811), and developed one or more postoperative complications (68.7%, n = 833). Overall, AA children were more likely to be neonates at the time of surgery (42.0% vs. 40.3%, p < 0.001), to be premature (66.3% vs. 49.0%, p < 0.001), and develop one or more postoperative complications (73.7% vs. 66.7%, p = 0.017). White children were three times more likely to have a DNR order than their AA peers (adjusted RR: 3.01, 95% CI: 1.09–8.56, p = 0.044).
Conclusion: Among pediatric surgical patients in the United States, children of white race were three times more likely to have a DNR order in place than their AA peers despite the latter being “sicker” and more likely to develop postoperative complications. The mechanisms underlying this racial difference deserve further elucidation to improve shared decision making and goal-concordant care.
Le mot "éthique", lorsqu’il est appliqué aux sciences et à la médecine du vivant, semble recouvrir indifféremment l’"éthique médicale" proprement dite, c’est-à-dire l’exigence d’un certain comportement de la médecine au service du malade, et la bioéthique, qui est la mise en forme, à partir d’une recherche pluridisciplinaire, d’un questionnement sur les conflits de valeurs suscités par le développement techno-scientifique dans le domaine du vivant. Ces deux termes ont, du reste, des champs d’application voisins ou croisés lorsqu’il s’agit du don d’organe ou de l’assistance à la procréation.
Didier Sicard clarifie les enjeux respectifs et communs de l’éthique médicale et de la bioéthique. Il met ainsi en perspective les notions de consentement, de préservation du secret ou encore de non-discrimination, essentielles à cette éthique appliquée.
Si un patient peut refuser un soin, il arrive que des professionnels de santé refusent de soigner une personne, acte considéré souvent comme discriminatoire. Des enquêtes ont été menées pour mettre en lumière ce phénomène. Cette notion convoque un point de vue philosophique et éthique.
BACKGROUND: There is increasing recognition of the importance of early incorporation of palliative care services in the care of patients with advanced cancers. Hospice-based palliative care remains underutilized for black patients with cancer, and there is limited literature on racial disparities in use of non-hospice-based palliative care services for patients with cancer.
OBJECTIVE: The primary objective of this study is to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States.
DESIGN: This retrospective cohort study analyzed 204 175 hospital admissions of patients with advanced cancers between 2012 and 2014. The cohort was identified through the National Inpatient Dataset. International Classification of Disease, Ninth Revision codes were used to identify receipt of a palliative care consultation.
RESULTS: Of this, 57.7% of those who died received IPCC compared to 10.5% who were discharged alive. In multivariable logistic regression models, black patients discharged from the hospital, were significantly less likely to receive a palliative care consult compared to white patients (odds ratio [OR] black: 0.69, 95% CI: 0.62-0.76).
CONCLUSIONS: Death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There are significant racial disparities in the utilization of IPCC for patients with advanced cancer.
Today's coronavirus pandemic is novel, but the ethical dilemmas it presents are not. In the modern era, physicians have helped patients face the influenza pandemics of 1918, the 1950s, the 1960s, and 2009; HIV/AIDS (1980s and beyond); severe acute respiratory syndrome (2002); and Middle East respiratory syndrome (2015). Physicians cannot do it alone: Institutions must support their efforts (and have a responsibility to provide protection from occupational exposures). Longstanding principles of medical ethics should guide the profession, individual clinicians, health systems, and our society. They must be reaffirmed in the circumstances of health system catastrophes, during which their application—but not the principles themselves—may change. These principles include justice; equity; and, fundamentally, the physician's duty to care for all and not discriminate against a class or category of patients (for example, on the basis of age, race, ethnicity, disability, sex, gender identity, social status, or other personal characteristics).
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With services overburdened, healthcare professionals are having to decide who should receive treatment. Dave Archard says this is no excuse for wandering blindly into discrimination, but Arthur Caplan argues age is a valid criterion when supported by data.
This paper follows on from a brief debate about the role of conscientious objection in healthcare, where the issue arose as to whether conscientious objection is (or can) be a tool of resistance against systemic injustice. The paper contributes to this debate by highlighting that some authors generally opposed to conscientious objection in healthcare have shown some support to this idea. Perhaps if there is one area in which all can agree, it is that in healthcare conscientious objection should be allowed so as to prevent cases of systemic injustice.
Objectives: To investigate racial differences in implementation of 11 evidence-based cancer pain management strategies in a matched sample of patients in hospice.
Sample & Setting: 32 African American and 32 Caucasian American older adults (aged 65 years or older) with cancer pain receiving hospice care in the midwestern United States.
Methods & Variables: Matched cohort secondary data analysis of postintervention data in a cluster randomized controlled trial was used. Main outcomes are the summative and individual Cancer Pain Practice Index scores.
Results: There were few statistically significant or clinically meaningful differences in implementation of individual best practices for pain management by race. Assessment of primary pain characteristics and management of opioid-induced constipation with a bowel regimen was significantly lower in African Americans than in Caucasian Americans.
Implications for Nursing: African American older adults receiving hospice care at the end of life received pain management that was, overall, comparable to matched Caucasian American older adults. Hospice and oncology nurses play a critical role in effective pain management and should continue to implement evidence-based guidelines for pain management into daily practice. Diffusing the hospice model and principles of pain and symptom management into other settings and specialty care areas may reduce widespread pain disparities.
Gender inequality in the form of gender-based violence manifests throughout the course of women's lives but has a particularly unique impact at end of life. We sampled 26 patients and 14 caregivers for this qualitative critical ethnographic study. The study purpose was to describe the lived experience of female palliative care patients in rural Malawi and their caregivers. The specific aims were to (i) analyse physical, spiritual and mental health needs and (ii) guide best healthcare practice. The study was informed by feminist epistemology, which drew us to an analysis focused on how gender inequality and gender-based violence affect the care of those with terminal illness. In this article, based on our findings, we demonstrate how gender inequality manifests through the intersecting gendered vulnerabilities of patients and their caregivers in rural Malawi. The findings specifically provide insight into the gendered nature of care work and how the gendered life trajectories of both patients and caregivers intersect to impact the health and well-being of both groups. Our findings have implications on how palliative care can be scaled up in rural Malawi in support of women who are experiencing intimate partner violence at end of life, and the caregivers responsible for their well-being.
Background: Lesbian, gay, bisexual, and transgender (LGBT) patients fear being open about their identities, not receiving equal or safe treatment, and having their family and surrogates disrespected or ignored by providers.
Objective: To examine inadequate, disrespectful, and abusive care to patients and family due to sexual orientation or gender identity.
Design: A cross-sectional study using an online survey.
Setting/Subjects: Home and residential hospice, inpatient palliative care service, and other inpatient and outpatient settings. Subjects were 865 hospice and palliative care providers, including physicians, social workers, nurses, and chaplains.
Measurements: Inadequate, disrespectful, or abusive care to LGBT patients and discriminatory treatment of family and surrogates were measured.
Results: Among respondents, 53.6% thought that lesbian, gay, or bisexual (LGB) patients were more likely than non-LGB patients to experience discrimination at their institution; 23.7% observed discriminatory care; 64.3% reported that transgender patients were more likely than nontransgender patients to experience discrimination; 21.3% observed discrimination to transgender patients; 15% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 14.3% observed the spouse/partner or surrogate being treated disrespectfully.
Conclusions: These findings provide strong evidence that LGBT patients and their families are more likely to receive discriminatory care as compared with those who are not LGBT. Disrespectful care can negatively impact the trust patients have in providers and institutions, and lead to delaying or avoiding care, or not disclosing relevant information. Partners/spouses and surrogates may be treated disrespectfully, have their treatment decisions ignored or minimized, be denied or have limited access to the patient, and be denied private time. Advocacy and staff training should address barriers to delivering respectful and nondiscriminatory care.
BACKGROUND: Ensuring palliative care for all under a new global health policy must include key populations, that is, lesbian, gay, bisexual, transgender and intersex (LGBTI) people, and sex workers. Accessibility and quality of care have not been investigated in lower and middle-income countries where civil rights are the weakest.
AIM: To examine the accessibility to, and experiences of, palliative care for key populations in Zimbabwe.
DESIGN: Qualitative study using thematic analysis of in-depth interviews and focus groups.
SETTING/PARTICIPANTS: A total of 60 key population adults and 12 healthcare providers and representatives of palliative care and key population support organisations were interviewed in four sites (Harare, Bulawayo, Mutare and Masvingo/Beitbridge).
RESULTS: Participants described unmet needs and barriers to accessing even basic elements of palliative care. Discrimination by healthcare providers was common, exacerbated by the politico-legal-economic environment. Two dominant themes emerged: (a) minimal understanding of, and negligible access to, palliative care significantly increased the risk of painful, undignified deaths and (b) discriminatory beliefs and practices from healthcare providers, family members and the community negatively affected those living with life-limiting illness, and their wishes at the end of life. Enacted stigma from healthcare providers was a potent obstacle to quality care.
CONCLUSION: Discrimination from healthcare providers and lack of referrals to palliative care services increase the risk of morbidity, mortality and transmission of infectious diseases. Untreated conditions, exclusion from services, and minimal family and social support create unnecessary suffering. Public health programmes addressing other sexually taboo subjects may provide guidance.
Despite education and professional preparation, age and diagnosis discrimination persists in health care. A case scenario describes discrimination that could have resulted in untimely death without advocacy and intervention by 1 informed professional. Nurses must identify their own attitudes and behaviors associated with age, diagnosis, and their role within the interprofessional team to identify when discrimination may be occurring and claim their responsibility as advocate to ethically intervene on behalf of patients and families when appropriate.
BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness.
AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples.
DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis.
SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer (n = 21), non-cancer (n = 16) and both a cancer and a non-cancer conditions (n = 3).
RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness.
CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.
INTRODUCTION: Racial disparities in medical treatment for seriously injured patients across the spectrum of care are well established, but racial disparities in end of life decision-making practices have not been well described. When time from admission to time to withdrawal of life-sustaining treatment (WLST) increases, so does the potential for ineffective care, healthcare resource loss, and patient and family suffering. We sought to determine the existence and extent of racial disparities in late WLST after severe injury.
METHODS: We queried the American College of Surgeons' (ACS) Trauma Quality Improvement Program (TQIP) (2013 - 2016) for all severely injured patients (injury severity score > 15, age > 16) with a WLST order > 24 hours after admission. We defined late WLST as care withdrawn at a time interval beyond the 75th percentile for the entire cohort. Univariate and multivariate analyses were performed utilizing descriptive statistics, and t-tests and chi-squared tests where appropriate. Multivariable regression analysis was performed with random effects to account for institutional-level clustering using late WLST as the primary outcome, and race as the primary predictor of interest.
RESULTS: 13,054 patients from 393 centers were included in the analysis. Median time to WLST was 5.4 days (IQR 2.6-10.3). In our unadjusted analysis, African-American patients (10.1% vs 7.1%, p<0.001) and Hispanic patients (7.8% vs 6.8%, p<0.001) were more likely to have late WLST as compared to early WLST. After adjustment for patient, injury, and institutional characteristics, African-American (OR 1.42, 95% CI 1.21-1.67) and Hispanic (1.23, 1.04-1.46) race were significant predictors of late WLST.
CONCLUSION: African-American and Hispanic race are both significant predictors of late WLST. These findings might be due to patient preference or medical decision making, but speak to the value in assuring a high standard related to identifying goals of care in a culturally sensitive manner.
LEVEL OF EVIDENCE: Prognostic and epidemiologic study, level III.
Diagnosis of cancer leads to multiple losses, all with the potential to initiate grief reactions in patients. The present study aims to contribute to the understanding of the experience of grief by patients with cancer in relation to perceptions of illness, with a focus on the mediating roles of identity centrality, stigma-induced discrimination, and hopefulness. The analyses indicated that these factors functioned as significant partial mediators. The results have implications in terms of supporting patients through the grieving process by working on the meaning of the illness for their identity and improving psychosocial environments to minimize discrimination and facilitate hope.
Ce livre a été réalisé à partir d'un séminaire qui a réuni au cours de l'année 2005-2006 cinquante universitaires. Ces derniers ont été invités à présenter leurs travaux autour du thème de la solidarité et des politiques de réduction des inégalités. Les textes sont répartis selon huit thématiques : - Solidarité et justice sociale - Que peut-on attendre des solidarités familiales ? - Renouer le lien entre les générations - Sortir de la crise de la société salariale - Combattre le racisme et les discriminations - Lutter contre les ségrégations urbaines et scolaires - Répondre à la souffrance : le proche et le lointain - Quel modèle d'Etat-providence ?
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Les personnes âgées : qui sont-elles ? À quoi aspirent-elles ? Un grand nombre de préjugés les mettent un peu à l’écart de notre société : selon certains, "les vieux" seraient déprimants, aigris, inintéressants... Autant de clichés que ce film entend démentir, en levant le voile sur la réalité de trois aînés, filmés par leur infirmier, au sein d’une résidence genevoise. Dialoguant avec leur infirmier, les protagonistes oublient peu à peu la caméra pour laisser libre cours à leurs paroles. Ils s’expriment successivement sur leurs personnalités et analysent l’image qu’ils pensent véhiculer à l’extérieur. Ils donnent leur point de vue sur les autres pensionnaires et sur le fonctionnement de leur résidence. Ils décrivent leur manière de vivre la vieillesse et d’appréhender la mort.
Aux Etats-Unis, les membres de la communauté hispanique atteints de maladie limitant leur espérance de vie sont particulièrement vulnérables du fait des obstacles qu'ils rencontrent pour l'accès à des soins appropriés et des expériences de discrimination qu'ils peuvent avoir subies. Les infirmières ont un rôle-clé à jouer dans la planification des soins pour les patients hispaniques, en fournissant des informations pertinentes et en initiant des discussions autour de la fin de vie. Les auteures de l'étude ont utilisé le modèle Campinha-Bacote pour appréhender le contexte culturel particulier des hispaniques.
Cette étude vise à déterminer l'influence que la discrimination, la confiance, la communication et d'autres caractéristiques de santé ont sur la satisfaction du traitement de la douleur parmi les adultes âgés recevant des services de jour provenant d'un centre de lutte contre le cancer.
Comment dépasser les pertes, les renoncements et les deuils qui rendent plus vulnérables ? Comment continuer de grandir au-delà de l'âge ? Les auteurs proposent de regarder autrement la question du vieillissement, en considérant notamment la personne âgée dans sa trajectoire de vie : après 70 ans, elle a tous les âges à la fois, mais ne perd pas pour autant son statut d'adulte. Loin de la formule marketing du "vieillir jeune", ils ouvrent des pistes pour vieillir vieux et fiers de l'être, pour avancer en âge dans une mobilité narcissique qui permette de poursuivre une évolution spirituelle, bref pour vieillir en "accord-d'âge".
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