Evaluating Decision-Making Capacity: When a False Belief about Ventilators Is the Reason for Refusal of Life-Sustaining Treatment.

In this article, we discuss the case of Michael Johnson, an African-American man who sought treatment for respiratory distress due to COVID-19, but who was adamant that he did not want to be intubated due to his belief that ventilators directly cause death. This case prompted reflection about the ways in which a false belief can create uncertainty and complexity for clinicians who are responsible for evaluating decision-making capacity (DMC). In our analysis, we consider the extent to which Mr. Johnson demonstrated capacity according to each of Appelbaum's criteria.1 Although it was fairly clear that Mr. Johnson lacked DMC on the basis of both understanding and appreciation, we found ourselves reflecting upon the false belief that seemed to motivate his refusal. This led us to further consider the ways in which our current social and political environment can complicate evaluations of patients' preferences and reasons for declining life-sustaining interventions. In particular, we consider the impact of the role of misinformation and systemic racism in preparing the grounds for false beliefs.In this article, we discuss the case of Michael Johnson, an African-American man who sought treatment for respiratory distress due to COVID-19, but who was adamant that he did not want to be intubated due to his belief that ventilators directly cause death. This case prompted reflection about the ways in which a false belief can create uncertainty and complexity for clinicians who are responsible for evaluating decision-making capacity (DMC). In our analysis, we consider the extent to which Mr. Johnson demonstrated capacity according to each of Appelbaum's criteria.1 Although it was fairly clear that Mr. Johnson lacked DMC on the basis of both understanding and appreciation, we found ourselves reflecting upon the false belief that seemed to motivate his refusal. This led us to further consider the ways in which our current social and political environment can complicate evaluations of patients' preferences and reasons for declining life-sustaining interventions. In particular, we consider the impact of the role of misinformation and systemic racism in preparing the grounds for false beliefs.

A Retrospective Investigation of Neuraxial Anesthesia Rates for Elective Cesarean Delivery Before and During the SARS-CoV-2 Pandemic.

BACKGROUND: Our hospital used to perform cesarean delivery under general anesthesia rather than neuraxial anesthesia, mostly because of patient refusal of members of the conservative Bedouin society. According to recommendations implemented by the Israeli Obstetric Anesthesia Society, which were implemented due to the severe acute respiratory syndrome coronavirus-2 (SARS-CoV-2) pandemic, we increased the rate of neuraxial anesthesia among deliveries. OBJECTIVES: To compare the rates of neuraxial anesthesia in our cesarean population before and during SARS-CoV-2 pandemic. METHODS: We included consecutive women undergoing an elective cesarean delivery from two time periods: pre-SARS-CoV-2 pandemic (15 February 2019 to 14 April 2019) and during the SARS-CoV-2 pandemic (15 February 2020 to 15 April 2020). We collected demographic data, details about cesarean delivery, and anesthesia complications. RESULTS: We included 413 parturients undergoing consecutive elective cesarean delivery identified during the study periods: 205 before the SARS-CoV-2 pandemic and 208 during SARS-CoV-2 pandemic. We found a statistically significant difference in neuraxial anesthesia rates between the groups: before the pandemic (92/205, 44.8%) and during (165/208, 79.3%; P < 0.0001). CONCLUSIONS: We demonstrated that patient and provider education about neuraxial anesthesia can increase its utilization. The addition of a trained obstetric anesthesiologist to the team may have facilitated this transition.

Against settler colonial iatrogenesis: Inuit resistance to treatment in Indian Hospitals in Canada.

Canada's program to examine, transfer and treat Indigenous and Inuit peoples with tuberculosis in Indian Hospitals (ca. 1936 and 1969) has generally been framed by official narratives of population health, benevolence, and care. However, letters written by Inuit patients in Indian hospitals and their kin, and which were addressed to government officials and translated by government employees, challenge this assumption. By focusing on the harmful effects of the segregation and long-term detainment of Inuit peoples away from their communities, the letters theorize TB treatment as multiply harmful and iatrogenic. The letters also showcase how Inuit peoples resisted Indian Hospital treatment and articulated the need for care and treatment to occur within a network of intimate relations, rather than in distant sanatoriums.

Videos to reduce racial disparities in ICD therapy Via Innovative Designs (VIVID) trial: Rational, design and methodology.

BACKGROUND: Despite a higher prevalence of sudden cardiac death (SCD), black individuals are less likely than whites to have an implantable cardioverter defibrillator (ICD) implanted. Racial differences in ICD utilization is in part explained by higher refusal rates in black individuals. Decision support can assist with treatment-related uncertainty and prepare patients to make well-informed decisions. METHODS: The Videos to reduce racial disparities in ICD therapy Via Innovative Designs (VIVID) study will randomize 350 black individuals with a primary prevention indication for an ICD to a racially concordant/discordant video-based decision support tool or usual care. The composite primary outcome is (1) the decision for ICD placement in the combined video groups compared with usual care and (2) the decision for ICD placement in the racially concordant relative to discordant video group. Additional outcomes include knowledge of ICD therapy and SCD risk; decisional conflict; ICD receipt at 90 days; and a qualitative assessment of ICD decision making in acceptors, decliners, and those undecided. CONCLUSIONS: In addition to assessing the efficacy of decision support on ICD acceptance among black individuals, VIVID will provide insight into the role of racial concordance in medical decision making. Given the similarities in the root causes of racial/ethnic disparities in care across health disciplines, our approach and findings may be generalizable to decision making in other health care settings.

Race and Health Disparities in Patient Refusal of Surgery for Early-Stage Pancreatic Cancer: An NCDB Cohort Study.

AIM: To identify factors associated with refusal of surgery in patients with early-stage pancreatic cancer and estimate the impact of this decision on survival. METHODS: Using the National Cancer Data Base, 26,358 patients were identified with potentially resectable tumors (pretreatment clinical stage I: T1 or T2 N0M0). Multivariate models were employed to identify factors predicting failure to undergo surgery and assess the impact on survival. RESULTS: Of early-stage patients who were recommended surgery, 7.8% (N = 992) refused surgery for resectable early-stage pancreatic cancer. On multivariable analysis, patients were more likely to refuse surgery if they were older [odds ratio (OR) = 1.18; 95% confidence interval (CI) 1.16-1.19], female (OR = 1.52; 95% CI 1.33-1.73), African American (vs White, OR = 1.79; 95% CI 1.37-2.34), on Medicare/Medicaid (vs private, OR = 2.75; 95% CI 1.54-4.92) or had higher Charlson-Deyo score (2 vs 0, OR = 1.33; 95% CI 1.03-1.72). Patients were also significantly more likely to refuse surgery if they were seen at a center that is not an academic/research program (OR 1.9; 95% CI 1.6-2.27). Patients who were recommended surgery but refused had significantly worse survival than those with stage I who received surgery [median survival 6.8 vs 24 months, Cox hazard ratio (HR) 3.41; 95% CI 3.12-3.60]. CONCLUSIONS: The percentage of patients refusing surgery for operable early-stage pancreatic cancer has been decreasing in the last decade but remains a significant issue that affects survival. Disparities in refusal of surgery are independently associated with several variables including gender, race, and insurance. To mitigate national disparities in surgical care, future studies should focus on exploring potential reasons for refusal and developing communication interventions.

Race-based experiences of ethnic minority health professionals: Arab physicians and nurses in Israeli public healthcare organizations.

Increasing workforce diversity was found to contribute to the narrowing of disparities in health. However, racism toward ethnic minority health professionals has not been adequately researched. In Israel, public healthcare organizations that serve a mixed Jewish-Arab population employ Arab minority healthcare professionals. Instances of prejudice and manifestations of racism toward them, which frequently surface in public discussion and the media, have unfortunately gained little scholarly attention. We used the intergroup contact approach and the theory of the social process of everyday racism as a theoretical framework. The objective of the research was to study race-based experiences of Israeli Arab healthcare professionals. METHODOLOGY: We used a qualitative research method that allows respondents to describe their views, experiences, beliefs and behavior in the way they think about them. During 2013 and 2014 we conducted in-depth interviews with a snowball sample of 10 Arab physicians and 13 Arab nurses who work in Israeli public hospitals. The study protocol was ethically approved. FINDINGS: Interviewees noted institutional efforts to maintain egalitarianism and equality. However, at the micro-level, interviewees, mostly nurses, reported instances that ranged from refusal to accept treatment from an Arab nurse, through verbal abuse, to the use of physical violence against them. At the meso-level, interviewees, mostly physicians, reported experiences of institutional discrimination. At the macro-level, one physician reported policy-related discrimination in the context of the immigration of Russian Jewish physicians to Israel. CONCLUSIONS: We recommend combining the intergroup contact approach with the social process theory of racism to examine minorities' subjective perceptions, especially in conflictual and violent contexts; conducting broad-based quantitative research in Israeli healthcare organizations, which may have important implications for the specific strategies to be used; and emphasizing the importance of institutional support. By reconstructing race-based experiences of ethnic minority health professionals, health organizations can better manage racial situations and reduce their frequency.

The Secret Drama at the Patient's Bedside-Refusal of Treatment Because of the Practitioner's Ethnic Identity: The Medical Staff 's Point of View.

Patients' refusal of treatment based on the practitioner's ethnic identity reveals a clash of values: neutrality in medicine versus patient-centered care. Taking the Israeli-Palestinian conflict into account, this article aims at examining Israeli health care professionals' points of view concerning patients' refusal of treatment because of a practitioner's ethnic identity. Fifty in-depth interviews were conducted with 10 managers and 40 health care professionals, Jewish and Arab, employed at 11 public hospitals. Most refusal incidents recorded are unidirectional: Jewish patients refusing to be treated by Arab practitioners. Refusals are usually directed toward nurses and junior medical staff members, especially if recognizable as religious Muslims. Refusals are often initiated by the patients' relatives and occur more frequently during periods of escalation in the conflict. The structural competency approach can be applied to increase awareness of the role of social determinants in shaping patients' ethnic-based treatment refusals and to improve the handling of such incidents.

Central Nervous System Disease, Education, and Race Impact Radiation Refusal in Pediatric Cancer Patients.

To investigate the determinants of radiation therapy refusal in pediatric cancer, we used the Surveillance, Epidemiology, and End Results registry to identify 24,421 patients who met the eligibility criteria, diagnosed between 1974 and 2012. Patients had any stage of cancer, were aged 0 to 19, and received radiation therapy or refused radiation therapy when it was recommended. One hundred twenty-eight patients (0.52%) refused radiation therapy when it was recommended. Thirty-two percent of patients who refused radiation therapy ultimately died from their cancer, at a median of 7 months after diagnosis (95% confidence interval, 3-11 mo), as compared with 29.0% of patients who did not refuse radiation therapy died from their cancer, at a median of 17 months after diagnosis (95% confidence interval, 17-18 mo). On multivariable analysis, central nervous system (CNS) site, education, and race were associated with radiation refusal. The odds ratio for radiation refusal for patients with CNS disease was 1.62 (P=0.009) as compared with patients without CNS disease. For patients living in a county with ≥10% residents having less than ninth grade education, the odds ratio for radiation refusal was 1.71 (P=0.008) as compared with patients living in a county with <10% residents having less than ninth grade education. Asian, Pacific Islander, Alaska Native, and American Indian races had an odds ratio of 2.12 (P=0.002) for radiation refusal as compared with black or white race. Although the radiation refusal rate in the pediatric cancer population is low, we show that CNS site, education level, and race are associated with a significant difference in radiation refusal.

Addressing MMR Vaccine Resistance in Minnesota's Somali Community.

Over the past 10 years, Minnesota clinicians have noticed increased resistance to MMR vaccination among Somali Minnesotans. Misinformation about a discredited study asserting a link between the MMR vaccine and autism has permeated this community as parents have increasingly become concerned about the prevalence of autism spectrum disorder among their children. As a result, MMR vaccination rates among U.S.-born children of Somali descent are declining. This article reports findings from an investigation by the Minnesota Department of Health, which was undertaken to better understand vaccine hesitancy among Somali Minnesotans. Based on these and other findings, we propose a multi-pronged approach for increasing vaccination rates in this population.

County characteristics associated with refusing breast cancer surgery: Evidence from the Surveillance, Epidemiology, and End Results program.

BACKGROUND: Individuals' communities impact cancer disparities and are intimately related to social determinants of health. Studies show that personal factors affect treatment refusals for a potentially curable cancer, but few studies have investigated whether community-based characteristics affect the receipt of surgery. METHODS: We used Surveillance Epidemiology and End Results Program registries from 2010 to 2015 to examine differences in rates of surgery refusal among non-Hispanic White, non-Hispanic Black, and Hispanic women diagnosed with nonmetastatic breast cancer. The community factor measures were based on county-level factors. Sociodemographic and community differences were analyzed using Pearson's χ2 tests and analysis of variance. Multivariate logistic regression of predictors of surgery refusal and the Cox proportional hazard model of disease-specific mortality were performed. RESULTS: Surgery refusers among non-Hispanic Black and Hispanic all races lived in counties with lower rates of educational attainment, median family and household income, and higher rates of poverty, unemployment, foreign-born, language isolation, urban population, and women more than 40 years old having mammography in last 2 years. Multivariate analysis shows surgery refusal rates increased in counties having a high percentage of urban population and declined in counties with an increased percentage of less than high school level education, unemployment, and median household income. Breast cancer-specific mortality increased significantly with surgery refusal. CONCLUSION: Residence in counties with the lowest socioeconomic status and disproportionately populated by racial and ethnic minorities is associated with surgery refusal. Given the high mortality associated with refusing surgery, culturally sensitive education on the benefits of care may be appropriate.

Race and health disparities in patient refusal of surgery for early-stage non-small cell lung cancer: a SEER cohort study.

INTRODUCTION: Several factors, including race, age, stage, comorbid conditions, social support, and socioeconomic status, have been linked to the likelihood of a patient having surgery for early-stage non-small cell lung cancer (NSCLC). The aim of the present study is to determine the influence of race and health disparities on refusal of recommended potentially curative surgery. METHODS: The Surveillance, Epidemiology, and End Results (SEER) database was used to create a cohort of 62,514 patients diagnosed with stages I and II NSCLC between 1988 and 2002, of whom 51,938 were recommended for surgery. The outcome variable was refusal of recommended surgical treatment, while race was the key predictor variable. Potential confounders were adjusted for in the hierarchical generalized logistic regression analysis. RESULTS: A majority was White (86%) and underwent surgery (81%). About 2% of Blacks (n = 109), 1.4% of Whites (n = 756), and 2.8% of "other" race individuals (n = 96) refused surgery. In the multivariable adjusted model, Blacks [odds ratio (OR) 1.95, 95% confidence interval (CI) 1.5, 2.3, P < 0.001] and those of "other" race (OR 2.03, 95% CI 1.5, 2.5, P < 0.001) had greater odds of refusing surgery than did Whites. Increasing age, male gender (OR 1.17, P = 0.031), and being unmarried (OR 2.1, P < 0.001) were other factors associated with higher odds of refusal. Significant county variations were also noted in refusal of surgery. CONCLUSIONS: Blacks and "other" races are more likely to refuse recommended surgery for early-stage NSCLC compared with Whites. Future studies should focus on exploring potential reasons for refusal and developing communication interventions.

Barriers to therapeutic clinical trials enrollment: differences between African-American and white cancer patients identified at the time of eligibility assessment.

BACKGROUND: Clinical trials (CTs) are the mechanism by which research is translated into standards of care. Low recruitment among underserved and minority populations may result in inequity in access to the latest technology and treatments, compromise the generalizability, and lead to failure in identification of important positive or negative treatment effects among under-represented populations. METHODS: Data were collected over a 39-month period on patient eligibility for available therapeutic cancer CTs. Reasons for ineligibility and refusal were collected. The data were captured using an automated software tool for tracking eligibility pre-enrollment. We examined characteristics associated with being evaluated for a trial, and reasons for ineligibility and refusal, overall and by patient race. RESULTS: African-Americans (AAs) were more likely than Whites to be ineligible (odds ratio, (OR) = 1.26, 95% confidence interval (CI) = 1.0-1.58) and if eligible, to refuse participation (OR = 1.79, 95% CI = 1.27-2.52), even after adjusting for insurance, age, gender, study phase, and cancer type. White patients were more likely to be ineligible due to study-specific or cancer characteristics. AAs were more likely to be ineligible due to mental status or perceived noncompliance. Whites were more likely to refuse due to extra burden, due to concerns with randomization and toxicity, or because they express a positive treatment preference. AAs were more likely to refuse because they were not interested in CTs, because of family pressures, or they felt overwhelmed (NS)). DISCUSSION: This study is the first to directly compare ineligibility and refusal rates and reasons captured prospectively in AA and White cancer patients. The data are consistent with earlier studies that indicated that AA patients more often are deemed ineligible and, when eligible, more often refuse participation. However, differences in reasons for ineligibility and refusal by race have implications for a cancer center to participate in CTs appropriate for the population of patients served. On a broader scale, consideration should be given to modifying eligibility criteria and other design aspects to permit broader participation of minority and other underserved groups.

[Reality of healthcare access for migrant children in Mayotte]. / La réalité de l'accès aux soins des enfants de migrants à Mayotte.

The implementation of the social security system in 2005 in Mayotte has resulted in the end of free healthcare for all non-affiliated residents, primarily Comorians, due to the absence of the State Medical Aid (AME) in this department. Doctors of the World France opened a paediatric clinic in December 2009. The sociomedical data were collected during 5286 consultations in 2010. Analysis of these data demonstrates a link between access to healthcare for children and the residential status of their parents. The analysis concerns 2,350 patients met during consultations held by Doctors of the World France in Mayotte in 2010. The data have been electronically recorded and analysed by the Sphinx software. The results show that there are several obstacles to healthcare resulting in non-attendance. This situation is made worse if one of the parents has an irregular residential status and all the more so if both the parents have an irregular status. Affiliation to the social security system, however, improves the situation. The results show a delay in accessing healthcare, a poor vaccination programme and disturbing data on severe acute malnutrition. The specific healthcare measures in Mayotte do not respect the International Convention on the Rights of the Child. Direct affiliation to the social security system for children would entail a reduction in health insecurity for the children of parents with irregular residential status. It would also be necessary to reduce the factors that provoke fear of displacement, which would facilitate physical access to consultations.

Choice of opioids and the WHO Ladder.

Physicians in developing countries who start to develop new, palliative care services face real barriers because of opiophobia in their countries. These physicians need to convince their colleagues in their own institutions about the need to adopt clear policies concerning pain management and palliative care in general. Moreover, these physicians need to explain the importance of such new services to their administrators and often legislators at the national level. People in the Middle East are facing cultural, traditional, and religious obstacles with regard to the introduction of opioids into regular use both in hospitals and in the community. In many countries, these drugs are believed to be drugs of addiction and in some cases, even dangerous drugs. Our goal is to enhance the establishment of pain units, being it within the framework of the Oncology Center, Palliative Care Services, or as stand-alone units.

Unsteady balance: the constraints of informal care.

The enduring cultural image of cancer is of an acute and deadly disease that acts swiftly to end life. Although it is the case that cancer mortality rates remain obstinately high in industrial countries, cancers are now seen as a chronic disease with uncertainty in remission, new recurrence, palliation, and death. Caregivers' commitment, emotional involvement, and understanding of the patients' needs demonstrate that caring is a special way of being, thinking and growing within the experience of the illness trajectory. Caring is fundamental to human survival. It is understood to imply a distinct way of being, believing, and acting that calls for commitment, knowledge, and new coping skills. It motivates families and gives meaning and structure to life. Informal family caregivers of cancer patients are required to meet multidimensional needs, including treatment monitoring; treatment-related symptom management; emotional, financial, and spiritual support; and assistance with personal and instrumental care. Families are increasingly replacing skilled healthcare workers in the delivery of unfamiliar complex care to their ill family members despite the other obligations and responsibilities that characterize their lives.

A review of the use of biological mesh products in modern UK surgical practice: a religious and cultural perspective.

INTRODUCTION: The UK is an increasingly multicultural society. This change coincides with an increasing use of animal products in medicine and surgery and a change in the UK law of consent. The refusal of Jehovah's Witnesses to accept blood products is well known, but the use of animal products in surgery is a neglected topic. As society becomes more diverse and medicine becomes ever more advanced, there is increasing potential for a mismatch between what is medically possible and what is acceptable from a religious perspective. METHODS: Surgical products were identified by searching the literature and contacting manufacturing companies. Literature was identified by using PubMed and OVID (MEDLINE). Religious views were established by contacting national bodies for each group. FINDINGS: The views of common UK religious groups and the constituent parts of biological meshes are summarised in tables intended to be used as a reference during clinical practice. On an elective basis, the Islamic, Hindu. Sikh and Jain leaders contacted had strong views on avoiding animal derived products. The Christian and Jewish leaders contacted did not. All religious leaders contacted accepted the use of mesh derived from human tissue. All products, including those of porcine and bovine origin, were acceptable to all leaders contacted if the procedure was performed to save life. The highlighting of this issue should prompt earlier consideration and discussion in the surgical planning and the consenting process with all final decisions taken by both the surgeon and the individual patient.

Discharge against medical advice in culturally and linguistically diverse Australian children.

OBJECTIVES: This study quantifies the prevalence and rates of discharge against medical advice (DAMA) in culturally and linguistically diverse (CALD) children and assesses the independent association between CALD status and DAMA accounting for key demographic confounders in a large tertiary Australian hospital network. METHODS: Prospectively collected data between 2010 and 2018 were extracted from the hospital network electronic medical records system for admitted patients (n=192 037), outpatients (n=268 904) and between 2015 and 2018 for emergency department (ED) patients (n=158 903). CALD status was defined as 'preferred language being not English' and DAMA was measured as 'discharge at own risk' in admissions, 'no show' in outpatients, 'left without being seen' and 'did not wait' in ED. Data were analysed using χ² test, bivariate analysis and multivariate logistic regression. RESULTS: The prevalence of DAMA was 1.34% in admitted patients, 19.31% in outpatients and 12.64% in ED patients. Rates of DAMA were higher among CALD children compared to non-CALD children (1.75% vs 1.29% in admitted patients, 26.53% vs 17.92% in outpatients and 18.74% vs 11.61% in ED patients). CALD status was independently associated with DAMA in admitted children (OR=1.30, 95% CI 1.15 to 1.44), outpatients (OR=1.55; 95% CI 1.51 to 1.58) and ED patients (OR=1.60; 95% CI 1.53 to 1.66). CONCLUSION: Being from a CALD background places children at increased risks to DAMA. Implementing appropriate health service responses may ensure equitable access and quality care for children from CALD backgrounds to reduce the rates of DAMA and its associated ramifications.