Death and Dying: Confluences of Emotion and Awareness

Using data from an introspective ethnography, this paper proposes a modified theory of awareness among dying patients, their families and medical personnel. By incorporating the sociology of emotions, this modified theory provides a richer understanding of the complexity of relationships in death and dying than the previous literature which focuses on knowledge and the management of knowledge in social interactions in the context of dying. It is suggested that awareness based on knowledge and the cognitive processing of information not only obscures the emotional content of terminal illness, but also moves to the background the emotional work performed by dying patients and their families. The modified version of awareness theory recognises that emotion and cognition are intertwined and pays close attention to emotions within the social context.     

Barriers to Quality Care for Dying Patients in Rural Communities

CONTEXT: Barriers to providing optimal palliative care in rural communities are not well understood. PURPOSE: To identify health care personnel's perceptions of the care provided to dying patients in rural Kansas and Colorado and to identify barriers to providing optimal care. METHODS: An anonymous self-administered survey was sent to health care personnel throughout 2 rural practice-based research networks. Targeted personnel included clinicians, nurses, medical assistants, chaplains, social workers, administrators, and ancillary staff, who worked at hospice organizations, hospitals, ambulatory clinics, public health agencies, home health agencies, and nursing homes. FINDINGS: Results from 363 completed surveys indicated that most health care personnel were satisfied with the palliative care being provided in their health care facilities (84%) and that most were comfortable helping dying patients transition from a curative to a palliative focus of care (87%). Yet, many reported that the palliative care provided could be improved and many reported that family members' avoidance of issues around dying (60%) was a barrier to providing optimal care in rural health care facilities. CONCLUSIONS: Findings suggest that health care personnel perceive they are effective at providing palliative care in their rural health care facilities, yet face barriers to providing optimal end-of-life care. Results of this study suggest that differences in training and experience may influence health care personnel's perceptions of the existing barriers. It may be important in rural areas to customize interventions to both the professional role and the site of care.     

Social Accountability and Legal Empowerment Initiatives: Improving the Health of Underserved Roma Communities in Eastern Europe

Improving the protection of the right to health of ethnic Roma people is one of the most pressing public health challenges in contemporary Europe, as their life expectancy and health status remain significantly lower than their non-Roma counterparts.¹ This paper analyzes Roma-led accountability initiatives that embrace social accountability and legal empowerment approaches to advocate for equitable fulfillment of the right to health. While these initiatives have led to the elimination of some harmful health practices (such as illegal cash bribes and violent and abusive treatment by medical professionals) and to improvements in health care, and some Roma communities have become driving forces for local and national health system reforms for advancing the fulfillment of health rights, the health inequalities affecting Roma communities remain significant. This issue also remains largely overlooked by European health research and policy experts, who are mostly reluctant to incorporate analyses of ethnicity and racialization into their research on health inequalities in Europe. The COVID-19 pandemic has further exacerbated these health inequalities.     

End-stage renal disease among Roma and non-Roma: Roma are at risk

Objectives

Ethnic differences in the occurrence of end-stage renal disease (ESRD) are reported on various populations across the world, but evidence on Roma is lacking. The aim of this study was to explore the relative risk (RR) of ESRD for Roma who constitute a major minority in Slovakia.

Methods

Patients treated by means of hemodialysis during 2005–2008 were questioned for their ethnicity. Rates of ESRD among Roma and non-Roma based on hemodialysis data were calculated as well as the RR of Roma for ESRD. The latter was repeated after standardization for differences in age of both populations.

Results

Roma represented 11.6?% of all hemodialyzed patients. The RR of ESRD for Roma was 1.34, compared to the majority population. After age standardization, the RR for Roma was 2.85.

Conclusion

This study shows that the risk for ESRD is significantly higher for Roma than for non-Roma. A genetic propensity of Roma to renal failure may partially explain the higher risk. Moreover, a poorer control of risk factors for ESRD in Slovak Roma contributes to the increased risk.     

Ethical Disparities: Challenges Encountered by Multidisciplinary Providers in Fulfilling Ethical Standards in the Care of Rural and Minority People

ABSTRACT:  Context: Health care disparities are well documented for people living in rural areas and for people who are members of ethnic minorities. Purpose: Our goal was to determine whether providers report greater difficulty in providing care for rural than urban residents and for ethnic minorities than patients/clients in general in 4 practice areas of ethical relevance: attaining treatment adherence, assuring confidentiality, establishing therapeutic alliance, and engaging in informed consent processes. Methods: We received survey responses from 1,558 multidisciplinary medical and behavioral providers across rural and non-rural areas of New Mexico and Alaska in 2004 to assess a wide range of issues in providing health care. Findings: Providers reported some difficulties in fulfilling various ethical practices for all types of patients, but not more difficulty when caring for minority compared to nonminority patients/clients. However, they do report more frequent additional problems related to the practice issues of treatment adherence, therapeutic alliance, informed consent, and confidentiality with minority patients than others. Difficulties and more frequent additional problems are greater for providers in rural than in non-rural areas. Results generalize across both Alaska and New Mexico with few differences. Conclusions: We obtained evidence for disparity in care for patients/ clients who were minority group members, and clear evidence of disparity for people residing in rural compared to non-rural areas of 2 states with large rural areas.     

Ethical issues in communication of diagnosis and end-of-life decision-making process in some of the Romanian Roma communities

Medical communication in Western-oriented countries is dominated by concepts of shared decision-making and patient autonomy. In interactions with Roma patients, these behavioral patterns rarely seem to be achieved because the culture and ethnicity have often been shown as barriers in establishing an effective and satisfying doctor–patient relationship. The study aims to explore the Roma’s beliefs and experiences related to autonomy and decision-making process in the case of a disease with poor prognosis. Forty-eight Roma people from two Romanian counties participated in semi-structured interviews, conducted by a research team from the University of Medicine and Pharmacy of Iasi. Participants were recruited among the chronically ill patients and caregivers. The Roma community opposes informing the terminal patients about their condition, the “silence conspiracy” being widely practiced. The family fully undertakes the right of decision making, thus minimizing the patient’s autonomy. We identified ethical dilemmas concerning autonomy, lack of patients’ real decision-making power, and paternalistic attitudes exerted firstly by the family and, on demand, by the physician. Instead, the Roma patient benefits from a very active support network, being accompanied at the hospital by numerous relatives. The patient’s right to make autonomous decisions promoted in the Western countries and stipulated by the Romanian law has diminished value in the Roma community. For the Roma, the understanding of dignity is not simply individual and personal, but it is closely related to their cultural particularities. Ignoring their cultural values could create conflicts between healthcare providers and community.