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

Abstract

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.

Roma Never Die Alone

“…Moreover, many types of support are offered to Roma elders or people without family because among the precepts of Roma culture, respect for elders and not leaving anyone alone are tremendously important. We confirm that Roma culture revolves around the value of solidarity, one of the legacies remaining from the Roma ancestral generations and addressed in the works of van Hout and Staniewicz (2012), Sordé et al (2013), and Roman et al (2013;Roman et al, 2014). Specifically, we underline in our research the Roma value of respect for the elderly.…”

“…As indicated below, these values are especially valuable during the processes of illness and death among Roma people. Roman et al (2013) discuss the support that the Roma community offers to its elderly members at the end of their life. Notwithstanding the obstacles faced throughout their history as a minority, Roma people have generated communal solidarity (van Hout & Staniewicz, 2012) and placed respect toward elders as a fundamental value.…”

The health of segregated Roma: first-line views and practices: a case study in Slovakia using ethnographic methods

“…Grill 2017;Podolinska et al 2014;Skupnik 2007), but also in some qualitative studies focused on specific health-related aspects in Roma and similar groups (e.g. Condon et al 2015;Durst 2011;Jackson et al 2017;Jesper et al 2008;Kelly et al 2004;Oustinova-Stjepanovic 2017;Roman et al 2013;Tesăr 2012;Van Cleemput et al 2007).…”

Traditional Teaching versus Online Teaching of Forensic Autopsy Case study – Grigore T. Popa University of Medicine and Pharmacy in Iasi

“…The autopsy allows students to learn the forensic issues related to death, especially the legal framework that applies to the deceased, which is important as all doctors come into contact with a deceased person at some point in their careers. Direct exposure to autopsy also has a positive impact on the students' abilities of diagnosis and communication, and thus contributes to improving the quality of care that they will provide to their future patients, as well as the quality of communication with the patients' families, especially in the context of end-of-life issues and autopsy (Altaf et al, 2015;Bamber & Quince, 2015;McNamee et al, 2009;Roman et al, 2013Roman et al, , 2014Warter & Warter, 2018).…”