It Possible to Die at Home? Analysis of the Brazilian and French Scenarios

Abstract

Objective: to describe and analyze the challenges and the possibilities of the return to the home in palliative care in the Brazilian and French scenarios. Method: ethnographic study conducted in two hospitals, homes and medical-social establishments. Six people in palliative care, four family members and eight health professionals participated in the study. The data were organized through discursive mapping and analyzed from a cultural and Foucaultian perspective. Results: to present the results, two categories were elaborated: Strategies for hospital discharge in palliative care and between the family, the state and justice: barriers to return home. It is evident that, in Brazil and in France, the return to the home is an event that faces resistance from the families. This fact is mainly related to the cultural conceptions that hospital palliative care units are places capable of providing comfort at the end of life, and difficult access to home care programs and services. In both countries, due to the complexity of hospital discharge, families and managers judicialize this process. Conclusion: the return to the home in palliative care depends on the way death is signified in a culture, the family settings and the existence or not of a network of palliative care in the health systems of each country.Objetivo: descrever e analisar os desafios e as possibilidades do retorno ao domicílio em cuidados paliativos nos cenários brasileiro e francês. Método: estudo etnográfico realizado em dois hospitais, domicílios e estabelecimentos médicosociais. Participaram da pesquisa seis pessoas em cuidados paliativos, quatro familiares e oito profissionais de saúde. Os dados foram organizados por meio de mapeamento discursivo e analisados sob a perspectiva cultural e foucaultiana. Resultados: para apresentação dos resultados foram elaboradas duas categorias: Estratégias para a alta hospitalar em cuidados paliativos e Entre a família, o Estado e a Justiça: entraves para o retorno ao domicílio. Evidencia-se que, no Brasil e na França, o retorno ao domicílio é um evento que enfrenta resistência por parte das famílias. Tal fato relaciona-se principalmente com as concepções culturais de que unidades hospitalares de cuidados paliativos são os locais capazes de proporcionar conforto no final da vida, e com o difícil acesso a programas e serviços de atenção domiciliar. Em ambos os países, em razão da complexidade da alta hospitalar, famílias e gestores judicializam esse processo. Conclusão: o retorno ao domicílio em cuidados paliativos depende do modo como a morte é significada em determinada cultura, das configurações familiares e da existência ou não de uma rede de cuidados paliativos nos sistemas de saúde de cada país.

Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review

“…Included studies were published 2004-2020, and conducted in seven Latin American countries (Argentina, [18][19][20][21][22][23][24] Brazil, Chile, [22][23][24]53 Colombia, [54][55][56][57][58] Cuba, 59 Guatemala 22,23,60 and Mexico 61,62 ). There were 35 qualitative studies (165 patients, 281 caregivers), [18][19][20][25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][41][42][43][44][45][47][48][49][50][51][52]…”

“…61 Data from two international 20,41,62 Qual/Quant x x x Place of end of life care and death Refs. 20,26,28,[30][31][32][33][34]37,39,42,44,[49][50][51]54,56,57,62 Qual/Quant x x x x God and religious community as source of hope and support Refs. 20,26,28,29,30,32,35,37,38,42,[44][45][46][47][48]50,51,[54][55][56]60 Qual/Quant x x x x Caregiver's role Shifting identities and roles 21,28,33,39,50,52,…”

“…20,26,28,[30][31][32][33][34]37,39,42,44,[49][50][51]54,56,57,62 Qual/Quant x x x x God and religious community as source of hope and support Refs. 20,26,28,29,30,32,35,37,38,42,[44][45][46][47][48]50,51,[54][55][56]60 Qual/Quant x x x x Caregiver's role Shifting identities and roles 21,28,33,39,50,52,54 Qual/Quant x x x Motivations for caring 20,25,30,[32]…”

“…Proactive caregivers, devotion and selfsacrifice 20,21,25,28,30,32,33,38,39,42,44,47,49,51,54,57 Qual/Quant x x x Mixed understandings of palliative care Refs. 25,36,37,47,49,51,[56][57][58] Qual x x studies exploring patients' decisional control preferences through application of the Control Preference Scale showed that a minority had a preference to delegate the decision to the physician or family member (ranging from 12% 24 to 24% 23 ).…”

“…(caregiver, Brazil) 41 Place of care and place of death. 20,26,28,[30][31][32][33][34]37,39,42,44,[49][50][51]54,56,57,62 Studies on preferences for place of care and place of death mentioned home and hospital only, with only one mentioning hospice. 20 Patients and caregivers who preferred the hospital setting considered that it provided more security, support and resources, relieved emotional and financial burdens, and provided respite for caregivers.…”