Patient Autonomy, Decision-making and Cultural Impact in Elder Care in Albania

Abstract

BACKGROUND: Maintaining patients’ autonomy and including them in the decision-making process is crucial in eldercare. This study explores the cultural impact of independence in Albanian nursing homes. This paper follows previous publications from the same project. AIM: Based on the previous research on ethical and legal issues, the aim was to identify how and why autonomy is frequently compromised. METHODS: An exploratory qualitative study with semi-structured interviews and field notes was conducted. The field notes and interviews were analyzed using inductive category formation following a qualitative content analysis approach to identify potential causes and core themes. For this study, 15 nurses from three public nursing homes, two private nursing homes, one palliative care center, and one daily care center in Albania were included in the study. The observations and interviews were conducted between June and August 2018 in 7 eldercare institutions. RESULTS: The study shows that autonomy is frequently compromised in this setting. Although residents have some freedom concerning movement, nutrition, and hygiene, they are mainly excluded from the decision-making process in treatment or palliative care. Patients are purposely misinformed about their diagnosis so that they live life “normally until the last day.” Here, a robust cultural aversion to talking about death comes together with a firm reliance on the family’s decision-making. CONCLUSION: The study indicates that strengthening patients’ rights by improving nurses’ education can lead to more severe family conflicts. Expanding patient rights can be perceived as limiting the rights of the family. This demonstrates the difficulty of imposing “western” health regulations in different cultural contexts. In addition to legal and ethical education, preparing nurses for conflicts with the residents’ families and creating awareness for fundamental patient rights among their relatives are critical steps to improve patients’ autonomy in Albania.

Difficulties and challenges experienced by nurses in eldercare institutions in Albania: A qualitative content analysis

“…In such situations, participants emphasized that they cannot protect the rights of elderly residents, most of whom are placed in institutions against their will and without their consent. Family members make decisions, although older people have the right to information, choice, and approval following relevant regulations and laws [ 9 ]. Despite the various conflicts nurses can encounter with colleagues or families, the importance of nurses’ ability to guarantee and protect the rights and wishes of older people in the centers where they work has been described and highlighted in earlier studies [ 16 ].…”

“…At the same time, there are only a few social workers and nursing assistants, even though the profession of social worker and nursing assistant is provided for in the authorized structure [ 3 , 4 ]. This occurs because neither university curricula nor training institutions in Albania provide adequate training for nursing assistants and social workers in caring for older people [ 8 , 9 ]. Nurses are considered the backbone of the healthcare system in providing essential healthcare services to the population.…”

“…These problems and challenges are related to the facilities’ physical environment and technical equipment, as well as the educational level of nurses [ 4 , 8 , 13 ]. The lack of staff training and a suitable environment is proven by the evidence to affect the quality of care provided to older people in eldercare facilities [ 9 ]. Empirical data revealed that nurses face difficulties in caring for the elderly due to communication and relationship issues with them, their relatives, or staff [ 8 , 10 , 14 ].…”

“…In addition to the above issues, nurses working in LTC facilities confront many other difficulties and challenges in providing qualitative care to older people [ 14 ]. Since there is insufficient data on nurses’ challenges and difficulties while caring for older people in eldercare institutions in Albania, the evidence mentioned above comes mainly from studies conducted in other countries [ 1 , 9 , 14 ]. Most older individuals in Albania receive care from their families, particularly when they face serious illnesses or lose the ability to work [ 1 , 3 , 4 , 6 ].…”

End of life care during the COVID‐19 pandemic: A qualitative study on the perspectives of nurses and nurse assistants

“…Health care professionals play a significant role in combating this health problem, particularly when patients suffer from severe symptoms that require hospital admission for treatment or even palliative care, as the main providers of end‐of‐life care. Several studies have demonstrated that nurses and nurse‐assistants experience pressure, burden, and emotional challenges concerning an increase in patient deaths (Hanna et al, 2021a , 2021b ; Podgorica, Flatscher‐Thöni, et al, 2021 ; Podgorica, Pjetri, et al, 2021 ; Podgorica, Shabani, et al, 2022 ) and insufficient resources to provide care (Mehta et al, 2021 ; Podgorica, Shabani, et al, 2022 ; Podgorica, Zenzmaier, et al, 2022 ). Previous studies focused on emotional and psychological distress that affected health care professionals' well‐being (Huang et al, 2020 , 2021 ; Mitchinson et al, 2021 ; Rathnayake et al, 2021 ).…”