Barriers to end-of-life care delivery to home-dwelling terminally-ill older patients: A qualitative content analysis

• Main Authors: Manijeh Dehi, Kian Norouzi, Farahnaz Mohammadi, Reza Negarandeh
• Format: Article
• Language: English
• Published: Wolters Kluwer Medknow Publications 2021-01-01
• Series: Nursing and Midwifery Studies
• Subjects: aged; death; palliative care; qualitative research; terminal care
• Online Access: http://www.nmsjournal.com/article.asp?issn=2322-1488;year=2021;volume=10;issue=2;spage=121;epage=129;aulast=Dehi
• ISSN: 2322-1488; 2322-1674

Background: In the last days of life, home-dwelling terminally-ill older patients have complex care needs. End-of-life (EOL) care for these patients is usually delivered at home. However, there is limited information about the barriers to EOL care delivery to home-dwelling terminally-ill older patients. Objectives: This study is aimed to explore the barriers to EOL care delivery to home-dwelling terminally-ill older patients. Methods: This qualitative study was conducted in 2017–2018. Ten family caregivers and ten health-care providers were purposively selected. The main inclusion criterion was the experience of EOL care delivery to home-dwelling terminally-ill older patients. Data were collected through semi-structured interviews and were analyzed through conventional content analysis. In total, 23 interviews were held with twenty participants. Results: The barriers to EOL care delivery to home-dwelling terminally-ill older patients were categorized into the following three main categories and ten subcategories: inappropriate community-based healthcare context (subcategories: lack of public home care services, lack of palliative/hospice care services, legal/ethical dilemmas, and wrong cultural beliefs leading to wrong EOL care), unsupportive healthcare providers (subcategories: limited preparation for EOL care delivery, negligence towards appropriate home care delivery, and indifference to patients' and their families' rights), and inappropriate family conditions (subcategories: families' lack of care-related knowledge and skills, families' poor financial status, and tension in families). Conclusion: There are different familial, financial, professional, organizational, and social barriers to EOL care delivery to home-dwelling terminally-ill older patients. Culturally-appropriate policies and strategies are needed for operationalizing EOL care, integrating it into the public health-care system, and preparing healthcare providers and family caregivers for its delivery.