Barriers to End-of-Life Care Delivery to Home-Dwelling Terminally-Ill Older Patients: A Qualitative Content Analysis

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.

This study is aimed to explore the barriers to EOL care delivery to home‑dwelling terminally‑ill older patients.

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.

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).

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.