Involvement of Jordanian Patients and Their Families in Decision Making Near End of Life, Challenges and Recommendations

Objectives: This study aims to explore the challenges in involving patients and their families in decision making near end of life and to provide recommendations to overcome these challenges. Methods: A qualitative descriptive phenomenological approach was used with a purposive sample of 8 patients, 7 family caregivers, 7 nurses, and 6 physicians from 2 institutions that provide palliative and end-of-life care services in Jordan. Data were collected using interviews with patients and family caregivers and focus group discussions with nurses and physicians. Colaizzi's method was used to analyze the data. Findings: The thematic analysis revealed 5 themes representing the participants' experiences of challenges with decision making near end of life. The identified challenges are (1) struggle with lack of information; (2) improper communication; (3) patient's or family's decision: the cultural taboo; (4) health care providers prefer staying in their comfort zone; and (5) the paradox of surviving and letting go. In addition, the participants endorsed several recommendations to raise public awareness of palliative and end-of-life care, amplify the patients' voice, and raise the bar of communication sensitivity. Conclusions: Decision making near the end of life is a challenge. However, the current study highlighted several areas for improvement that can improve the process and optimize patients' and their families' involvement.