PATIENTS, FAMILY CAREGIVERS, AND HEALTH CARE PROVIDERS LIVED EXPERIENCE OF DECISION MAKING NEAR END OF LIFE: A QUALITATIVE APPROACH 

By 

Elham Hani Othman

Supervisor

Prof. Inaam Abdallah Khalaf

Co-Supervisor:

Dr. Ruqayya Zeilani

ABSTRACT

Decision making near the end of life is an overwhelming experience for patients and their family caregivers. Health care providers need appropriate preparations to care for this client group. The study aims to explore the lived experience of patients, family caregivers, and health care providers, intending to develop recommendations that facilitate the decision making process near end of life. A qualitative descriptive phenomenological approach was employed with a purposive sample of eight patients, seven family caregivers, seven nurses, and six physicians from two institutions that provide palliative and end of life care services in Jordan. Data were collected using semi-structured interviews with patients and family caregivers and focus group discussions with nurses and physicians. Colaizzi’s method was used to analyze the data. 

 The participants’ experience revealed shortcomings in the decision making process; they explained that most decisions were being made by physicians or family caregivers, while some patients demanded their right to decide. The patients described their concerns about inevitable death and spoke about preparations to have a ‘good death.’ The family caregivers mentioned factors that influenced their decisions, expressed the burden of decision making and caregiving, and emphasized the need for facilitating a 'good death' for their patients. Alternatively, health care providers described their efforts to have collaborative decisions within a demanding situation. Nurses and physicians’ decisions had many challenges and interlinked with overwhelming emotions and concerns. Recommendations to overcome decision making challenges were discussed. Decision making near the end of life is a challenging experience that requires special considerations and collaborative efforts from patients, families, and health care providers.

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