End of life care. Perspectives from families and caregivers

In industrialized countries, there is growing attention to improving the quality of healthcare provided to patients with terminal or chronic illnesses as they near the end of their lives. Many patients in wealthy nations reportedly die in severe pain, but little has been documented about pain or suffering at the end of life in less economically developed nations. This qualitative study explores end of life concerns in the Caribbean among health professionals and people who had lost a loved one. It found that many patients with terminal illnesses chose to die in their homes where they could be cared for by family and/or friends, but that these patients endured much pain and their caregivers also suffered. In the absence of national or institutional policy on pain relief or end of life care, most of these patients and their caregivers seek spiritual comfort. This paper illustrates the need for health professionals and policy makers to do more to relieve suffering at the end of life.