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Almansour, Issa Mohammad Ali
Languages: English
Types: Unknown
This study explored the experiences of Jordanian critical care staff about the transition to, and provision of, end of life care. It examined the difficulties they encountered, and how they sought to care for and communicate with the families of patients who were approaching the end of life. The study took place in two University hospitals in different cities. A mixed methods design in two phases was adopted. The first phase employed the “National Survey of Critical Care Nurses' Perceptions of End-of-Life Care” (adapted with permission) to elicit the views of critical care staff (N=104) about the obstacles and facilitators to providing end of life care for critically ill patients and their families. In the second phase, qualitative interviews were conducted with staff (15 nurses; 10 junior doctors; 5 head nurses).\ud \ud The key overarching finding from the study is that staff experience moral distress when working with critically ill patients whom they perceive to be dying. There were three main dimensions to the experience of moral distress:\ud \ud First, nurses experience moral distress when they are aware when the patients are likely to die, know that continuing life sustaining treatment is futile and yet are expected to continue to provide treatment as normal to the patients. Aggressive modalities of treatments are usually pursued for most terminally ill patients, with both nurses and doctors perceiving there to be no planned, clear or distinct transition from curative focused care to end of life care.\ud \ud Second, with regard to their relationship with patients’ families, the staff found themselves to be in a problematic and paradoxical situation. One the one hand, they expected patients’ families to take the lead in the care decision making process and perceived that the power in decision-making should lie with patients’ relatives; but on the other hand, they also perceived that it is difficult and sometimes impossible to disclose bad news openly to families meaning that families are not fully informed in a way that would enable them to take the lead in the care decision making process. \ud \ud Third, staff have an appreciation of the principles of end of life decision making as a team activity and as a collaborative venture, but they are not able to put these principles into practice for many reasons, ranging from difficulties in their relationships with each other to health care system factors.\ud \ud This study sheds light on two central ethical problems in end of life decision-making in Jordan: the problem of disclosure of terminal prognosis at the end of life and limited involvement of nurses and junior doctors in the process of end of life communication and decision making. The study recommendations focus on developing practice in and disseminating understanding of ethically sound end of life decision-making.
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