What helps or hinders end-of-life care in adult intensive care units in Saudi Arabia? A mixed methods study

Abstract

Background: In the intensive care unit (ICU), many patients are dying despite advanced therapeutic technology and optimised treatment. The critical care team is expected to deliver end-of-life care for the dying patient and their family. However, it is challenging to provide adequate support to families due to the ideas and emotions associated with the end of life. This can be influenced by different beliefs and cultures among patients and healthcare professionals. However, while there has been significant progress in introducing palliative and end-of-life care into the healthcare system in Saudi Arabia, specialist services are not widely available, public knowledge is limited, and there is a persistent focus on curative treatments. Added to this research about end-of-life care practices in intensive care units in Saudi Arabia is limited. The research questions of this study are 1) What end-of-life care is provided by healthcare teams in adult intensive care units in Saudi Arabian military hospitals? 2) What helps or hinders effective end-of-life care in adult intensive care units in Saudi Arabian military hospitals? Method: A mixed methods, sequential, explanatory design was applied. It consists of two phases. Phase 1: a cross-sectional study design with a convenience sample of 251 ICU healthcare providers (nurses and physicians) who were recruited from three military hospitals in Saudi Arabia. The Palliative and End-of-Life Care Index (PEOL Care Index) was used to assess palliative and end-of-life care education, practice, and perceived competence among intensive care unit staff. Additionally, 15 ICU managers completed the questionnaire on the barriers to optimal end-of-life care and the perceived benefit of potential strategies to improve end-of-life care. Phase 2: qualitative descriptive design involving semi-structured interviews with five bereaved family members and then 14 ICU healthcare providers (nurses, physicians and managers). Results: From the overall synthesis of the multiple data sets, this study identified five main themes including organisational structure and management, communication, ICU environment, visiting time, and end-of-life aspects. End-of-life aspects were explored through subthemes involving physical and comfort care, psychological care, spiritual support, social support and after-death support. Helping or hindering factors in relation to end-of-life care were identified within these themes. Established guidelines and checklists in all three ICUs provided a basis for delivering end-of-life care and addressing essential aspects such as pain and symptoms management, communication with families, and providing needed support. However, a significant gap remains in the availability of specific guidelines for end-of-life decision- making, leaving healthcare providers without clear directives in complex challenging situations. This gap is exacerbated by the lack of integrated palliative care services within all three ICUs, compounded by a shortage of specialists and limited education and training in end- of-life care among healthcare professionals. Although communication strategies including family meetings and daily updates were in place, hierarchical communication led to families experiencing a lack of ongoing communication with bedside professionals. This was compounded by language barriers for the majority of nurses from overseas and family denial of the poor prognosis. The physical design of the ICU and limited visitation also impeded good communication. Consequently, families experienced a lack of psychological, spiritual and social support. Conclusion: The apparent gap between the intended services and the actual experiences of families indicates a need for better communication, coordination, and implementation of support systems to ensure that the emotional and spiritual needs of patients and their families are adequately addressed. The integration of palliative care in an intensive care setting is impeded by organizational structure including availability of resources and education and also professionals’ perceptions. Further research is needed to evaluate useful strategies for integrating palliative care into the ICU. There is also a need for research involving a multidisciplinary approach, combining insights from social, religious and palliative care specialists to improve end-of-life care in the ICU within the unique context of Saudi Arabia.