End-of-life care elements for people living with advanced cancer and family members in intensive care units in Saudi Arabia

Abstract

Background People living with advanced cancer’ end-of-life care preferences in oncology units, medical-surgical units, nursing homes and palliative care services have been established in a number of countries, including Saudi Arabia. However, less is known about the end-of-life care preferences of people living with advanced cancer in intensive care units and family members in Saudi Arabia. AimThe studies in this thesis aimed to determine end-of-life care preferences for people living with advanced cancer in intensive care units and family members in Saudi Arabia, and to develop and pilot test end-of-life care preference tools for use in intensive care clinical settings in Saudi Arabia. ObjectivesThe objectives of the studies in this thesis were to summarise systematically the evidence in the peer-reviewed literature on the elements of end-of-life care in intensive care units from the perspective of people living with advanced cancer and their family members; to determine the end-of-life care preferences of people living with advanced cancer and family members in intensive care units in Saudi Arabia; and to quantify the findings by developing and pilot-testing an end-of-life care preference tool with people living with advanced cancer in intensive care units in Saudi Arabia and with family members. Research Design A systematic literature review was undertaken to identify end-of-life care elements and preferences from the perspectives of people living with advanced cancer in intensive care settings and family members. A Sequential Exploratory Mixed-Methods design was used to address the remaining objectives of the research. Study One involved qualitative methods, undertaking semi-structured interviews with people living with advanced cancer and family members at two study sites, conducted separately to elicit independent responses from participants about end-of-life care elements. The findings informed the design of Study Two, which involved developing and pilot-testing two end-of-life care preference tools. Results The systematic search of the literature identified 12 articles reporting outcomes from 10 studies. The majority were retrospective chart reviews (n=7), conducted in developed countries (n=9). The literature suggests that care preferences change over time with deteriorating physical condition, and that marital status, gender and ethnicity appear to influence care preferences. The elements of patient-centred communication and shared decision-making are critical, as is teamwork and coordination of care through the involvement of a palliative care team.The studies examining patient preferences, and/or the reception of these preferences by healthcare staff, were aligned with fewer than half of the 10 essential elements for end-of-life care identified in the Australian National Consensus Statement. Very few studies were found that explored end-of-life care elements for people living with advanced cancer and family members in intensive care units in any country, but even fewer were conducted in developing countries or in countries where cultural and/or religious differences may influence end-of-life care preferences. This gap reinforced the need for research in this area in the Saudi Arabian context. The results from the systematic literature review informed the prompt questions for the semi-structured interviews in Study One.Study One generated five elements of end-of-life care for people living with advanced cancer, including experience of respect and dignity, not being in pain, experience of comfort, being at peace, and closeness to significant others. These elements were generated from 15 interviews with people living with advanced cancer. Similarly, five elements of end-of-life care were generated from 20 interviews with family members of people living with advanced cancer: not being in pain, experience of respect and dignity, being at peace, emotional and psychological support, and closeness to significant others. These elements, along with those identified in the systematic literature review, informed the statements of care included in both end-of-life care preference tools developed in Study Two.Study Two involved five experts in assessing the content validity of the statements of care included in the tools. The tool for people living with advanced cancer consisted of 13 statements, and the tool for family members consisted of 14 statements. A total of 92 participants, 49 for each tool, completed the tools for the pilot study. The Cronbach’s alpha scores for the tools were 0.759 and 0.720 respectively. Conclusions End-of-life care preferences identified by people living with advanced cancer and family members in intensive care units in Saudi Arabia were similar to those receiving end-of-life care in other settings, such as palliative care settings and in other countries. However, there were subtle differences, with religious needs featuring strongly for participants in this study. The tools developed in this study for use in intensive care units in Saudi Arabia had acceptable internal consistency; however, further testing with a greater number of participants is needed.