Development of an instrument to measure the quality of care after the withdrawal of life-sustaining treatment in the adult intensive care unit

Abstract

Background: The majority of deaths in the intensive care unit occur after the withdrawal of life-sustaining treatment. Most patients often die within 24 hours after treatment has been withdrawn. The short time interval between treatment withdrawal and death has highlighted the urgent need to prioritize the quality of care provided for patients and their families during this period. In South Africa, the quality of care provided for patients after treatment withdrawal has been plagued with cultural differences, challenges, and ethical dilemmas. Currently, no instrument exists to measure the quality of care provided for patients at the end of life and their families after treatment is withdrawn in the adult ICU. Existing measuring instruments have been developed for western countries with no consideration for the South African context. Hence, using these measuring instruments, especially in a country where non-western cultures exist, may be inappropriate, unrealistic, and liable to fail, necessitating revision. Purpose: To develop an instrument to measure the quality of care provided for patients after the withdrawal of life-sustaining treatment and their family members in the adult intensive care unit. Methodology: An exploratory sequential mixed-methods research design was used. The study was conducted in two phases, namely: domain identification and item generation; and instrument development and validation. In Phase 1, a summary of findings from a scoping review of the literature and qualitative interviews with nurses, doctors, and family members were used to generate relevant content domains and items. Relevant items generated were synthesised and reduced to develop the first version of the measuring instrument in Phase 2. The instrument underwent further expert panel review for relevance and clarity. A content validity index and modified Kappa statistic were performed. Comments and feedback from the panel of nine experts were also used to assess the face validity of the instrument. Results: The instrument development and validation process yielded a final instrument that consisted of 64 items across 7 domains. From an initial set of 143 items, the content validity process found seven domains and 64 items. These included patient- and family-centered decision making (9 items), communication among the ICU team and with patients and families (12 items), continuity of care (3 items), emotional and practical support for patients and families (12 items), symptom management and comfort (7 items), spiritual care (5 items), and modifying the ICU environment (12 items). A study of content validity revealed that this instrument recorded an appropriate level of content validity. The overall content validity index of the instrument was high (S-CVI/Ave = 0.97) when using the average approach and moderate (S-CVI/UA = 0.77) when using the universal agreement approach. The moderate value of the S-CVI/UA can be advocated with respect to the high number of content experts that make consensus difficult. The instrument items also obtained excellent kappa values that ranged from 0.89 to 1.00. Conclusion: The researcher developed and validated the content of an instrument to measure the quality of care provided for patients and their families after the withdrawal of life-sustaining treatments in the adult ICU. This instrument will support the provision of care for patients and their families following treatment withdrawal and the training and education of healthcare providers in end-of-life care. It will also aid future research in the care of critically ill and dying patients in the ICU. Future research should conduct more assessments and pilot test the instrument.