An exploration of end-of-life care in the intensive care unit: A systematic review of qualitative studies investigating the experiences and perceptions of the patient's family

Background and aim: In the absence of rigorous evidence-based clinical guidelines, end-of-life care (EOLC) practices in the ICU vary considerably. Ideally, EOLC should be appropriately planned, implemented and informed by robust evidence; however the ICU is a setting where a patient’s health can deteriorate rapidly. Consequently, families (including family members, relatives and carers) are particularly vulnerable, and may experience shock, uncertainty and powerlessness in this technical and unfamiliar environment during EOLC. Families are optimally positioned to identify the key components of care at the end of life in the ICU, however their views and needs are under-represented in key policy and guidance documents. A potentially rich source of families’ views is qualitative studies. By capturing the complex experiential aspects of healthcare phenomena, qualitative evidence can provide knowledge that may inform the delivery of healthcare. A number of qualitative studies have examined the perspective of families on EOLC in the ICU, however, a systematic review of this evidence has not been undertaken. Therefore, a systematic review and meta-synthesis was conducted to identify the experiences and perceptions of patients’ families, of the EOLC delivered in the ICU setting, when life-sustaining treatments are withheld or withdrawn. The findings of this systematic review will provide policy-makers, clinicians and researchers with robust evidence to: (1) inform the development of future policy and evidence-based clinical guidelines; (2) promote quality and consistency of EOLC delivery, and; (3) assist with optimising the EOLC experiences of the patient’s family in the ICU, when life-sustaining treatments are withheld or withdrawn. Methods: Systematic review and meta-synthesis was conducted using meta-aggregation. A comprehensive search for eligible published and unpublished qualitative studies (January 2006 – May 2016) was conducted across seventeen electronic databases. Quality assessment, data extraction, data synthesis and ConQual (a method used to rate the confidence of the synthesised findings) were conducted using an adaption of the methods of meta-aggregation. Thematic analysis processes were added to achieve analytic depth. Results: Thirteen studies of variable quality met the inclusion criteria. No Australasian studies were identified. Data collection methods across the studies included face-to-face interviews and focus groups. Meta-aggregation and thematic analysis resulted in 14 Page 13 of 229 categories and five synthesised findings, as follows: (1) the dying person: valued attributes of patient care; (2) communication with the family and within the healthcare team; (3) preparing the family and promoting a peaceful family-centred death; (4) family-centred support and care, and; (5) bereavement care. A conceptual model of preparedness was developed based on these findings that reflects the elements of EOLC care that are most valued by families. Central to preparedness was communication. Conclusion: The synthesised findings showed that families experienced both positive and negative aspects of EOLC, and have unmet needs for communication, family-centred support and care and bereavement care. The conceptual model of preparedness, which reflects families’ views of high-quality EOLC in the ICU, can be utilised to target areas for practice improvement. As defined in this study, the concept of preparedness in the ICU, explains the circumstance in which families can best manage the death, their sadness, loss, and grief. The findings show that nurses in particular are optimally positioned to provide individualised support and care that aligns with the values, needs and wishes of each family. Achieving a state of preparedness in the ICU setting requires a unique combination of care and support, as reflected in the model. Research, policy and education recommendations are suggested based on the findings of this systematic review. An Australasian qualitative, multi-centre study that captures this healthcare phenomenon would provide robust evidence to inform region-specific policy and guideline development. In addition, a qualitative synthesis that incorporates evidence on the views of survivors of critical illness, families of survivors, and clinicians about the quality of EOLC delivered in the ICU setting, will contribute to our understanding of the barriers and facilitators to effective EOLC. Development of a practice standard on the delivery of EOLC in the ICU is also recommended, that is aligned with key performance indicators and mandated by registration bodies and governing critical care nursing/medicine agencies. Finally, undergraduate and postgraduate courses should consider preparing nurses to provide individualised care across a range of clinical settings to the dying person and their family, including effective communication and bereavement care.