Gaining consensus on family carer needs when caring for someone dying at home to develop the Carers' Alert Thermometer (CAT): a modified Delphi study

Aim To report a multi-phase modified Delphi study conducted with carers and professionals to identify the priority areas for inclusion in an alert screening tool for carers providing support to someone dying at home. Background Internationally, there is a growing emphasis on increasing choice for patients who wish to die at home which relies heavily on care provided by the unpaid family carers. Family carers can have high levels of unmet needs comprising their psychological and physical health and their ability to provide effective care and support. Development of an alert tool to identify carers' needs in everyday practice required identification and consensus of the priority areas of need for inclusion. Design Multi-phase modified Delphi study and instrument development. Method Qualitative and quantitative data collection took place between 2011–2013 with 111 carers and 93 professionals to identify carers' needs and gain consensus on the priority areas for inclusion in the alert tool. An expert panel stage and final evidence review post-Delphi were used. Results The Delphi panels had high levels of agreement and consensus. Ten areas of carer need across two themes of ‘the current caring situation’ and ‘the carer's own health and well-being’ were prioritized for inclusion in the alert tool. An optional end-of-life planning question was included following the final stages. Conclusions The results provide evidence of carers' needs to be assessed, areas for consideration in the education of those who support carers and someone dying at home and targeting of services, while demonstrating the usefulness and adaptability of the Delphi method

Accounting for Voluntary Hospices in England: A Business Model Perspective

This paper accounts for the sustainability of voluntary hospices in England that provide palliative end of life care for patients. A critical evaluation of the challenges facing hospices in England can be located within a ‘descriptive business model’ that makes visible stakeholder relations. Changes to these stakeholder relations, and how they impact upon the viability of the hospice business model, can be captured within a ‘narratives and numbers’ investigative framework. Interviews with senior clinical and non-clinical managers in four hospices provide rich ‘narratives’ that reveal how the hospice business model is evolving. Whilst financial disclosures extracted from hospice financial statements generate ‘numbers’ which can be employed to explore the impact of changes in stakeholder relations upon financial viability. Our argument is that the hospice business model depends upon sustaining a complex network of stakeholder relations in order to maintain operational and financial viability

End-of-life care decisions for haemodialysis patients - ‘We only tend to have that discussion with them when they start deteriorating’

Background Haemodialysis patients receive very little involvement in their end-of-life care decisions. Issues relating to death and dying are commonly avoided until late in their illness. This study aimed to explore the experiences and perceptions of doctors and nurses in nephrology for involving haemodialysis patients in end-of-life care decisions. Methods A semi-structured qualitative interview study with 15 doctors and five nurses and thematic analysis of their accounts was conducted. The setting was a large teaching hospital in Wales, UK. Results Prognosis is not routinely discussed with patients, in part due to a difficulty in estimation and the belief that patients do not want or need this information. Advance care planning is rarely carried out, and end-of-life care discussions are seldom initiated prior to patient deterioration. There is variability in end-of-life practices amongst nephrologists; some patients are felt to be withdrawn from dialysis too late. Furthermore, the possibility and implications of withdrawal are not commonly discussed with well patients. Critical barriers hindering better end-of-life care involvement for these patients are outlined. Conclusions The study provides insights into the complexity of end-of-life conversations and the barriers to achieving better end-of-life communication practices. The results identify opportunities for improving the lives and deaths of haemodialysis patients