No abstract

The spread of pandemic COVID-19 has created unprecedented need for information. The pandemic is the cause of significant mortality and with this the need for rapidly disseminated information for palliative care professionals regarding the prevalence of symptoms, their intensity, their resistance or susceptibility to symptom control and the mode of death for patients.MethodsWe undertook a systematic review of published evidence for symptoms in patients with COVID-19 (with a specific emphasis on symptoms at end of life) and on modes of death. Inclusion: prospective or retrospective studies detailing symptom presence and/or cause or mode of death from COVID-19.Results12 papers met the inclusion criteria and gave details of symptom burden: four of these specifically in the dying and two detailed the cause or mode of death. Cough, breathlessness, fatigue and myalgia are significant symptoms in people hospitalised with COVID-19. Dyspnoea is the most significant symptom in the dying. The mode of death was described in two papers and is predominantly through respiratory or heart failure.ConclusionsThere remains a dearth of information regarding symptom burden and mode of death to inform decisions regarding end-of-life care in patients dying with COVID-19. Rapid data gathering on the mode of death and the profile of symptoms in the dying and their prevalence and severity in areas where COVID-19 is prevalent will provide important intelligence for clinicians. This should be done urgently, within ethical norms and the practicalities of a public health, clinical and logistical emergency.

Case study is a long-established research tradition which predates the recent surge in mixed-methods research. Although a myriad of nuanced definitions of case study exist, seminal case study authors agree that the use of multiple data sources typify this research approach. The expansive case study literature demonstrates a lack of clarity and guidance in designing and reporting this approach to research. Informed by two reviews of the current health care literature, we posit that methodological description in case studies principally focuses on description of case study typology, which impedes the construction of methodologically clear and rigorous case studies. We draw from the case study and mixed-methods literature to develop the DESCARTE model as an innovative approach to the design, conduct, and reporting of case studies in health care. We examine how case study fits within the overall enterprise of qualitatively driven mixed-methods research, and the potential strengths of the model are considered.

Currently, there is a paucity of research examining distress informed by family systems theories. This review proposes that distress in families in palliative care can be conceptualised and illustrated within a tiered model of distress. Further research is merited to advance current explanatory frameworks and theoretical models of distress.