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.

Acute hospital staff require adequate training, including symptom control, and the correct environment in which to deliver dignified and person-centred end-of-life care. Specific models/approaches to care can be beneficial, if adequate training regarding implementation is given. The needs of family members also require consideration, particularly following bereavement.

BackgroundPeople with advanced cancer frequently attend unscheduled care, but little is known about the factors influencing presentations. Most research focuses on accident and emergency (A&E) and does not consider GP out-of-hours (GPOOH).AimTo describe the frequency and patterns of unscheduled care use by people with cancer in their last year of life and to examine the associations of demographic and clinical factors with unscheduled care attendance.Design and settingRetrospective cohort study of all 2443 people who died from cancer in Tayside, Scotland, during 2012–2015. Clinical population datasets were linked to routinely collected clinical data using the Community Health Index (CHI) number.MethodAnonymised CHI-linked data were analysed in SafeHaven, with descriptive analysis, using binary logistic regression for adjusted associations.ResultsOf the people who died from cancer, 77.9% (n = 1904) attended unscheduled care in the year before death. Among unscheduled care users, most only attended GPOOH (n = 1070, 56.2%), with the rest attending A&E only (n = 204, 10.7%), or both (n = 630, 33.1%). Many attendances occurred in the last week (n =1360, 19.7%), last 4 weeks (n = 2541, 36.7%), and last 12 weeks (n = 4174, 60.3%) of life. Age, sex, deprivation, and cancer type were not significantly associated with unscheduled care attendance. People living in rural areas were less likely to attend unscheduled care: adjusted odds ratio (aOR) 0.64 (95% confidence interval = 0.50 to 0.82). Pain was the commonest coded clinical reason for presenting (GPOOH: n = 482, 10.5%; A&E: n = 336, 28.8%). Of people dying from cancer, n = 514, 21.0%, were frequent users (≥5 attendances/year), and accounted for over half (n = 3986, 57.7%) of unscheduled care attendances.ConclusionUnscheduled care attendance by people with advanced cancer was substantially higher than previously reported, increased dramatically towards the end of life, was largely independent of demographic factors and cancer type, and was commonly for pain and palliative care.

As physical function declines and symptoms increase, patients are more worried themselves and perceive increased anxiety within their support network. However, this circle of anxiety did not impair the perception that feelings could be shared within the support network.