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Background Home is the preferred place of care and death for most people with advanced illness. Aim To examine and describe the published qualitative literature on the lived experiences of dying at home, to characterise the participants and their contexts and to identify key gaps, with a view to informing future research. Design and Setting A scoping literature review in accordance with the PRISMA-ScR guideline. Method The online databases CINAHL and MEDLINE were searched with relevant MeSH terms and keywords to identify primary qualitative research published between 2010 and 2022, exploring the lived experience of patients, families and/or unpaid carers in the United Kingdom. Results In total, 462 papers were screened, 58 underwent full text review and 13 studies were retained in the final set. All studies explored the experience of bereaved family and/or unpaid carers and only one study interviewed a dying person. Where specified, the majority of experiences related to deaths from cancer, many with specialist palliative care team involvement. Included papers yielded a breadth of diverse findings, with the most common subject themes relating to the availability and quality of care and support for families and carers. Conclusion There is limited published evidence exploring lived experiences of end-of-life care at home and this constrains the extent to which community services can be evidence-informed in their design and delivery. More research is needed to examine the first-hand experiences of people who are dying at home, particularly for those with non-cancer conditions and where specialist services are not involved.
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OBJECTIVES: Breathlessness is the most significant symptom in those dying of COVID-19. Historically, though, it has often been palliated poorly at end of life. The aim of this work was to assess whether breathlessness in patients dying from COVID-19 was being managed appropriately. METHODS: A multicentre, retrospective analysis of clinical data was undertaken. Patients who had died of COVID-19 across three acute hospitals over a 2-month period were included. Those already prescribed background opioids and those who died in intensive care were excluded. Data were collected from clinical notes, where available. RESULTS: 71 patients from 18 wards (3 hospitals) were included. The median total dose of opioid and midazolam given in the last 24 hours of life (continuous subcutaneous infusion ± 'as required' medication) was 33 mg (14-55) and 15 mg (6-26), respectively. 37 patients (52%) were prescribed continuous subcutaneous infusions. There were 426 recorded respiratory rates of at least 25 breaths per minute, for which an opioid or benzodiazepine was given in 113 (27%) of instances. CONCLUSIONS: Less than a third of episodes of breathlessness, as measured by respiratory rate, were palliated with anticipatory medicines. Specific palliative care guidelines for COVID-19 are necessary but may not always be followed.
