The threat of death due to COVID-19 has heralded widespread concern, as witnessed by increased levels of anxiety across generations (Office for National Statistics (ONS), 2020a; 2020b), and it has re-introduced the topic of death and mortality into many conversations. In earlier times, when the survival of infants into childhood and children into adulthood was the cause of celebration, the death of family members was witnessed regularly, and the topic of death was not a taboo subject. While the ONS (2020a) report indicated that younger adults were more optimistic about the future than older adults, they, too, were concerned about school/university, work, household income and wellbeing. Adults aged 60 years and over were worried about how COVID-19 had impacted their lives, and this affected their wellbeing, coupled with the loss of normal activities and consequent boredom (ONS, 2020b).
These survey data from older people highlight the importance of quality of life rather than years of life if people's ‘twilight’ years are to be enjoyed rather than endured. Indeed, it may be a mistake to believe that everyone with frailty or multiple or serious health conditions wants their life extended or perhaps protected from an infection such as COVID-19 that may end their life, as evidenced by the growing support for assisted dying when individuals deem their life insufferable (Dignity in Dying, 2020). This is difficult ethical territory, as witnessed with the debates accompanying the Assisted Suicide Bill (Scotland) 2013, Lord Falconer's Assisted Dying Bill 2014 and Robert Marris's Assisted Dying Bill 2015.
Among the many changes resulting from the COVID-19 pandemic, usual community healthcare practice was suspended, with most face-to-face professional–patient interactions replaced by video and other forms of consultations. Simultaneously, the number of people dying in community settings rose significantly, with anticipatory prescribing guidance and practice changing in response (Antunes et al, 2020). An online survey of 261 practitioners working in community palliative care in the UK and Ireland also confirmed the greater use of remote assessment and clinical support rather than in-person consultations (Antunes et al, 2020). The researchers reported changes in the route of administration, quantities prescribed and doses and ranges, with concerns about the availability of health professionals to administer subcutaneous injections leading to changes to routes so that carers could enable drug delivery. They acknowledged a lack of evidence about pharmacokinetics to inform best-practice guidelines regarding drugs, formulations and doses (Antunes et al, 2020). Unfortunately, a feasibility study of training carers to administer as-needed subcutaneous medication for breakthrough symptoms failed to recruit satisfactorily and had particular difficulties retaining the usual-care sample, so progression to a full randomised controlled trial is unlikely (Poolman et al, 2020).
Necessity has stimulated practice changes so that quality end-of-life care (National Institute for Health and Care Excellence, 2019) can continue despite the seismic changes in healthcare delivery. The rise in the number of people dying in community settings is welcome if it reflects preference rather than expediency, but caution is needed where best-practice evidence is lacking.
‘Indeed, it may be a mistake to believe that everyone with frailty or multiple or serious health conditions wants their life extended or perhaps protected from an infection such as COVID-19 that may end their life …’