COVID-19 and death at home

Since the beginning of the COVID-19 pandemic in the United Kingdom, it is likely that in excess of 150,000 deaths can be directly or indirectly attributed to the novel coronavirus that first struck in March 2020. This toll equates to around one in every 300 people aged over 20 years based on the 2019 population estimates of 67 million overall. ¹

Overwhelming, those deaths have been concentrated at older age groups with particular mortality among 60–69 year olds and especially those over 70. That many of the victims have been in the later part of the natural human lifespan or nearing end of life has led some to conclude that the severity of the measures put in place to control the virus could not be justified by the collateral damage to the economy, to the provision of other essential health services or to mental health, especially of the young.

As the success of the vaccine programme rollout heralds the potential return to some measure of normal life, these arguments continue and will no doubt resurface should a further pandemic wave occur consequent on the dire situation of continuing viral spread and poor access to vaccines in much of the developing world.

One aspect of the events of the past year that has received less attention has been the impact of the widespread experience of death that has touched so many and which is in contrast to the experience of any generation since the end of World War II and the advent of scientific medicine. Of particular note has been the extent to which momentum seems to have been added to an underlying trend towards death at home rather than in an institutional care or clinical setting; notwithstanding the thousands of COVID victims who have died in hospitals or the scandal of the attrition in Care Homes consequent on the reckless transfer of infected patients.

Throughout the post-war period, there had, until recently, been an established pattern of a majority of deaths occurring in formal institutional settings of one kind or another in contrast to the situation that prevailed before the appearance of the welfare state. However, in recent years a combination of changing public expectations together with concern about the disruptive and unproductive impact of multiple emergency admissions, not least on the quality of life of the dying, has led to a change of policy focus and increasingly of clinical and social practice. ²

Survey data suggest that the majority of people would prefer to die at home with few wishing to die in hospitals. In contrast, until recently many relatives have been less than supportive of these wishes, perhaps because of their concern about the adequacy of support from community and primary healthcare services. The NHS Long Term Plan includes a commitment to roll out personalised care planning for everyone identified as being in their last year of life to reduce unnecessary admissions and to ensure that more people are able to die with compassion in the place of their choice. ² It looks as if these aspirations may be about to experience a boost as a result of the experience of the pandemic.

According to a recent report by the Nuffield Trust, the proportion of people dying in their usual place of residence has increased substantially from 35% in 2004 to 47% in 2019 with a sharp increase during the pandemic reaching a majority of 52% for the first time while deaths in hospitals and care homes fell. While part of this may have come about because of decisions being taken based on the availability of intensive care and the application of frailty scores to decide on the appropriateness of admission for patients with COVID-19, the interesting question is whether this trend will now be sustained and to what extent patients are able to elect to stay at home or to return home from hospital to die.

The marked regional variation in the proportion of people dying at their usual place of residence, with London showing the lowest rates, could be a reflection of the comparative state and resilience of primary and community care, which will be a key factor in delivering on this desirable goal.

The recent death of Prince Philip, the Duke of Edinburgh, who spent some weeks of his last year in hospital but returned home to Windsor Castle for his final days may prove to be an iconic moment in the story of these troubled times. It would be in keeping with the life story of this remarkable man, who proved so willing to play second fiddle to his wife in life, if his legacy was to include his being a key ‘influencer’ in the age of social media in the manner of his death.