This article is part of our Local Week series, a collection of articles focusing on the challenges facing communities as they confront the fallout of the COVID-19 pandemic. You can find the other articles in the series on our Local Week page.
People are infected with and dying from COVID-19 in three settings. In hospitals. In residential care facilities and other non-medical institutions such as prisons. And at home. With health systems under great strain, they are also more likely to die from other causes. To date, no serious attempt has been made to understand and prevent home deaths.
The World Health Organization advises that “all laboratory confirmed cases be isolated and cared for in a health care facility.”
Given pressure on health systems, it accepts that not all patients can be admitted to hospitals, advising that patients with “mild illness and no risk factors” should be “isolated in non-traditional facilities, such as repurposed hotels, stadiums or gymnasiums.” If necessary, however, it recommends that patients should be isolated at home.
This guidance is based on four implicit assumptions drawn from experiences early in the pandemic:
- Most infected people are in contact with the health system unless their disease is very mild or asymptomatic.
- Most severely ill patients are in hospital.
- When managing mild or moderate cases outside hospital, prevention is the primary objective – WHO says that “isolation to contain/mitigate virus transmission should be prioritized.”
- Patients or family members can get help if they need it, by monitoring symptoms and “return[ing] to a designated COVID-19 hospital if they develop any worsening of illness.”
WHO illustrates these assumptions with pyramids for the severity of the disease and for resource requirements. 80% of people have mild or moderate symptoms. They need little medical support. 20% of people have a severe or critical illness and need intensive inpatient care.
Hidden Deaths at Home
These assumptions no longer match what is happening in the real world:
- Most infected people have not been tested or do not know they are infected. A large, but unknown, proportion have not had any contact with the health system.
- People at home may have severe symptoms and many are dying.
- There is a substantial unmet need for healthcare in people’s homes.
The evidence to back up these assertions is fragmented but increasingly compelling. In Italy, for example, the government’s working assumption is that only 10% of infections have been detected. Certainly, many infections have not been reported, as the country’s crude case fatality rate is currently at an implausible 25%. In New York, early studies show that 15% of people have been infected, well above the number of confirmed cases.
Deaths are also being missed. The Economist sampled municipalities in Lombardy and found that excess mortality is more than double the confirmed number of deaths. In Spain and France, excess mortality was 60% higher. In the UK, mortality was 60% higher than for the corresponding period in 2019, with the number of excess deaths 76% higher than the number of officially registered COVID-19-related deaths.
In the United States, autopsies in a single county in California belatedly detected three home deaths – the first from February 6, three weeks before the first death was officially recorded. The first American to die of the disease was a 57-year-old who believed she had recovered from a bout of flu before dying suddenly. One New York hospital reported a sevenfold increase in strokes among patients below the age of 50. Two patients had delayed calling an ambulance. All tested positive for coronavirus.
Many people are dying in care homes and in other residential facilities. Analysis in five European countries suggests that “care home residents have so far accounted for between 42% and 57% of all deaths related to COVID-19.” In Madrid, 3,000 people died in care homes in March, double the normal rate. Prisons have a growing number of both reported and undetected deaths.
But a significant proportion of COVID-19’s hidden deaths are at home. In the UK, deaths at home have grown rapidly (see chart below) and few deaths have COVID-19 on the death certificate. In New York City, home deaths are being undercounted, but emergency calls because of cardiac arrests have quadrupled with fatalities increasing by a factor of more than six. In Massachusetts, the number of home deaths in March 2020 was 32% higher than the 20-year average for the month.
Understanding Hidden Home Deaths
We know very little about deaths at home.
In part, this is because “the virus acts like no microbe humanity has ever seen.” The picture of how COVID-19 kills is more complex and poorly understood than many realise. As well as the classic picture of a critically ill patient needing ventilation, there is growing evidence of impacts on the heart and cardiovascular system, on the liver and kidney, and on the brain and central nervous system. As a result, seriously ill people are slipping through.
But we know even less about where COVID-19 kills and why. Clusters of infections are patiently being traced through communities, but we have found no equivalent collection of case histories of people who have died or become seriously ill from COVID-19 when at home. Instead, we must rely on scattered media reports to gain some sense of what is happening.
In Michigan, Gary Fowler, 56, had been sent home from the emergency room three times. He died on a recliner at home. Alessandro Bertuletti had been prescribed a painkiller and a course of antibiotics. His wife finally persuaded an ambulance to come. He died five minutes before it arrived. Jarrod Sockwell died in his bedroom in Brooklyn.
A striking number of health and care workers have died at home. The British nurse, John Alagos, 23, died after a 12-hour night shift. Elsie Sazuze, a 44-year old care worker originally from Malawi, caught COVID-19 in a British care home and died two days after she was sent home from work. In Montreal, Victoria Salvan, an orderly, was sent home with a fever and found dead two-days later.
These reports, of course, tend to include only those who had been diagnosed with COVID-19, so they only tell part of the story. But we surmise that people are dying outside hospitals for one of the following reasons.
- As they get sicker, people do not seek hospital care when they need it. One patient in his mid-50s describes being too weak and confused to know what to do. The virus itself seems to be causing neurological complications that may weaken decision making.
- They are sicker than they realise or have atypical symptoms. One report suggests that some COVID-19 patients have critically low blood oxygen levels without showing obvious signs of distress.
- They seek care but do not get it, either because health systems are overwhelmed or due to inequities in healthcare provision.
- They do not want ventilation or other aggressive medical interventions that have a high risk of failure and often lead to lifelong disability. In countries where doctors are calling elderly patients to record their treatment preferences, this could lead to some believing they “will not be welcome [in an] intensive care unit.”
- They are afraid to go to hospital or do not want to leave family members who will be unable to visit them.
- They do not get the healthcare they need for other illnesses, which makes them more likely to die from non-COVID causes (18% of Italy’s excess mortality may be from non-COVID causes).
- They are dehydrated and malnourished due to the severity of their symptoms (incessant coughing, for example, or diarrhoea) or because their sickness makes it impossible for them to buy food.
- Illness, the lockdown, or economic factors leave them unable to access food or other care. Even in a rich country such as the United Kingdom, 1.5 million people report having gone a day without food in the first three weeks of lockdown.
Learning from the Past
Some may find it implausible that such large numbers of people can die unnoticed. It is not. More than 40,000 Italians were reported as infected before mayors of small towns rang the alarm about unreported deaths. In just one commune, more than 90 deaths had been missed – three times the official toll.
Hidden deaths have been seen during other emergencies. In 2003, a heatwave hit France. In Paris, 15,000 people died, most of them old, of what Richard C. Keller has dubbed “fatal isolation.” According to Keller, old people were at risk not just because they lacked physical defences against the heat, but because they did not have the social networks they needed to survive.
“Many of the heat wave’s elderly victims died alone from severe dehydration in tiny, boiling hot apartments,” he has argued. “Neighbors were alerted to their deaths only after a horrifying stench emerged from behind their locked doors.”
Past pandemics also show the danger of concentrating only on prevention and allowing care to be squeezed out. In 2000, we called for a pivot to treatment for the millions of people who were by then living with AIDS. In a special issue of Science magazine for the 13th International AIDS conference, we quoted the pioneering Ugandan AIDS doctor, Peter Mugyenyi: “The medicines are where the problem is not, and the problem is where the medicines are not.”
“Old people were at risk not just because they lacked physical defences […] but because they did not have the social networks they needed to survive.”
HIV/AIDS had spread globally but sophisticated medical care was the preserve of more educated and wealthy patients in rich countries. The world’s poor had only been given prevention. They were asked to practice safe sex but could not find treatment if they became sick. A global effort was needed to provide “care tailored for the poor and marginalized, where treatments are chosen to transcend, as far as possible, the limitations of delivery systems.”
We now need the same shift for COVID-19. The pandemic has triggered a surge of collective learning by critical care doctors. Belatedly, efforts are now underway to raise standards in care homes and other residential settings. But there is no equivalent effort for people who are sick in their communities. It is all quiet on the home front.
We are aware of no government that has an action plan for stopping people from dying at home. Innovations are piecemeal. For example, a pilot program in Cleveland, Ohio equips moderately sick people with a remote sensor that measures their oxygen levels. After they are sent home from the emergency room, doctors are alerted if they need urgent treatment and can call them back to hospital. The sensors can be bought for less than $50, and there may be a role for them as part of the home care response.
Technological fixes of this kind are laudable but will be hard to scale up. More than 1.5 million people are now reported to have a mild or moderate illness and the true figure is likely to be at least an order of magnitude higher. The pandemic will continue to grow rapidly and to spread in countries where the weakness of health systems means that most patients can only be treated at home or in their communities.
“More than 1.5 million people are now reported to have a mild or moderate illness and the true figure is likely to be at least an order of magnitude higher.”
We therefore need an urgent and ambitious effort to understand why people are dying at home and how these deaths can be prevented. As with HIV/AIDS, a hospital-centric approach must be supplemented by a community model that addresses all layers of WHO’s pyramid, not just those who are visibly sick in intensive care beds.
This mission should be guided by medical science but must be undertaken by an alliance of health workers, social workers, teachers, voluntary groups, local government officials, faith groups, small businesses, and other grassroots networks. It must address health needs, but also the need for food, income, and the other necessities of life.
Local leadership is essential, with funding, guidance, and support flowing from regional, national, and global levels. And the approach must empower people themselves, so that family members know what signals to watch for when a relative is sick, neighbours look out for neighbours, and systematic efforts are made to track and trace people who are in trouble and alone.
A People’s Science
The urgency of a more people and community-centred approach will grow every day.
As the pandemic spreads beyond high-income settings to the world’s poorer countries, a focus on care and prevention in communities and in homes will become ever more important. Most developing countries are either in the earliest stages of their epidemic or may have large numbers of hidden cases as most infected people shelter at home.
As with HIV/AIDS, COVID-19 stigma is a growing problem, deterring people from seeking care. Hospitals and health centres in many low-income countries struggle to cope with their populations’ health needs during normal times. During a pandemic, it will be impossible for them to provide intensive care to more than a small proportion of those infected, and most of those in need of care will inevitably have to be treated at home or isolated in non-healthcare facilities in their communities.
But poorer countries – especially those with recent experience of epidemics – have much to teach the world. The horror of the 2014 Ebola outbreak forced the rapid evolution of what Paul Richards calls a people’s science. “Communities had begun to think like epidemiologists,” he writes, “and epidemiologists (in providing timely and relevant advice to local agents) had begun to think like communities.”
What would a people’s science for COVID-19 focus on?
First, investigating how people get infected in their communities and what changes with different types of restriction on freedom of movement and association. Second, exploring what happens when people get sick or die, especially when this happens outside of hospitals. Third, understanding how people seek and get help, whether for their health needs or for food or essential needs. Fourth, mapping the ‘backbone’ of the response to COVID-19 in communities (including unusual suspects such as funeral directors). And finally, understanding what knowledge, resources, and technologies are needed to make community resilience stronger, and how to deliver these in ways that are likely to be accepted.
Here’s an eight-point action plan for bringing hidden deaths out into the open and preventing as many of them as we possibly can:
1. Instead of seeing people with COVID-19 predominantly as disease vectors to be isolated, recognise their right to healthcare in their homes and communities.
2. Revise and disseminate WHO’s guidelines on home care for COVID-19 patients, drawing on emerging models such as the guidance issued by the UK’s National Institute for Clinical Excellence (NICE) or the community management systems being tested in the US.
3. Ask UNAIDS to share its experience treating HIV/AIDS and empowering people living with the virus to the COVID-19 pandemic and apply it to home and community settings.
4. Make home and community care for COVID-19 patients a priority in the WHO R&D blueprint and invest in a rapid programme of epidemiological and ethnographic research in community settings.
5. Agree national action plans for caring for COVID-19 in the community, with models appropriate for high, middle, and low-income settings that balance isolation with effective treatment.
6. Ask mayors, local councillors, traditional leaders, and community activists to lead this effort and provide the resources, training, and protection for them to be effective.
7. Build a global platform to monitor excess mortality data, building on existing initiatives such as Euro Momo.
8. As soon as data are available, set a target for reducing mortality from COVID-19 at home and in communities.