Seniors Housing & Healthcare Trends

NEW YORK: The numbers dying in the community during the pandemic are now raising questions about support and treatment.

When Terri Chilvers was diagnosed with terminal cancer at the end of 2018, she had no doubt about where she wanted to end her days. “She said ‘I don’t want to die, I don’t want to leave you. But I’m dying at home’,” her widow, Michele Chilvers, recalled.

Swelling the numbers able to die in familiar surroundings, with loved ones at their side, has long been a goal of compassionate healthcare. But some fear that a sharp rise in the number of deaths at home during the 18 months of the pandemic is masking a bleaker story, raising questions about whether some have ended their lives without the right level of support or even died unnecessarily for lack of treatment.

In Terri’s case, her illness entered its last phase just as the stay-at-home order in England was issued, leaving the couple struggling to secure the care they needed to ease her passing.

“By the Thursday of her final week, I hadn’t slept more than 30 minutes at a time for 10 days and I asked [the NHS] for a night-sitter to give me some respite,” Chilvers said. “But because the lockdown had just started, and everyone was worried about coming into other people’s homes, they said they’d try but they couldn’t guarantee it.”

Eventually, someone was found, allowing Chilvers to recharge with a rare uninterrupted night’s sleep. But their time together was already running out; the following day Terri died.

The rise in the number dying at home has been one of the most striking, but little remarked, phenomena of the pandemic.

Data published last week showed that in the week ending August 13, the number of deaths in private homes was 36.2 per cent above the five-year average, amounting to 816 excess deaths. Within care homes they were a far more modest 10.8 per cent above the five-year average while those in hospitals were 6 per cent above the five-year average.

The rise in deaths at home has been evident since the early phase of the pandemic, according to Sarah Scobie, who is leading work at the Nuffield Trust think-tank to understand the reasons behind it.

An analysis published by the Trust last September found that a third more people were dying at home than before the pandemic even as deaths in hospitals and care homes had returned to, or fallen below, the average compared with the previous five years.

Scobie said the numbers had fallen somewhat in recent months, but since the end of March deaths at home had still been on average about 16 per cent higher than before the pandemic. “In July, for example, there were over 1,000 more people dying at home than you might have expected,” she said.

Researchers say many patients were reluctant to go into hospital at the height of the Covid-19 crisis, when visiting restrictions were so tight and there were fears of contracting the virus. However, charities and campaign groups are in no doubt that a shortage of resources is at least part of the story, with longstanding constraints on the taxpayer-funded health system now exacerbated by the pressure to clear a backlog of cases built up during the pandemic.

Ruth Driscoll, head of policy and public affairs for the charity Marie Curie in England, said many people with a terminal illness would in normal times have been admitted to a hospice or a hospital. “But what happened during the pandemic is, people were obviously discouraged from coming into hospital, and in particular the government changed the requirements for people to have their needs assessed in hospital before they were discharged into the community.”

She added: “For that reason, many more people were sent home at the end of their life with a terminal illness, and unfortunately it’s been a bit of a stress test for the system for supporting people who are dying at home.”

A survey of carers carried out by the charity showed “about 76 per cent of them said that their loved one didn’t get the care and support that they needed. And 64 per cent of them said that their loved one didn’t get the pain management that they needed. That one was particularly awful for us to hear,” Driscoll said.

The number of people needing palliative care is expected to rise by 42 per cent by 2040. “And there’s just no plan in place currently for meeting that level of demand,” she said.

The increase in deaths at home has also thrown a fresh spotlight on the attrition that health and social care more broadly have suffered in recent years, suggested Prof Martin Vernon, a geriatrician in Greater Manchester and formerly a senior official in charge of care for older people at NHS England.

Where people may have previously been kept in hospital at the end of their lives, “now the pressure is on to discharge them back into the community for care at home . . . The thresholds for discharging people with complex needs have gone down and community and social care has not been adequately expanded,” he said.

In some instances lives may even have been lost unnecessarily, campaigners believe. Dr Sonya Babu-Narayan, associate medical director at the British Heart Foundation and a consultant cardiologist, said more people than usual during the pandemic had died from coronary heart disease in their home rather than in hospital, blaming “the seismic disruption to NHS cardiac services”.

She feared that during the crisis “people with heart disease and their families have not had the same access to end-of-life care that could support them while coping with a death at home”.

The Department of Health and Social Care said the NHS “has kept services going throughout and prioritised the most urgent treatments, including urgent cancer care”.

“Covid-19 has left us with a huge treatment backlog and we are supporting the NHS at every turn to tackle this,” it said.

Officials said the government had provided £6.6bn so far this year to support the recovery from Covid, including £594m towards safe hospital discharge and £1bn to tackle waiting lists and the treatment backlog.

For now, Chilvers is left with sad reflections about painful final days, even though she insists her wife’s care, before the pandemic struck, had been “impeccable”.

“I felt everything went into freefall once the lockdown started. It was not a peaceful death, it was very unpeaceful, and I worry she suffered,” she said.