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 do not want to die, I do not want to leave you. But I’m dying at home, ” remembers her widow, Michele Chilvers. Inflating the numbers who could die in a familiar environment, with loved ones by their side, has long been a goal of compassionate health care.
But some fear that a sharp rise in the number of deaths at home during the 18 months of the pandemic has covered a darker story and raised questions as to whether some ended their lives without the right support or even died unnecessarily due to lack of treatment.
In Terri’s case, her illness entered the last phase just when the home order was issued in England, leaving the couple struggling to obtain the necessary care to facilitate her death.
‘By the Thursday of her last week, I had not slept more than 30 minutes at a time for 10 days, and I asked [the NHS] for a night watchman to give me a break, ‘Chilvers said. ‘But because the restraint had just begun and everyone was worried about getting into other people, they said they would try, but they could not guarantee it. Eventually, someone was found, allowing Michele to recharge with a rare, uninterrupted night’s rest. But their time together was already over; the next day Terri dies.
The increase in the number of deaths at home was one of the most striking, but little noticed, phenomena of the pandemic.
Data published last week showed that the number of deaths in private homes in the week ended August 13 was 36.2 percent above the five-year average, which was 816 deaths too many. In nursing homes, they were a very modest 10.8 percent above the five-year average, while those in hospitals were 6 percent above the five-year average.
According to Sarah Scobie, who is leading the work at the Nuffield Trust brainstorming session, the increase in deaths at home has been evident since the early stages of the pandemic.
An analysis published by the Trust last September found that a third more people die at home than before the pandemic, even though deaths in hospitals and care homes have returned to the average, or below the average case, compared to the previous five year.
Scobie said numbers have dropped somewhat in recent months, but since the end of March, deaths at home have still averaged about 16 percent higher than before the pandemic. “In July, for example, more than 1,000 more people died than you expected,” she added.
Researchers say many patients were reluctant to go to the hospital during the Covid-19 crisis, when visitation restrictions were so strict and there was fear of contracting the virus. However, charities and campaign groups do not doubt that a shortage of resources is at least part of the story, with long-term limitations on the health care system financed by taxpayers, now exacerbated by the pressure to backlog in cases raised during the pandemic built up, to resolve.
Ruth Driscoll, head of policy and public affairs for the charity Marie Curie in England, said many people with a terminal illness would normally be admitted to a hospital or hospital. ‘But what happened during the pandemic was that people were clearly discouraged from getting into the hospital, and especially the government changed the requirements that people had to have their needs assessed in the hospital before being discharged into the community.
‘For this reason, many more people were sent home at the end of their lives with a terminal illness, and it was unfortunately a stress test for the system to support people dying at home.
A survey of caregivers conducted by the charity showed that “about 76 percent of them said that their loved one is not getting the necessary care and support. And 64 percent of them said that their loved one is not in control of the necessary pain. “The one was especially awful for us to hear,” Driscoll added.
The number of people in need of palliative care is expected to increase by 42 percent by 2040. “And there is currently no plan to meet the demand level,” she said.
The increase in deaths at home has also put a new spotlight on the exhaustion that health and social care have undergone more generally in recent years, said Prof Martin Vernon, a geriatrician in Greater Manchester and formerly a senior official in charge of caring for the elderly, proposed by NHS England.
Where people may have been kept in hospital at the end of their lives before, “the pressure is now on releasing them back into the community for home care. . . The thresholds for the dismissal of people with complex needs have decreased and community and social care has not been sufficiently expanded, ‘he added.
In some cases, lives may even have been lost unnecessarily, fighters believe. Dr Sonya Babu-Narayan, co-director of the British Heart Foundation and a consultant cardiologist, said more people died than usual during the pandemic of coronary heart disease in their home, rather than in hospital, and blamed to “the seismic disruption of NHS heart services”.
She feared that during the crisis “people with heart disease and their families did not have the same access to life care that they could support while dying at home”.
The Department of Health and Social Care said the NHS “kept services going throughout and prioritized the most urgent treatments, including urgent cancer care”.
“Covid-19 has left us with a huge backlog in treatment, and we support the NHS every time we tackle it,” he said.
Officials say the government has provided £ 6.6 billion so far this year to support the recovery of Covid-19, including £ 594 million for safe discharge from hospital and £ 1 billion to meet waiting lists and the backlog in treatment pack.
At the moment, Chilvers is sitting with sad reflection on painful last days, although her insistence on her wife’s care before the pandemic struck was ‘impeccable’.
“I felt like everything ended up in free fall when the closure started. It was not a peaceful death, it was very peaceful, and I’m worried she suffered, ‘she said.