COVID-19: End of Life Care Concerns After Rise in Home Deaths

Siobhan Harris

Disclosures

October 09, 2020

There's been a significant rise in the number of people dying at home since the COVID-19 pandemic started, and that trend looks set to continue.

The reason for the increase in excess deaths is varied and hard to disentangle, but it's raised concerns that people are dying at home without the palliative care and support they need.

Latest figures from the Office for National Statistics reveal the number of excess deaths - not linked to COVID-19 - in private homes in England and Wales since the start of the pandemic has passed 25,000.

Excess Deaths

There were 25,183 non-COVID excess deaths in homes in England and Wales registered between March 7 and September 25.

The total number of excess deaths in private homes registered during this period was 27,648, including 2465 coronavirus deaths.

Any death involving COVID-19 is counted as an excess death, because the virus did not exist before this year.

Professor Sir David Spiegelhalter, chairman of the Winton Centre for Risk and Evidence Communication, University of Cambridge, commented via the Science Media Centre: "Crucially, there is still absolutely no sign of any reduction in the 30% increase in deaths occurring at home. If this is to be a long-term feature of deaths in this country, we need to be confident that appropriate end of life care is being made available."

Palliative Care 

That's a concern shared by the charity Marie Curie, which provides palliative care through its hospices and nurses.

Its UK Medical Director Dr Sarah Holmes told Medscape UK, "We already knew, before the pandemic, that 1 in 4 people miss out on the care they need at the end of their lives. Our concern is now that even more people will be dying at home without the palliative care and support they need and deserve, in particular over the coming winter as we expect the number of deaths to potentially rise again."

Kevin McConway emeritus professor of applied statistics at The Open University said: "This isn’t a new feature. Deaths at home have been running at somewhere between 600 and 900 above the 5-year average level since the end of May. Even right back at the peak of the pandemic in late March and April, the number of excess deaths at home was high, reaching 2000 some weeks. But again, the majority of those deaths were not directly from COVID-19," he added.

This suggests that some people who would otherwise have died in other settings like hospitals and care homes are instead dying at home.

Commentators have speculated on a variety of explanations for this trend, from fear of catching the virus to making deliberate choices about where to die. But it's difficult to quantify.

Fear and Delay 

Especially at the start of the pandemic many people were too scared to visit hospitals in case they caught COVID-19. There's evidence still that people remain too frightened to go to hospital.

"What I've seen is some people are afraid of going into hospital as the messaging has been very clear, we need to protect the NHS. Visiting restrictions may also put people off going in, as well as the fear of catching COVID itself," says Dr Holmes.

Some people may think their symptoms aren't serious enough and delay presenting for conditions like heart attack and stroke as they don't want to burden the NHS, and may consequently die at home.

It could also be a factor that some people weren't able to get routine investigations to help diagnose their conditions, and consequently became ill and died.

The mental burden of strict lockdowns for elderly people and those shielding because of health conditions can't be underplayed either.

Decisions on Care 

There's anecdotal evidence some people are deciding not to put their elderly relatives in a care home setting because they are frightened of them contracting COVID-19.

It may be because of changed economic circumstances, they can't afford a private care home and opt for home care instead.

Another possible explanation is that with so many people working from home, elderly or sick people have had relatives on hand to care for them, which wasn't the case before.

"That may well be one of the reasons. Normally people are out in an office, now they are working from home. It may be possible to juggle support of family and friends," adds Dr Holmes.

Hospitals, care homes, and hospices have all had visiting restrictions throughout the pandemic. This may have prompted relatives and those who were sick and elderly to decide to remain at home to ensure they retained contact with their loved ones.

Positive Outcome?

Anecdotally, when asked, most people say they would choose to die at home, rather than in hospital or in a care home. So this may be an unintended positive consequence of the pandemic.

A distinction has to be drawn between people who realise they are at the end of their lives and people for whom death is unexpected and a potential result of a delay in a medical treatment.

"This may be an overall positive development, since most people would prefer to die at home than in hospital but it depends on the care and support the family are receiving," said Prof Spiegelhalter.

"I believe most people would wish to die at home, given the choice, so maybe this increase in deaths at home is a good thing. But maybe it is an unintended and unfortunate side-effect of changes in health service provision because of the pandemic," speculates Prof McConway.

Dr Holmes says: "Dying at home can be a positive sign as long as people are getting the support they need and that's our concern. We need to properly fund palliative care. End of life care relies on charities like Marie Curie to provide support. The NHS doesn't fund all of the palliative care that people need, it's propped up by charities like ourselves that rely on people fundraising for us. We absolutely shouldn’t have to rely on people doing cake sales and marathons to fund end of life care in this country."

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