End of life fast track care is a postcode lottery which leaves many unable to fulfil their dying wishes

Categories: Care, Featured, and Research.

A new report by Marie Curie has revealed that on the eve of the Covid-19 pandemic, almost half of Clinical Commissioning Groups (CCGs)in England were not meeting the 48-hour standard for delivering Fast Track Continuing Healthcare (CHC) packages set out in the National Framework.

Data Marie Curie sourced from CCGs through Freedom of Information (FOI) requests has revealed that in some parts of the country, people who are dying can be left waiting in hospital for more than a week before care is put in place to allow them to leave.

Fast Track CHC is crucial to ensuring seriously ill and dying people receive the appropriate support they need to enable them to leave or prevent admission to hospital. This is often a key factor that allows people to die in the place they choose.

Delays in putting Fast Track CHC in place can lead to people dying in hospital before a package of care is put in place, which can cause significant distress for those at the end of their lives and their loved ones. More than two-thirds of people wish to die at home, but around half of people ultimately die in hospital.

Only 46% of respondent CCGs could meet the 48-hour deadline for getting fast track care in place to enable dying people to be cared for outside of hospital.

It’s clear that end of life care in England remains a postcode lottery – in some areas for example, it took on average more than 10 days to deliver a Fast Track CHC package from the point it was applied for. This inconsistent delivery means that too many people were at risk of being denied their wish to die at home at the end of their lives.

Mark Jackson, Policy Manager at Marie Curie:

“Behind every statistic in this report is a family who’s loved one faced long delays before they could leave hospital at the end of their life, or who couldn’t leave at all. No-one wants to be stuck in hospital at an already difficult time, if they don’t want or need to be there. While hospitals offer excellent care, they are often not the best place for someone to be cared for at the end of their lives.

“It’s essential that CCGs take steps to improve their performance at delivering Fast Track CHC, in order to ensure that people can have their end of life wishes met, and grieving loved ones are not left with a legacy of complicated grief and regret.”

Julie Pearce, Chief Nurse, Executive Director of Caring Services at Marie Curie said:

“While measures introduced during the Covid-19 pandemic have been welcomed and proved more effective in facilitating timely discharge of patients from hospital to home-based care & support, many of these are temporary measures – we cannot go back to the situation revealed in this report, where too many CCGs in England were failing to meet the standards in the National Framework and had little incentive to improve their performance.

“With 6 million people expected to die in the next decade and 75% of them likely to need end of life care, now is the time to address these issues and put Fast Track CHC on a sustainable footing of better performance over the long-term so that peoples’ experiences at end of life reflects their wishes about being cared for at home. “

Gaby’s father John died at the age of 89 from vascular dementia. Gaby speaks about how the local health and social care agencies failed to provide the care her dad needed in the final weeks of his life:

Dad went into hospital 11 weeks before he died, with a bleed unrelated to dementia. He was extremely unwell and totally confused and distressed. He had surgery on the Tuesday, and they insisted on discharging him on the Friday, with a catheter, despite our protestations. We were saying that we couldn’t cope with him with a catheter when he doesn’t even understand what it is. It just wasn’t safe.

“He ended up getting taken back to hospital late the next day after he found scissors and cut off his catheter during the night. The nursing staff in hospital couldn’t cope with him either because he roamed in the night he was confused and tried to pull out his catheter.

“Nobody mentioned CHC. The only type of care package that was even mooted was a ten-minute get him up in the morning and a ten-minute put him to bed at night. Which would have been useless. We were told there were no night sitters in the area. It was impossible to get any real help.”

About Marie Curie
Marie Curie Nurses, doctors and hospice staff are on the frontline of the Coronavirus crisis. Every day they are helping to support dying people to be cared for away from hospital when every bit of available capacity is needed to care for people diagnosed with the virus, and we are also providing care to those who have tested positive for coronavirus in our hospices and who are suspected as having the virus at home across the UK. Marie Curie organised a National Day of Reflection on 23 March 2021 to reflect and remember those who have died during in the pandemic from Covid-19 and other causes.

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