In the last year an estimated 48,000 people in England experienced poor care in the last 3 months of their life (i), a new report from a coalition of charities today warns. This represents 10 per cent of people who died and is based on responses from relatives and carers collected by the Office of National Statistics (ONS).
On the Brink: The Future of End of Life Care highlights a range of widespread failures in care for dying people. It reveals that some people at the end of life are unable to get access to social care for help with everyday tasks such as washing and changing clothes, and many families are being left without professional advice on how to care for their dying relative. These factors can result in people being admitted to hospital as an emergency.
The report also includes distressing examples such as badly co-ordinated nursing and care services leading to mix ups with pain medication, and a daughter struggling to arrange a home visit from a nurse for her dying mother.
The report says that a lack of support for people at home is putting extra pressure on an already overstretched NHS, with people dying in hospital spending an average of 13 days there (ii). This means that people who die in hospital collectively could spend 2.9 million days in a hospital bed at the very end of their lives each year.(iii)
The report argues that shifting care out of hospitals will be better for people at the end of life and more cost effective, but warns that the right support needs to be in place at home and in other settings to enable this to happen.
The charities, including Macmillan Cancer Support, Hospice UK, Sue Ryder and Marie Curie, are urging the government to adopt the recommendations of the landmark independent review of choice at the end of life, which was published a year ago today. Recommendations in the review include access to 24/7 community nursing and a record of a person’s preferences for care at the end of life.
Speaking on behalf the coalition of charities, Lynda Thomas, Chief Executive of Macmillan Cancer Support, said:
“This is an astonishing and dismaying number of people being without the care and support they deserve in their final days. No relative or carer should be left feeling that their loved one had experienced poor care at such an important and precious time. It is unacceptable that lasting memories are being tainted by pain being poorly managed.
“People at the end of life should be given choice over important issues such as where they spend their final days, and sadly we know that this isn’t always the case. Too often we hear of people being marooned in hospital, because they are not getting the right care at home. Nobody wants to see this happen as it is an appalling situation for the individual and puts strain on the health service.”
“A review of choice at the end of life was published last year which set out in detail what needs to be done to improve end of life care. The government must now respond to this and commit to improvements in end of life care, without immediate action people will continue to die in distress.”
Terry Freeman, 76, was diagnosed with prostate cancer 3 years ago. His wife, Anne, who was his sole carer said: “Terry was taken into hospital one morning with uncontrollable pain, but all they really wanted to do was get the drugs under control and send him home. Terry was suddenly sent home, saying: “Well I don’t know what’s going on here. It seems they just want me out.”
“I was overwhelmed with trying to care for Terry by myself. I soon noticed the hospital had sent him home with the wrong medication. After trying repeatedly to reach someone at the hospital, in desperation I contacted Sue Ryder who worked with us to find the right care package which gave Terry the choice to be cared for at home for as long as possible.”
About the coalition of end of life charities:
We are a coalition of seven national charities who are campaigning together to call for better quality care and support for those approaching the end of their lives. The seven charities who produced the report are:
- Cicely Saunders Institute
- Hospice UK
- Macmillan Cancer Support
- Marie Cure
- Motor Neurone Disease Association
- National Council of Palliative Care
- Sue Ryder
i) Macmillan estimate of deaths between February 2015 and February 2016 based on Office for National Statistics. 2015. National Population Projections, 2014-based projections. http://www.ons.gov.uk/ons/rel/npp/national-population-projections/2014-based-projections/index.html (accessed January 2016); and 10% of the bereaved (all conditions) reporting that the overall, taking all services into account, they would rate the deceased care in the last three months of life as poor. Office for National Statistics. 2015.
National Survey of Bereaved People (VOICES), 2014. http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-407293 (accessed January 2016).
ii) National End of Life Care Intelligence Network. What we know now 2013, New information collated by the National End of Life Care Intelligence Network. November 2013.
iii) Macmillan estimate based on the deaths in England in 2014 in Hospitals (acute or community but not psychiatric) (Office for National Statistics. 2015 Deaths Registered in England and Wales, 2014. http://www.ons.gov.uk/ons/publications/re-reference-tables.html?edition=tcm%3A77-378961 accessed January 2016) and the average number of days people who die in hospital spend there (National End of Life Care Intelligence Network. What we know now 2013, New information collated by the National End of Life Care Intelligence Network. November 2013)