Three quarters of people who died at home during the pandemic did not get the health and social care they needed and nearly two thirds of carers said their loved one's pain wasn't fully managed.

The survey of bereaved carers was conducted by Marie Curie in partnership with data and insights provider Dynata. 

It showed that people didn't get all the help they needed with pain management (64%), personal care (61%) and out-of-hours support (65%) before they died at home. In addition, 78% shared that the pandemic meant they took on more emotional burdens when caring for their dying loved ones, and 76% of all respondents felt they were not offered all the care and support they needed as carers.

The findings were are released alongside the charity's inaugural Better End of Life report, a comprehensive look at dying, death and bereavement during the pandemic, produced by independent researchers at King's College London, Hull York Medical School, the University of Hull and the University of Cambridge.

Marie Curie is now calling for a long-term settlement to ensure end of life care is sustainably funded, with a particular emphasis on ensuring people dying at home, and their carers, always receive the support they need.

Better end of life report

The report found that during the pandemic, there was a sustained increase in the number of deaths at home. This was outside of pandemic peaks with 40% more people dying in private homes overall.

It says that the quality of palliative and end of life care across the UK was compromised due to it not being recognised as a frontline, essential service. This meant that palliative care teams struggled to access personal protective equipment (PPE), essential medicines and medical equipment.

"Many people will not be able to forget the deaths we have experienced this last year," said Matthew Reed, Chief Executive of Marie Curie. "It is vital that the Government, local health and social care leaders, and providers learn vital lessons from the pandemic. It's heart-breaking to see that people dying at home, and their carers, struggled behind closed doors.

"The Government must now ensure that end of life care is seen as essential and not a forgotten after-thought. How the dying spend their final days lives on in the memory of the people who love them. It is true that most people would choose to die at home but no one should be allowed to die in pain and without the essential care they need."

It is the first report in an annual series that will examine evidence on the current state of dying, death and bereavement across the four nations of the UK and propose a policy agenda aimed at helping to ensure that everyone has the best possible end of life experience.

This first research report from the programme explores the ongoing impact of the Covid-19 pandemic on dying, death and bereavement in the UK. It looks back at how 2020 provides valuable wider lessons for the longer-term future of palliative and end of life care and bereavement support in the UK by drawing on patient and carer perspectives, published literature, secondary analysis of research data, and analysis of publicly available data.

Highlights of the research include detailed analysis of mortality data for England, Scotland, Wales and Northern Ireland, focusing on the impact of Covid-19 on the place of death, extending this beyond the first pandemic peak and to the four nations of the UK. It also contains UK data from CovPall - a study of the role and response of palliative care and hospice services to the Covid-19 pandemic – which shows how frontline services struggled to access essential supplies that compromised the quality of care.

Professor Katherine Sleeman, from King's College London and lead researcher on the Better End of Life Report said: "For people living with serious illnesses and approaching the end of life, the Covid-19 pandemic has had profound impacts. Lockdown and social distancing have caused isolation and loneliness during a phase of life where relationships and human contact are of utmost importance. Although there has been an intense focus during the pandemic on the number of people who have died, the impact on the care needs of these people and those who have been bereaved has received little scrutiny.

"There was a sustained increase in deaths at home during the Covid-19 pandemic. However, without adequate support and care, dying at home may not be a positive experience. Our report highlights how primary care professionals managed increased volume and increased complexity of palliative care for people in the community.

"At the same time, hospices and palliative care teams made rapid innovations, adapting their services to support more people in their homes and care homes, as well educating and training wider health and social care professionals. However, these teams experienced shortages of essential medicines and equipment meaning they could not always provide the care that was needed."