In summer 2020, both of Maureen Anderson’s parents died, within four weeks of each other, in her sister’s living room. Maureen and her siblings were unprepared for the realities of caring for their parents at home at end of life. They were not even warned that their Mum was dying when she was discharged from hospital, only discovering this when Maureen read that she had ‘days to one week to live’ in her medical notes. Maureen’s Mum was sent home without any end of life medication, incontinence pads or food. These incontinence pads were only provided the day after her death.
Sadly, Maureen is not alone and there are many more stories of people dying at home without the support they and their loved ones needed. Hospice UK estimate that almost 67,000 people have died at home without the right end of life care since the start of the pandemic.
The numbers of people dying at home have been increasing for some time, but this trend has been accelerated by the pandemic. In February 2022, the UK reached the milestone of 100,000 excess deaths in private homes since the beginning of the pandemic, compared to the five-year average. What is particularly stark is that the numbers of people dying at home have remained high even through the peaks and troughs of the pandemic. In 2022 so far, around 4,000 people have died at home across the UK every week. These deaths are primarily from conditions other than COVID-19, with only 9-12 per cent directly attributed to the virus.
Whilst surveys show that many people prefer to die at home, we believe that the pandemic has removed any sense of choice. The surge in deaths at home may have been driven by fear of COVID-19 infection, not being able to see friends and family, or apprehension about overwhelming the NHS in an inpatient setting. It is clear that the surge in deaths at home and its causes need to be investigated.
Hospice UK is concerned that the health and care system is not currently equipped to support such high numbers of people dying at home and that, as a result, families of those who are dying have had to take on more caring responsibilities, frontline health and care workers have been under unimaginable pressure and many thousands of people may have died at home without the pain relief, symptom management and emotional and practical support they need.
Millions of us have lost loves ones during the pandemic and this national grief has made many more of us willing to talk about death and dying, a typically taboo subject, than ever before. Hospice UK’s Dying Matters campaign, which aims to open up conversations about death, dying and grief, is calling on the public to use their voices and recent experiences to campaign for better palliative and end of life care, particularly for those dying at home.
We are calling for the COVID-19 Public Inquiry to investigate deaths at home during the pandemic to find out what happened to the people dying behind closed doors – in the same way that the situation in hospitals and care homes will be covered. We must ensure lessons are learned from the pandemic and people receive better care at home in the future.
We know that many thousands of hardworking and compassionate health and care staff want to do the very best for patients and families. But they need the right support – and so we are also calling for government investment in palliative and end of life care delivered in the community, better training in palliative and end of life care for all health and care staff working across the system and improved integration of care between providers to meet the needs of communities.
To learn more about Dying Matters and join the thousands of people campaigning for better palliative and end of life care for all, go to https://www.hospiceuk.org/our-campaigns/dying-matters.
