Research led by Lancaster University has revealed that the exceptional circumstances early in the COVID-19 pandemic led to distressing experiences of death and dying in care homes.
Not only did care homes suffer significantly high death rates amongst residents , but this was compounded by the impact of social distancing restrictions on family visiting and external support from palliative care teams for some care home residents dying in the early months of the pandemic.
The study was led by Lancaster Professor Nancy Preston of the International Observatory on End-of-Life Care with colleagues from Newcastle University and the University of Sheffield.
The research explored the impact on care homes of the early waves of the pandemic between Autumn 2020 and Summer 2021. Interviews were conducted with 16 UK care home staff , three residents , five family members and health service staff working with ten care homes , exploring their experiences of death and dying.
Experiences of death and dying in care homes were particularly distressing for staff and families at this time for a number of reasons.
Preparing for large scale deaths
The findings suggest that care home staff found the prospect of preparing for, and managing a large number of deaths particularly difficult, with one care home manager telling researchers that "Just before lockdown we had a nurse came to the home and said to us, 'Right you need to be prepared to hold bodies in the care home. Do you have any cold bedrooms where you can hold bodies?' … and I think that kind of hit us."
Policing family visiting due to social distancing restrictions
Care home staff also found it very distressing enforcing strict social distancing restrictions on family visits when a care home resident was dying, which often brought them into conflict with their personal and professional instincts for supporting residents and families at these times.
One care home worker said: "It's just an awful position to be in because who are we to say they can't say their goodbyes and for how long. That's the bit that I find difficult."
Distress surrounding deaths for all involved
Social distancing regulations were clearly also very distressing for families. As well as time restrictions on visits, they also had to choose a single family member to visit, which was difficult for all involved, and could cause family conflict. The findings suggest that the impact of these factors continued to affect families some months after their bereavement, with one telling researchers: "To end his life without having anyone there with him that he knows. That is just a terrible way to go and I don't think we'll ever forgive that really."
Staff also found resident deaths extremely distressing, particularly witnessing the rapid decline of residents whom they had often known and worked with for months or years. They reported not being able to offer the type of end-of-life care that they would wish to, and some felt they had limited external support in managing end-of-life care.
Professor Nancy Preston said: "We don't yet know the long-term impact of this distress for care home staff and families, but planning for future crises should have clear policies for end-of-life care, including prioritising family visiting and ensuring consistent access to external support services including specialist palliative care."
The study was funded by Health Data Research UK (HDRUK), the National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI).
