Good palliative care alleviates suffering and improves quality of life for people with serious illness. It can also help bereaved families cope with the loss of a loved one. However, providing palliative care in care homes became very challenging during the pandemic.
How care home staff, external healthcare services, and family members were able to support and provide care for residents changed almost overnight. There were restrictions on family members visiting residents, care home staff needed to wear personal protective equipment (PPE) making communication with residents difficult, and care providers were coping with high levels of stress and uncertainty. Many care homes struggled to get enough PPE for their staff, as NHS settings were prioritised, and it was very difficult to access Covid-19 testing kits.
While the media and policymakers focused on infection control and higher death rates within care home, little attention was given to how the pandemic affected the provision of palliative and end of life care in care homes and how staff responded.
The CovPall Care Homes study was set up by palliative and end of life care researchers at King’s College London and NIHR ARC South London to understand how care homes in England responded. The aims were to:
The research team, which we were part of, did this using an online survey with responses from 107 care homes followed by 27 interviews with senior staff in care homes.
Care home staff told us that relationship-centred care is crucial in providing high-quality palliative and end of life care in care homes. This means creating a sense of home and nurturing care, with close bonds between staff and residents and their families. The pandemic meant it was more difficult for care home staff to deliver this type of care.
Whether or not care homes could deliver relationship-centred care during the pandemic depended on ‘pillars’ of care being in place. These pillars were:
We found that these pillars were not consistently in place across care homes. For example, care homes experienced poor connections with external health services, faulty or outdated digital equipment and WiFi, and shortages of staff due to sickness, isolation, shielding, and resourcing issues.
During the pandemic, care home staff played an essential role in the delivery of high-quality palliative and end of life care. Yet staff felt their role in the wider health and social care system was often ignored and undervalued by the government, public, and media.
Staff got really tired because they were doing really long shifts and not wanting to leave staff at the care home, because they were short of staff as well . . . And it was horrendous. It was distressing. Even though the work they’ve done is unbelievable, I don’t think the government or society has particularly placed any massive accolade on the work that the care home staff have done … they don’t feel that valued, and I think that contributes to poor mental health. They’ve done a brilliant job
We discussed our findings with care home staff, family carers, academics, policy experts, and patient and public involvement (PPI) members to develop a policy briefing. Within this, we make policy recommendations across five areas below.
By 2040 care homes are expected to become the most common place of death for people in England and Wales. The pandemic can be thought of as a ‘stress test’ for the delivery of palliative and end of life care in care homes. Our findings and recommendations are important to ensure delivery of care in the future that meets this growing need.
Care home staff felt that they were viewed as unskilled and that care homes were simply seen as a place to which Covid-positive patients could be discharged. A key theme from our discussions was the need to change the narrative about what care homes and their staff do. This means, for example, shining a light on the skilled contributions that care home staff make in the delivery of high-quality palliative and end of life care.
We worked with our PPI group and expert panel (mostly family carers with experience of care homes) to produce a short, animated film based on our study findings, titled ‘Care Home Staff are Heroes Too’. It highlights the invaluable role that care homes and their staff played during the Covid-19 pandemic.