June 5, 2020
Care homes are centre stage as a result of the Covid-19 pandemic and staff in care homes (CHs) are now receiving the attention they deserve albeit under dreadful circumstances. Around 45% of all reported/suspected Clovid-19 deaths have occurred in this setting. As we move through this pandemic and beyond it will be important to consider how specialist palliative care and statutory services might offer more structured support to CHs in the future. Caring for frail older people who are living and dying in CHs is not new for CH staff in both care homes with on-site nurses and those relying on community nurses. In 2018, over a fifth of the UK population died in CHs. Many CH staff have actively pursued palliative care education such as Macmillan Foundations in Palliative Care for Care Homes, Gold Standards Framework, or Steps to Success. Despite acquiring a level of skill in this area, an unprecedented number of residents have died during this initial wave of Covid-19 on top of which CH staff have had to cope with reduced staffing, little external healthcare support, and doors closed to visitors. Where Covid-19 has struck, a quarter of staff at any one time have been ‘off-sick’ or ‘shielding’, one can start to understand the enormity of the situation. In one incident, agency staff were arranged but, on arrival, when told that some residents were Covid-19 positive, they were too afraid to take up the shift. Fear has been enormous and has required hugely sensitive leadership. There has been a huge financial burden on CHs as a result of Covid-19. For example, NHS hospitals were supplied with PPE but CHs had to buy it. Also, employing agency staff at vast expense and not being able to admit new people to the CH for a number of weeks has meant that many CHs, who were barely making ends meet before the pandemic, are in danger of closing their doors. If this happens it is likely to put pressure on already scant resources within specialist palliative care services and the community. We have been offering ‘online’ supportive reflection sessions in relation to death/dying for staff in a number of CHs affected by Covid-19. We have heard first-hand from staff caring for as many as five residents dying in as many days reaching to 14+ deaths over three weeks. The different symptomatology in residents who have died with Covid-19 baffled CH staff at the beginning of the pandemic; some died within a matter of 36hrs from being ‘well’ – others have had the more classic signs of extremely high temperatures, rigors and breathlessness. To deal with all of this alongside speaking with families unable to visit at such a distressing time has been traumatic and emotionally draining on the staff. Access to PPE appears to be improving along with access to end of life care medication such as morphine and midazolam, but the memories of residents who have died ‘gasping for breath’ over a matter of days despite medication with little access to oxygen/oxygen compressors lives on in the memory of many care support staff. There are ungrieved losses which if not well managed could potentially lead to burnout. It is important to recognise and acknowledge the skill of relationship-based care that many CH staff exercise in caring for frail older people with multiple co-morbidities at the end of life, the majority of whom have advanced dementia. Staff in CHs do not have a strong multi-disciplinary team as part of their service like hospices do – the majority of CHs (65+%) do not even have on-site nurses. Some care workers who haven’t had the support of on-site nurses have voiced considerable frustration and a sense of moral outrage at what they perceive as inadequate support from healthcare services – for example being unable to access on-site symptom assessment from doctors and nurses when residents are dying in pain and distress. This is not intended to blame individual healthcare workers who we recognise have faced their own institutionally organised pressures. Rather it is to highlight the distress we’ve heard in some care homes and the inefficiencies of current structures and processes. Many hospices and their community palliative care teams, if they were not already involved, are becoming more active offering CHs a 24/7 telephone line for clinical consultation and starting ECHO sessions as a result of Covid-19 pandemic. Heather Richardson CEO, St Christopher’s Hospice has found that the current pandemic has been the catalyst to re-build relationships with their local CHs. She says that clinical staff at the hospice have a renewed respect for the work in CHs and indeed for all that staff there are having to handle. Other hospices who were using the ECHO methodology to promote shared learning and create communities of practice with CHs pre-Covid, are using this platform to maintain relationships and develop new links with even more CHs. So what does the future hold? We believe the effect of multiple factors that CH staff have faced during this pandemic could have a long-lasting effect on the workforce and will require sensitive and structured support in the months to come. The role of CHs as de-facto hospices must be acknowledged. CHs should rightly be applauded as the other half of the NHS ‘rainbow’. Thankfully, the initial wave of Covid-19 appears to be receding. We hope that any further wave will be met with a coordinated and structured response from specialist palliative care teams and the NHS so that in future we can ‘be present’ to support and work alongside caring for frail older adults living and dying in care homes.