Care homes have taken centre stage as a result of the Covid-19 pandemic.
To mark Carers’ Week, University of Edinburgh Research Fellows Dr Jo Hockley and Dr Julie Watson, and Anne Rees, Care Home Manager at Elder Homes in Edinburgh, write about staff in care homes receiving the attention they deserve, albeit under dreadful circumstances.
Around 45 per cent of all reported/suspected Clovid-19 deaths have occurred in care homes. 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 care homes in the future.
Caring for frail older people who are living and dying in care homes is not new for 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 care homes. Many staff have actively pursued palliative care education such as Macmillan Foundations in Palliative Care for Care Homes, Gold Standards Framework, or Steps to Success. Yet 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 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 as a result of Covid-19. For example, NHS hospitals were supplied with PPE but care homes had to buy it. Also, employing agency staff at vast expense and not being able to admit new people for a number of weeks has meant that many care homes 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 and dying for staff in a number of care homes 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 more than 14 deaths over three weeks.
The different symptomatology in residents who have died with Covid-19 baffled 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 or 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 care home 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 care homes do not have a strong multi-disciplinary team as part of their service like hospices do – the majority (over 65 per cent) 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 care homes a 24/7 telephone line for clinical consultation and starting ECHO sessions as a result of the pandemic.
Heather Richardson, CEO of St Christopher’s Hospice in south London has found that the current pandemic has been the catalyst to re-build relationships with local care homes. She says that clinical staff at the hospice have a renewed respect for the work in care homes 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 care homes pre-Covid, are using this platform to maintain relationships and develop new links with even more of them.
So what does the future hold? We believe the effect of multiple factors that 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 care homes as de-facto hospices must be acknowledged. They 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.
