St Luke’s Education Team hosts End of Life Care forums which are attended by staff from care homes who have been involved in the Hospice’s Six Steps End of Life (EoL) Care programme. Forums held virtually during the Covid pandemic highlighted the huge challenges faced by care homes at this time. This prompted the Education Team to capture their experiences more formally so that their voices could be heard and their experiences learned from.
Around one-third of all deaths in England and Wales occurred in care homes in 2020 (Office for Health Improvement and Disparities 2022). During the pandemic care homes were caring for the most vulnerable at the end of life with high levels of uncertainty and without the usual levels of MDT support due to Covid restrictions.
Background to the study
The St Luke’s Six Steps EoL Care programme began in 2011. It comprises 9 half-day workshops based on the Six Steps EoL model (DoH 2008) and is open to staff from residential and nursing homes. On completion of the programme, those attending become EoL Champions who then provide end of life education and support to colleagues in their settings. EoL Care Forums are held three times yearly to allow EoL Champions to meet, update and share their successes and challenges.
Objectives of the study:
- To identify issues faced by care home staff during the Covid pandemic and their effect on EoL care
- To provide a voice for care home staff, capturing their experiences of the pandemic
- To identify ways to support care home staff in delivery of EoL care in the future
Methods:
- Using a focus group approach, 30 care home staff from 22 nursing and residential homes attending the St Luke’s EoL forum were asked about their experiences during the Covid pandemic. Those participating included Registered Nurses, carers and managers.
- Data were collected from:
- Flip charts on which six small groups listed issues, both positive and negative, identified as arising from the Covid pandemic as it affected their staff, residents and families
- Vignettes or testimonies described by carer staff directly to individual members of the St Luke’s team
- An iterative process was used, with the lead author initially analysing data and generating themes
- Initial themes were refined by the co-authors before being fed back to the participants who confirmed that they reflected their experiences
Emerging themes from the data:
- ‘Fending for ourselves’ (negatives and the positives): ‘Feelings of abandonment’; ‘We are the ‘FORGOTTEN FRONTLINERS!’; ‘Lack of outside professionals’; ‘Limited access from MDT’; ‘Six Steps knowledge gives confidence to challenge situations / share knowledge’; ‘Teamwork – above and beyond roles’; ‘Carers being more respected (‘unskilled’)’
- ‘Daily firefighting’: ‘guidance constantly changing (137 times)’; ‘Increased pressure to keep up with admin jobs ….. apart from pressure in maintaining good quality clinical practice’; ‘Conflict with family re guidance from government’; ‘Lack of PPE – increased prices / PPE sent to NHS’
- ‘Aftermath’ (negatives and positives): ‘We gained a different valuable perspective in dealing with death and dying’; ‘We came out stronger! WARRIORS!’; ‘Burnout – fatigue amongst staff, difficult recruitment’; ‘Catching up difficulties – training / qualifications’
Vignettes / testimonies:
‘Patient deteriorating. Nursing staff requested GP visit several times to review as felt EoL (last months), wanted to put things in place like just in case medications and be able to support with conversations with family. GP declined to visit as not LDOL’
‘Resident with ongoing deterioration, visit requested from GP. GP did video call and patient died later that day. NH staff felt unsupported, not listened too, had wanted to put things in place earlier’
‘Covid and restrictions have led to increased skills and knowledge of staff due to their experiences…..Great workforce – staff invested in residents – made decision to go to work even when had vulnerable people at home. Social care ‘world’ not given much recognition’
Conclusions and action plan:
Our findings reflect the difficulties the pandemic created for carers, residents and families but also highlight the commitment and resilience of care home staff.
Our conclusions recognise the need to:
- Value the skills of and the key role played by care homes in provision of EoL care
- Build on existing education programmes, such as the Six Steps Programme, supporting care homes in provision of EoL care.
We are sharing findings at local health and social care forums. We are also working with care homes to look at ongoing development needs, with a programme planned aimed at equipping staff with enhanced assessment skills to support decision-making when the condition of EoL residents deteriorates.
As stated by Oliver (2020) ‘The current crisis has brought into sharp focus issues around funding, staffing, and support for care homes that we should have tackled many years ago. Let’s not forget this when the crisis is over’
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Author: Liz Lawley, Clinical Educator, Education Team, St Luke’s Hospice Plymouth
Co-authors: Paula Hine, Head of Education; Cathryn Goodchild, End of Life Programme Lead; Iain Mitchell, Clinical Educator
For further details of the Six Steps programme go to: https://www.stlukes-hospice.org.uk/six-steps-programme/
For further information about all St Luke’s Hospice, Plymouth, courses, including partnership modules with the University of Plymouth – two of which are delivered virtually – then go to: https://www.stlukes-hospice.org.uk/courses/
References:
Department of Health. (2008). The End of Life Strategy. London: DoH
Oliver, D. (2020). Let’s not forget care homes when covid-19 is over. BMJ. 369, 1629.
Office for Health Improvement and Disparities. (2022). Palliative and end of life care profiles. Fingertips Public Health Data. Available online at: https://fingertips.phe.org.uk/profile/end-of-life/data
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