Our society is aging and we are living longer1. By 2035, deaths in the over 85s will represent 50% of all deaths in the UK1 and older members of our society will be more likely to die in a hospital or care home1 . There are three times as many care home beds than in the NHS2 and over 18,000 care homes in England3. Care homes and domiciliary care provide a significant amount of end of life care. This workforce is challenged by high staff turnover, lack of a tradition of research, audit, learning culture or, multidisciplinary input, with mostly untrained staff.4
The ABC programme
Hospices have an established history in education; but sometimes the only way to achieve what you want is to work with others, because you can’t reach all the people you want to5. Joining forces – sharing people, expertise, operating models and ambition can significantly increase your impact5. One of the challenges for hospices is to increase the extent and scope of their work and to develop greater reach1. The NHS East of England ABC end of life care education project is an example of a collaborative impact network of ‘organizations performing activities that lead to the same positive outcome’ 5. It reaches out to extend the scope and reach of end of life care. It recognises that education alone is not enough to change practice 6 and that high facilitation is also needed 7. It increases the confidence and competence of health and social care staff to deliver and lead end of life in their workplace.
Developed by the NHS East of England multi-professional deanery, the blended learning programme consists of six end of life care modules (delivered face to face or e-learning depending upon the work setting), follow up workshops, resources, DVDs, end of life facilitator educator support (EFE), champion support, audit materials (to demonstrate quality of care) and Train the Trainer project.
Over two years, 3,000 care home and domiciliary care staff have completed the programme. It has taken part in a comparison project with the Gold Standards Framework, reviewed by the University of Bedfordshire, evaluated by University of Hertfordshire for its Train the Trainer programme and recommended by Hertfordshire County Council as an example of best practice.
It has significantly improved the confidence of care home staff to deliver end of life care 8.
It makes a difference. Analysis of 400 deceased residents notes demonstrated a 77% achievement of documented preferred place of death 9.
It is a collaborative network of hospices, social care and NHS cancer networks, workforce development, palliative care teams, commissioners and stakeholders. Collaboration is crucial to make the biggest impact. It efficiently identifies issues, solves problems, bridges the gap between the reality and assumptions of the education delivery and uses resources as effectively as possible.
It is joined up leadership between hospices, the NHS and the social care sector.
It is relevant and accessible to the staff. Staff are supported to apply their knowledge to practice, extending it to problem solving and leadership.
It is facilitated by skilled EFE’s, clinically authentic and focused on supporting and empowering beliefs, attitudes, behaviors and values to care. The emphasis is that excellence is about paying attention to detail and delivering care with shared goals. The EFE’s translate end of life theory to practice by providing adaptable, accessible education embedded in their ability to adapt to the reality of the work setting through theory , narratives, real experiences, role modelling care and compassion.
It is highly evaluated in terms of relevance, content, delivery and ongoing support.
It provides systematic quality, audit and monitoring data including impact on care relevant to local and national end of life quality indicators which can be reported to commissioners and providers in health and social care settings.
It is sustainable through a train the trainer model, quality and audit documents, EFE support and linking into local end of life providers.
It has attracted intellectual, financial and social support from a variety of stakeholders.
Blending Learning to Care: examples
- Audit demonstrated an increased documented preferred place of death.
- In collaboration with local GPs, Hertfordshire Foundation Trust and care homes the team developed an Advance Care Plan Checklist to facilitate more efficient clinical practice.
- The EFE’s supported the staff to develop relationships with GPs and how to systematically discuss end of life residents.
- A home started their own train the trainer programme before the formal pilot had begun
- A frightened relative called the EFE because “the staff were choking his mother”. The EFE facilitated an impromptu session focusing on the resident’s needs, recognising dying, identifying end of life care needs, discussing cultural issues and supporting the family.
- The dementia unit had six deaths in one week including one in hospital. The EFE reflected with the staff. They decided to invite the wife of the gentleman who died in hospital if she would like him to return to the unit before he went for burial. This would allow him to leave from his ‘home’ and allow staff/residents to say their farewells.
- A care home developed their resource packs. The County Council visited them as part of the Hertfordshire End of Life Scrutiny review and were overwhelmed by the passion and commitment of the staff to end of life care.
- The EFE took staff from one home to another to see their dementia unit cafe. Inspired, the staff brimmed over with ideas of how they could do something similar.
- Agitated and distressed, a resident resisted being washed and dressed in the morning. A junior carer identified when the resident had lucid periods, that her joints were painful in the mornings and that she had previously always bathed in the evening. The carer organised an analgesic review and switched the main wash to the evening.
Care homes and domiciliary care agencies provide end of life care. Our experience is of a passionate workforce wanting to bring the hospice ethos to their work. The ABC programme performs as an impact network extending the scope and reach of specialist palliative care through education, empowerment and collaboration. It is a pragmatic, blended learning, facilitation model through education, resources, support, quality, audit materials and adaptability to the local situation. With an aging population, funded collaborative impact networks between hospices, health and social care is increasingly more important to make a difference to end of life care.
Calanzani N, Higginson IJ, Gomes B (Jan 2013) Current and Future Needs for Hospice Care: An Evidenced Based Report, Help the Hospices Commission in the Future of Hospice Care, Cicely Saunders International, Kings College London.
Badger et al (2009) an evaluation of a programme to improve end of life care in nursing homes. Palliative Medicine, 23 (6): 502-511
Hockley J (2013) Thinking Differently…Development of end of life care for frail older people in care homes: a case study. Presentation downloaded from
Hockley, J. (2006) Developing high quality end of life care in nursing homes: an action research study. Unpublished PhD. University of Edinburgh.
Kail A and Abercrombie R (Jan 2013) Collaborating for Impact: working in partnership to boost growth and improve outcomes NPC. Impetus Turning around more lives. Impetus Trust, London
Froggatt K (2001) Palliative Care in Nursing Homes: where next? Palliative Medicine, 15: 42-48.
Kitson A, Harvey G & McCormack B (1998) Enabling the implementation of evidence based practice: a conceptual framework. Quality in Health Care, 7: 149-158.
Cook M, Cook E, Driver R (July 2012) Palliative and End of Life ABC Education Programme: Impact Evaluation. University of Bedfordshire
Russell SJF (April 2012) Hertfordshire Nursing Homes after Death Analysis Summary of 400 deaths February 2011 to January 2012
The Collaborative Impact Network consists of staff from NHS East of England Multi Professional Deanery,The Hospice of St Francis, Berkhamsted, The Peace Hospice, Watford, Isabel Hospice, Welwyn Garden City, Hertfordshire County Council, NHS Hertfordshire, Hertfordshire Care Provider Organization, Anglia, Essex and Mount Vernon Cancer Networks, Burdett Trust, The February Foundation, St James Place, MGP Ltd, University of Bedfordshire, University of Hertfordshire, Public Health Action Support Team, Barchester Homes, Quantum.