Having had a very unpleasant end of life experience with my father who had vascular dementia in an acute hospital, where there was little dignity and privacy at the end for him, I was determined my mother’s experience would not be a repeat. The thought of her in her last stage of life being taken into A&E on a trolley at night was something we knew she would never cope with.
My journey over 10 years with my mother who was living with dementia in a care home has been an experiential roller coaster of learning from ‘the other side of the fence’. Having spent over 20 years of my working life in care homes we found ourselves unexpectedly consumers of the care home sector, first with my father who had multi-infarct dementia and then my mother who had a combination of both vascular and the Alzheimer’s type of dementia. It is now 2015 and not much has changed since 2009 when my mother died where we hear on the BBC News that A&E and out of hours services not coping with enabling frail older people to die with dignity – see attached link:
http://www.ombudsman.org.uk/__data/assets/pdf_file/0019/32167/Dying_without_dignity_report.pdf
From my learning Care homes will see an increase in demand for end of life and short stay care as the NHS reduces community beds, therefore practice development and knowledge in end of life care is necessary for continuous improvement towards dignity at the end of life in all care contexts.
Continuity and co-ordination
Older people with dementia and other complex chronic conditions and their families in residential homes are at risk of uncertainty about where they will die, lack of continuity and anxieties about how their needs will be understood.
End of life wishes need to be discussed and incorporated into care plans when people come into care homes.
Families and care home staff who know residents well are pivotal to interpreting pain and distressing symptoms
Residential homes without nursing require co-ordinated community multidisciplinary support.
A co-ordinating role is needed to ensure the communication across and between all parties at the interface work collaboratively to provide quality end of life care for people with dementia who chose to die in the home.
Positive leadership and interagency collaboration which is well co-ordinated by an agreed person will ensure less people are admitted to acute hospitals at night including Thames Doc arrangements.
Practice development and education
To develop socio-health models of nursing and social care for older people in all health and social care settings shaped by biological, sociological, psychological, and medical perspectives
To encourage practice development through the promotion of education and training initiatives that use contextualised and blended learning methods. Community professional staff visiting care homes need to change their roles to incorporate action based contextual learning experiences to develop practice skills for staff in the care homes.
More involvement of care homes with Higher and Further Education institutions, and relevant statutory bodies in the furtherance of research and practice development that will benefit older people with health and social care needs in all health and social care settings
PCT community staff will benefit from learning coaching , facilitation skills to maximise adult learning experiences in the residential care home setting for front line staff, to support dignity at the end of life.
For Care homes
Policies to outline what needs to be discussed at the outset, with residents and families and friends, jointly or separately, including the GP in discussions.
Use feedback about families’ experiences to inform quality improvement programmes
Discuss what happens after a death, including practical arrangements with the family
Provide information about bereavement support for families
Recognition and emotional wellbeing of the workforce
To provide staff support where they can be helped with their grief
Commissioning and practice should incorporate practice development, quality improvement for end of life support for people with dementia and other chronic conditions in care homes and recognise the emotional labour of those caring for them.
Promote caring for older people as a positive and worthwhile occupation
We produced OUR PLAN with a team in Surrey as a result of this experience that helps family and Carers to support someone living with dementia. It does this by helping them consider what may happen, and to make a clear record of their decisions. In six steps it guides someone to prepare and plan for the journey and provides you with some forms which will help you record your wishes for how you would like to be cared for in the future