If you ask them, care home staff, healthcare professionals, residents and their families would all wish for and want to achieve the same outcome: a good death. But how can that be managed with all the uncertainties at play and with so many people and points of view to consider?
What people want, their care needs, how to interpret and treat symptoms, and who becomes involved in the decision making when someone with dementia is dying can become a source of anxiety, upset and frustration for everyone involved.
What’s been missing until now is a way of framing those uncertainties that can help make sense of the challenges, acknowledge them and have productive and helpful discussions that bring about the best decisions.
Research carried out by Claire Goodman has found that care home staff, healthcare professionals, Residents and their families may not always agree on the best approach to end-of-life care.
Using three different studies, the research – presented at the Economic and Social Research Council’s National Centre for Research Methods Festival – tracked the care of older people in 29 care homes over a 12-month period. Altogether, 528 residents, 205 care home staff and 44 healthcare professionals took part in the research.
The research found that end-of-life interventions were characterised by uncertainty in three key areas:
Which is the “right” treatment?
Who should do what and when?
In which setting should end-of-life care be delivered and by whom?
Treatment uncertainty was an issue when a resident had been stable with no signs of decline, who had previously recovered from a similar episode of ill health or when deterioration was protracted with periods of good health between episodes of ill health.
It was further complicated by how quality of life was defined. care home staff, residents and family members said it was about residents’ ability to respond, engage with others and appreciate the home environment. For visiting primary care staff, it was linked to whether the intervention would lead to recovery of function or improvement.
Even where an advance care plan had been put in place, these competing narratives of what a good outcome looked like could not always be resolved.
When it came to who should do what when someone was dying, there was uncertainty about roles and responsibilities at both an organisational and an individual level.
Decisions to treat were GP-led, but this was a complex process between care home staff, visiting healthcare professionals and families. Visiting GPs had the (clinical) authority to make key decisions about hospitalisation or treatments, but this was undermined by infrequent contact with, and partial knowledge of, residents. Healthcare professionals providing urgent or emergency care found navigating these relationships even more problematic.
Care home staff often lacked confidence, concerned that relatives might be upset and lodge a complaint, and that this could lead to issues with the regulator.
Even where working relationships were robust and treatment was clear, end-of-life care could still be adversely affected by the way services were organised and resourced.
There was a lack of confidence among staff about their ability to deliver proper end-of-life care if promises of services and resources from the NHS did not materialise.
From all these insights, the outcome of the research concluded that uncertainty is an inevitable and integral part of end-of-life care for people with dementia. Residents’ characteristics, the protracted period of dying, multiple and changing personnel involved, different definitions of quality of life and the realities of working across health and social care mean uncertainties cannot always be resolved.
In simple terms, even with access to evidence-based guidance on how to support people at the end of life in care homes, there are times when it will not always be clear if palliative care is the right treatment, who should do what and when, and if the person can be supported to die in the care home.
The acknowledgement of these uncertainties according to Claire Goodman should not be seen as a failure, but as something that has to be worked at over a period of time by all those involved. There needs to be opportunities for conversations between care home staff and NHS practitioners to work through the options available to them.
Although uncertainty is an inevitable and integral part of end-of-life care, it is of paramount importance that care home staff can demonstrate the continual involvement of those nearest to the person. Clear communication between the perspective parties involved in the end-of life care plan, and care staff learning from their experience, may help to address the uncertainty.
Claire Goodman is professor of healthcare research at the Centre for Research in Primary and Community Care at the University of Hertfordshire
Albert Cook Albert Cook BA, MA & Fellow Charted Quality Institute
Bettal Quality Consultancy