Debbie Dempsey, the manager of Hospice in your Care Home at Wigan and Leigh Hospice, shares her thoughts on how care homes as sites for palliative and end-of-life care are becoming increasingly important.
In England approximately 22 per cent of people over the age of 65 die in care homes (ONS 2011) but many more care home residents are sent to hospital to die – often unnecessarily.
Deaths in care homes often have multiple causes, with a higher rate of non-cancer conditions than any other care setting (ONS 2012).
An ageing population will further exacerbate this which emphasises the need for investment in care homes as sites for palliative and end of life care delivery. The ever-increasing complexity of medical conditions faced by residents presents a challenge for care home staff which can result in elderly and frail patients presenting at A&E, often followed by lengthy hospital admissions with many dying in unfamiliar surroundings.
The delivery of good quality end of life care in care homes requires an effective balance of external support – such as systems to ensure timely access to medication and syringe pumps – with internal resources, such as staff who are well trained and who work in a supportive culture in which they are able to make residents’ and their relatives’ needs and concerns their first priority. The challenges facing the effective delivery of palliative and end of life care in care homes are well-documented and include:
- Increasing complexity of residents’ needs and the subsequent difficulty of diagnosing/recognising when someone is dying as the emphasis of palliative care shifts from cancer to encompass all residents dying from multiple co-existing diseases.
- Care home staff lacking confidence to communicate with patients and families about end of life issues.
- Lack of knowledge relating to symptom control, the appropriate medication available and the accessibility of drugs, particularly out of hours.
- Lack of confidence in using syringe pumps for delivering symptom management when patients are unable to swallow medication
- Workforce issues, including minimum numbers of staff, the rapid staff turnover in some care homes and different cultural approaches to death and dying with multicultural workforces
- Pressure from carers and families to send deteriorating end of life residents to hospital in the hope that curative treatments may be available. (Froggatt and Seymour 2008)
Whilst some hospital admissions are unavoidable, evidence suggests that emergency admissions from care homes are often unnecessary and preventable with the appropriate support and a skilled workforce (Thomas & Lobo 2011).
The Hospice in your Care Home service based at Wigan and Leigh Hospice offers dedicated continuous support to local nursing homes via a programme of education and role modelling. The aim is to empower staff to manage their residents during the end of life phase and promote a culture of ‘living well’ until death through the provision of hands on clinical training and an emphasis on person-centred decision-making.
The team work with staff at all levels, both clinical and non-clinical, to promote a whole systems approach to delivery of high quality evidence-based care, placing the resident and those important to them, at the heart of every situation.
Although the hospice still provides direct care for care home residents the team have found that by educating staff their expertise has been able to help many more people. Independent research also found that unnecessary hospital admissions from the care homes we work with were reduced by 25 per cent in the first year (Lancaster University 2016). Further analysis of hospital admissions shows that this trend has continued in the second and third year of the programme with an average of 26 per cent reductions across the 11 homes.
Additionally, in terms of impact on the local health economy, by reducing unnecessary hospital admissions this has also freed up resources and reduced pressure on ambulance and District Nursing services. It also means that residents have been spared the upheaval of a visit to hospital and, in the case of those being admitted at the end of life, it means that instead they have been able to die in their own home with familiar people around them. It is also important to remember the psychological impact on those left behind knowing that their loved one died at home in the place of their choice.
The recognition that a lot can be done for someone in the last 12 months of their life is often one which has been overlooked, but we have seen a significant shift in attitudes, particularly in those homes we have been working with for the past three years. We are now seeing some truly excellent end of life care taking place which is innovative and rewarding to be part of.
The Hospice in Your Care Home team is facilitating a conference in March 2019 chaired by Hospice UK CEO Tracey Bleakley which will explore the need to promote person-centred care to care home residents, to enable them to maximise their potential and communicate their preferences and wishes effectively.
Living and Dying Well in a Care Home will also look at some of the innovative work currently taking place in care homes and speakers including author of ‘The Art of Dying’ Dr Peter Fenwick and Dr Martin Vernon, National Clinical Director for Older People at NHS England, who will highlight how care home staff can help their residents to live more fully before they die.