On Monday 22 April, a debate of hospice funding was held in the House of Commons. From the comments, there is no doubt in everyone’s mind that hospices provide high quality care to patients and their families at a time when it is most needed and they are seen as a truly valuable service in England.
Funding for end of life care has always been competitive in both care services and research capture in comparison to other health funding for treatments in cancer or even care at the start of life such as maternity services; ironic, given that all of us will at some point experience the impact of death.
The charitable status of hospices has its benefits and provides them with strength; which hospices will be reluctant to lose. The support for local hospices is often strong with visible fundraising activities. Charitable donations and retail enterprises situate hospices in the heart of a community but the deficit is too high to rely on the unpredictable nature of charitable income.
Times are changing
As a society it is important for us to acknowledge that hospice care nowadays is quite different to what it was 10-15 years ago.
We are living in an ageing society where most people seeking health and social care have more than one chronic, progressive or terminal condition. Most people in our hospice services have co-morbidity i.e. multiple cancers, heart failure, dementia or frailty in addition to their primary diagnosis for which they are receiving hospice care.
Care seen in hospice inpatient units is specialist palliative care for what healthcare professionals may see as ‘complex dying’. In the community, hospice at home services are also managing complex, unpredictable, rapidly changing needs of patients to enable people to stay in their own homes (where that is their choice) whilst receiving high quality, dignified, compassionate care.
Hospices in England are no longer a place where people ‘go to die’; they provide an essential service to enable people and their families at a time of ‘crisis’. The crisis may be from pain, agitation, infection, significant reduced mobility or compression, increased sickness or reduced cognition associated with their terminal diagnosis.
Such care should not be solely reliant on the goodwill of people running in marathons, baking cakes for community sales and buying from charity shops.
Professor Cara Bailey
Sometimes the crisis will result in death and with high quality palliative care the outcomes will be a good death where symptoms are controlled, dignity is preserved, communication is clear and there is space to be with those who are close to the dying person and support enables them to be prepared.
At other times the patient will be stabilised and discharged home (with good outcomes as a result of hospice care) once the crisis is resolved. Hospices manage palliative care crisis; it is essential and should be funded appropriately as other services in the health system are.
Such care should not be solely reliant on the goodwill of people running in marathons, baking cakes for community sales and buying from charity shops.
If hospices are not sustainably funded and consequently close; more people at the end of life will have no option but to seek urgent care during a crisis from already overcrowded and stretched Emergency Departments in hospitals. Hospitals are not people’s preferred place of end of life care but often become the place that people seek support.
Questions that need asking
What could and should be explored in more detail as part of the debate, are two further questions.
First, how can hospices provide more inclusive end of life care for people at the end of life with non-complex needs previously underserved in terms of hospice care?
Many hospices are innovatively developing their services to meet such needs, such as Fast Track Hospice Beds to prevent hospital admissions or Hospital Discharge Beds to admit people from Emergency Departments or Urgent Care to prevent lengthy and costly hospital stay. Such admissions are in addition to the specialist care they provide. It benefits not only the patient and family but also the NHS, freeing up acute hospital beds and therefore needs sustained core funding via the Integrated Care Boards, and accountable by NHS England through reassurance of an NHS funding plan as part of a system wide attempt to prevent hospital admissions.
Hospices around the country have space and if funded to support increased staffing and resources, would have capacity to admit people at the end of life (with non-complex needs) in addition to the inpatient care that mostly focus on meeting complex, specialist palliative care needs.
Longer term, there will be both financial cost savings within the wider system and personal cost savings enabling better outcomes at the end of life. But hospices need to be integrated more closely with other areas of the health and social care sector to ensure innovations (such as fast track and hospital discharge beds) are accessible and appropriate to all who may need them and that they are paid to take the burden off the wider system.
Where is the evidence?
Secondly, where is the evidence to support sustainable change and improvement?
What makes it difficult for NHS England is the significant lack of high quality evidence about palliative care interventions and the impact that innovations have for people at the end of life, their families and the hospice workforce. Hospices are having to innovate to respond to need but significant lack of research funding means the evidence base does not always follow the service change or intervention.
As a result, decisions are often made without available evidence to support them. More research funding is needed to help make evidence informed decisions that benefit all and ensure sustainable, high quality care.
Palliative and end of life care and research needs to be given a greater priority and fairer funding to continue the vital role they play in health and social care sector, our communities and society as a whole.
Professor Cara Bailey is a professor of end of life care at the University of Birmingham and St Giles Hospice, West Midlands. Her research expertise focuses on palliative care crisis and quality of end of life care.
