‘End of life care is everyone’s business’ is a cry which resonates across the UK in 2013. Yet it is remarkable to note that when the End of life Care Strategy was launched in 2008 only a handful of specialist palliative care social workers out of a workforce of 1.5 million saw themselves as having an important role in end of life care.
It was in this context that the social care workstream of the National End of Life Care Programme (NEoLCP) began its work to raise awareness across the health and social care network, and also with the general public, of the crucial role which social care must play if the national strategy is to deliver its core aim of achieving a step-change in the quality of end of life care across the board.
In common with other health and social care systems around the world, the UK is having to respond to the needs of a population which is living longer, at the same time as grappling with a climate of economic constraint. It is therefore imperative that end of life care is seen as an embedded part of mainstream social care and not an add-on, delivered by a handful of specialists.
In the UK we tackled this by working with an advisory group of senior social care professionals in policy, practice and education as well as representatives from service user groups, to draw up a framework to guide social care practice at the end of life. This document, ‘Supporting people to live and die well: a framework for social care at the end of life’1 has been extensively used as the starting point for local strategies action and business delivery plans. It is built around ten key objectives:
- raising awareness of end of life care in social care settings
- develop integrated end of life care pathways
- improving commissioning for end of life care in the social care sector
- developing the resources of palliative care social work
- building end of life care into core social care assessment and support frameworks
- ensuring early identification of end of life care needs
- prompting and developing end of life care workforce programmes across the social care sector
- building supportive work environments for best practice in end of life care in local authorities
- supporting the wider development of community networks for end of life care
- building an evidence base for what works well in end of life care in social care settings.
These objectives link to the core knowledge, values and skills which shape the way in which social care services are developed and delivered in the UK. It is through these mechanisms that end of life care is gradually becoming an integral component of good social care for all people who are being supported, in their own homes – whether that is a private residence, a care home or a supported living complex – through the final phase of their life. Some of these people will never need palliative care, but they are nevertheless approaching the end of their lives.
Key to the approach is that everyone should have the opportunity to plan for their end of life in the same way as they express choices and preferences about their care throughout their life. In the same way as hospice philosophy affirms that people ‘live until they die’, so there is recognition that living well also means to die well, and that supporting people to maximise their quality of life should be a continuous process which only ends with death.
At the heart of social care at the end of life is personalisation. Personalisation is the key driver of current UK social care policy. It is underpinned by a concern for dignity and personal worth, respect for the individual, and choice and control. Stemming from these fundamental values is an approach which facilitates and supports the service user to manage their own care, an approach intended to transform the whole concept and process of service delivery. Making end of life care truly person-centred is fundamental to quality of life at the end of life and social care’s contribution has been key in the development and enhancement of person-centred practice across the end of life care workforce.
Rolling out the social care framework
Due in no small part to strong support from the Association of Directors of Adult Social Services (ADASS), there has been a significant culture change in social care around end of life care since the launch of ‘Supporting people to live and die well’, with a growing number of local and regional initiatives, pilot projects and, just as importantly, changes in routine procedures, such as service commissioning, to address end of life care needs. The NEoLCP has mapped these across four recurrent themes:
- sustainability and transferability2.
Each of these four aspects is critical to the ongoing success of improvements In integrated, holistic, end of life care. Currently there are three, equal, priorities:
Priority 1: building an integrated response at the front line
Priority 2: equipping the workforce
Priority 3: responding to the dementia challenge.
In addressing the second of these, and with specific reference to hospices, the NEoLCP funded a test site pilot to support the establish of a partnership with a London hospice (St Christopher’s) and local authority (Southwark) to develop a training programme which used the palliative social work resource to support awareness raising and skills development of managers and staff in the Borough, and to create a further momentum for sustainable change through the identification of end of life care social care champions. NEoLCP is now working closely with Help the Hospices and the Association of Palliative Care Social Workers to develop this approach as a portable, adaptable workforce development model for social care and social work which could be delivered through local partnerships between palliative care specialists, social care providers and education and training providers.
These are exciting times for end of life care as all providers are learning new ways to work together to meet the diverse needs of people approaching the end of life and build communities of shared interest and learning to promote best practice in end of life care. There is much still to be done but we go forward with confidence in pursuit of the ambitious objective of supporting everyone, everywhere, to live and die well.
Graham Brown, a participant in the West Sussex HOPE project for people with dementia and their carers, tells us what that means for him:
“Dying at home, I don’t think you can beat it really.”
- National End of Life Care Programme. Supporting people to live and die well: a framework for social care at the end of life. July 2010.
- National End of Life Care Programme. TEST: training, engagement,services,transferability and sustainability. May 2012