I joined St Christopher’s Hospice in 1987 and retire this summer. The intervening decades have seen significant expansion in palliative care services. The work leading up to the publication of the national End of Life Care Strategy in 2008 and its subsequent implementation has done much to disseminate good practice and to improve outcomes; the small but steady increase in deaths at home being one marker. It is now vital to ensure that end of life care continues to be a core priority in the wider health and care system. Nonetheless, despite our best efforts, a majority who could benefit from palliative care still lack access. A large body of research attests to the gaps and shortfalls, particularly for the already vulnerable and disadvantaged, and for frail, older people everywhere. The challenges are compounded by an ageing population, significant social change and inevitably constrained health and social care budgets.
The research endeavour must now focus on outcomes, on the difference we make to patients and those close to them; on what support works best for whom, in what circumstances and at what cost. Common data sets and patient and carer reported outcome measures must be agreed across all providers so that we can share activity costs and clinical outcomes nationally. Currow and his colleagues in Australia have amply demonstrated how much there is to gain from the benchmarking made possible by such an approach. Service providers everywhere need to focus on populations as well as meeting the needs of the patients in front of them.
Voluntary hospice services have a particular responsibility to engage in rigorous service evaluation. Their charitable status gives them the flexibility and speed necessary for innovation but such work needs to be undertaken with proper regard to value for money, replicability and scale. The increasing number of experiments in the integration of health and personal care, such as coordination centres and discharge support, and the natural test bed of the wide variety of configurations of ‘hospice at home’ services demands shared analysis and an enhanced understanding of preferences for care and how they change. A home death is not a guarantee of a good death and thinking differently and creatively about ‘beds’ will be important. We need to know much more about how best to support informal carers since it is clear that they will be shouldering an ever increasing load in the future. We need to understand more about the costs of caring and of bereavement, economic as well as psychological; to evaluate social and volunteer led models of community support and engagement, and to work out how to ensure that those most at risk are identified and get access to expert interventions. The early emphasis on the importance of social and psychological support for the ill individual and their family and friends must not be lost as we enter an increasingly cash strapped future.
Developing a confident and competent generalist workforce is key and our education and training initiatives also need to respond to the ‘making a difference’ agenda so that we better understand what really makes an impact in terms of improving practice, particularly around communication where endless surveys confirm ongoing difficulties for public and professionals alike. There are also considerable opportunities to develop the basic health and social care workforce by creating a nationally endorsed curriculum for vocational educational courses and training consortia large enough to secure funding and share products and development.
I am proud of the achievements of the large number of people who contributed to the Help the Hospices Commission into the Future of Hospice Care. A road map now exists for hospices and a raft of well researched materials to inform future partnerships with academic departments. We all need to learn to trust more and to partner well. We will only achieve our goals by working together across the whole health and social care system; by being prepared to challenge our taken for granted orthodoxies about service design and delivery. Only by working together will we find resource efficient ways to deliver the 24 x 7 services that are necessary to provide good end of life care. Somewhat paradoxically we will need the discipline to standardise and to create common platforms of influence and care, whilst holding on to the disruptive energy and innovation that characterised the beginnings of palliative care with its commitment to reaching out and responding to inequalities.