PALLATIVE CARE Dying Matters:
Improving UK Palliative Care Provision
The National Council for Palliative Care talk about breaking down the
stigma attached to dying and explore how every community needs to work together to improve current provision, and most importantly meet patients’ wishes.
A demographic wave means that the absolute number of deaths each year is set to rise in the next decade, and thanks to advancing medical developments, many of those deaths will be over a longer period of time. The end of life care challenge is therefore set to be threefold involving more deaths in absolute terms; more of those deaths taking place at home; and increasing need to maintain good quality of life during a lengthy decline.
The Dying Well Community Charter, together with the public health approach, as part of the Ambitions framework, sets a way to achieve this. It requires a lot of changes, to attitudes, to training, to the allocation of resources. But this is not something anyone can ignore. How a society cares for the dying says a lot about how it cares for the living. How will we respond to the changes and the challenges that are coming?
A Look at the Charter The Dying Well Community Charter was launched by the National Council for Palliative Care in 2014, based on earlier work by the NHS North East Strategic Health Authority in 2010. It is based on a commitment by individuals, communities and organisations to work together towards a set of key principles, all aimed towards breaking down the social taboos that isolate death and
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the dying, and make it easier for us all to care for one another as any one of us nears death.
The principles are recognition and respect, communication, involvement, support, and help us to plan and do. The charter itself is a simple two-page document to be found on the NCPC website, but it aims to make a big difference, and it is already having an effect.
A group of eight pathfinder sites were recruited by Public Health England and NCPC in 2014 out of 23 applicants to pioneer a public health approach to end of life care, using the Charter as a framework. All committed to hold events, work with existing local organisations, raise awareness of the Charter and help evaluate their work. There was no additional financial support for this, although the NCPC provided project coordination and evaluation support, and covered travel costs to quarterly meetings. This evaluation was published in the summer of 2016, and the full document can be found on the NCPC website.
A Positive Response The evaluation showed a range of mixed, but generally, positive outcomes. Although one of the eight had to withdraw part way through the scheme, it still became a focal point for end of life care in that locality. The other seven completed the pathfinder scheme, and the feedback
and analysis found high enthusiasm and good understanding of the principles of community engagement.
However, the existing knowledge of community development varied greatly, and in some places lack of knowledge limited progress. Simpler schemes were more effective than complex ones, and engaging at different levels, and taking time to build networks, proved effective. The learning shared between the different pathfinder groups at the quarterly meetings was invaluable, and the ability to support each other was very welcome.
A Public Health Approach As indicated above, the Charter is closely linked to a public health approach to end of life care. It’s also closely linked to Ambition 6 of the Ambitions for End of Life and Palliative Care.
The goal of taking a public heath approach to end of life care is to broaden it out from the traditional focus on pain and symptom relief, particularly for cancer patients. For example, it is to recognise that dementia is a life-limiting condition; that the stigma associated with conditions like HIV can cause stress that makes the person more ill; that isolation can accelerate decline; that humans are social animals, and that being - and remaining - part of a community can ease people’s fears as they approach death.
www.tomorrowscare.co.uk
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