Public health approaches in palliative care: investigating their impact

Hosted in partnership with St Joseph’s Hospice and the Karolinska Institutet, Stockholm, the first in Help the Hospices new series of master classes brought together academics and hospice practitioners from across the UK and beyond to think about the complex issue of how to evaluate public health approaches which focus on improving the experience of people who are dying or facing loss.

Held at the beginning of May, participants worked with Prof. Carol Tishelman and Dr Olav Lindqvist, who are developing a programme of research related to health-promoting palliative care; Dr Libby Sallnow, who is evaluating a public health project in east London; Dr Chris Bailey, who is leading a large research project at the University of Southampton on a community-based volunteer-led intervention; and Elizabeth Bayliss and Rupesh Shah from the community development charity, Social Action for Health.

‘Everyone has a responsibilty’

There is an inherently social character to illness and dying. Sallnow and Paul have described community engagement in end-of-life care as an umbrella term encompassing a process “which enables communities and services to work together to understand, build capacity and address issues to improve their experience of end-of-life and bereavement and their related wellbeing”.[1] 

Public health in palliative care is participative in that it recognises the importance of doing things with people, rather than to them and as Bailey pointed out, it is possible that communities may be able to do different or better things. 

Therefore, initiatives work best when they start with the people, acknowledging that everyone has a responsibility to live as well as they can and that an improved articulation of palliative care is key in aiding understanding and awareness. Going out to meet people in their community contexts, in social situations they create and generating opportunities for dialogue are important first steps advocated by Social Action for Health. There is room here to think creatively – consider paper-based, face-to-face and digital media opportunities as means of engaging people in research and gathering data.

Culture of learning

Health promoting palliative care needs curious minds; believing that it’s a good idea is not enough. 

Tishelman and Lindqvist sought to inspire that curiousity, asking what outcomes matter? What are the research questions? What we trying to achieve? There is more to this than getting people to talk about death. New ways to disseminate knowledge from specialist palliative care to match population needs are needed. There’s opportunity too, to work with an array of disciplines, including ethnography. It follows that working with new disciplines provides new audiences for community awareness raising purposes.

We also need to know if these approaches work. The partnership approach of participative evaluation, Shah pointed out, oriented towards inquiry and learning rather than inspection and blame, can actively engage stakeholders in developing and implementing the process.

Can we fix it? Maybe not everything…

From the Empowered Living Team in Newham to the transformative work streams of the End of Life Partnership in Cheshire, delegates heard about a wide array of public health initiatives in end of life care. 

But, do our aspirations to transform end of life care with a whole public health approach need to be tempered by a more pragmatic assessment of what is achievable? Is there a danger of mission drift within palliative care which risks raising issues without the means of enabling solutions? Perhaps the answer lies in asking ourselves how we can better disseminate our expertise; everyone has an end of life, but not everyone receives palliative care, how can we more effectively match and meet population needs?

Ideas to get started

Take inspiration from the master class delegates who shared ways in which they will be taking forward a public health approach to palliative care:

• Get involved with initiatives such as Dying Matters and Good Life, Good Death, Good Grief.
• Find out what communities want. For example, organise a community health intelligence group and ask “What would make a difference to our experience of end of life care and bereavement support?”
• As a practitioner, ask yourself – “What is working well; what would make it even better?” Where do the gaps lie in support for patients, carers and others in our communities?
• Get connected. Continue the discussion and share knowledge by networking with participants from this master class. Share and comment on this article via ehospice.
• Broaden your knowledge – get further reading suggestions.

Acknowledgements

With thanks to the participants of this master class and to the Karolinska Institutet for their generous support of this event.

About the master class series from Help the Hospices

This new series showcases practice and offers contemporary perspectives on challenges which many hospices are facing. They enable small groups of peers to work with expert practitioners to share experiences and refine their ideas and help to develop informal networks so that learning continues after each event.

Coming soon…

The next master classes are:

• ‘Respite and rehabilitation: changing pre-conceptions and practice in hospice and palliative care’ – 11 June, St Joseph’s Hospice
• ‘Harnessing social media to enhance hospice care and support‘ – 10 July, The Hospice of St Francis, Berkhamsted.

Access a further reading list from the Public Health masterclass here or for more information or to suggest topics for future master classes, contact Jean Hindmarch at Help the Hospices.