Glasgow End of Life Studies Group

Palliative Care Policy as Varied and Complex: A Taxonomy of Interventions

The potential breadth and complexity of the palliative care policy area is increasingly being recognised; Abel, Kellehear and Karapliagou’s (2018) for example differentiating between ‘specialist’, ‘generalist’, ‘community’ and wider ‘civic’ forms of intervention. The conceptual and practical basis of this ground was explored within a piece of work undertaken by the Group and led by Professor David Clark. 10 substantive intervention categories were identified: policy, advocacy, educational, ethico-legal service, clinical, research, cultural, self-determined. These are set out below:

Further Links

Abel, J., Kellehear, A. and Karapliagou, A. (2018) Palliative care–the new essentials. Annals of Palliative Medicine, 7 (Suppl. 2), S3–S14.

Clark, D., Inbadas, H., Colburn, B., et al. (2017) Interventions at the end of life – a taxonomy for ‘overlapping consensus’, Wellcome Open Research, 2; 7. 

Perspectives on Global Palliative Care Policy

As well as individual nations pursuing the development of their own form of policy, there is a growing interest in the comparative analysis of policy in a wider global context. This work has critically highlighted the problematic nature of accepted orthodoxies on what is considered ‘high quality’ palliative care and the difficulties of simply ‘transferring’ policies and practices from one domain to another. This ground was explored within a piece of work undertaken by the Group led by Dr. Shahaduz Zaman. Drawing on subaltern and post-colonial theory, the work sought to critique and re-frame these assumptions, offering up the possibility of more pluralistic global perspectives on care for the dying.

Further Links

Zaman, S., Inbadas, H. Whitelaw, A., and Clark, D. (2017) Common or multiple futures for end of life care around the world? Ideas from the ‘waiting room of history’, Social Science & Medicine 172; 72-79. 

‘Public Health’ Policy

One specific expression of policy development within palliative care centres on the notion of the domain being seen as a ‘public health’ issue. In this context, public health informed policy suggests the need to pursue and co-ordinate a wide range of approaches and interventions – legal, clinical, educational and social. The latter theme is particularly prominent in relation to promoting community engagement and nurturing ‘compassionate communities’. Whilst various countries have adopted these principles as policy templates, work within the group has sought to critically appraise the robustness of this application, concluding that if public health is considered to have intrinsic and definable worth, the association needs to be significantly developed with much higher levels of theoretical, practical and critical engagement between the two disciplines.

Further Links

Kellehear, A. (2013) Compassionate communities: end-of-life care as everyone’s responsibility, QJM, 106; 1071–1075. 

Scottish Partnership for Palliative Care (2018) A road less lonely: moving forward with public health approaches to death, dying and bereavement in Scotland. Edinburgh: Scottish Partnership for Palliative Care.

Whitelaw, S. and Clark, D. (2019) Palliative care and public health: an asymmetrical relationship?, Palliative Care and Social Practice, , 1-14.

The Relevance of ‘Total Pain’ in Palliative Care Practice and Policy

In 2019, Dr. Marian Krawczyk and Dr. Naomi Richards co-authored a journal article which proposed that a decades-long lack of inquiries into the concept of total pain has led to a knowledge gap and disparity in understanding between clinicians, and that a deeper understanding of total pain is a priority for the evolution of palliative care practice and policy.

The article offers a brief outline of key issues in defining total pain, considers some of the professional and system-based challenges to addressing total pain, and suggests how the substantial knowledge gap about total pain has potentially serious consequences in clinical practice and policy development. We hope this stimulates further interest and inquiry as to the relevance of total pain within the contemporary culture of palliative care.

The full article can be found here:

Krawczyk, M. and Richards, N. (2018) The relevance of ‘total pain’ in palliative care practice and policy. European Journal of Palliative Care, 25 (3); 128-130.

Find out more about our work on 'Total Pain' here.

Further Links

You can read a longer blog post about the article at the European Journal of Palliative Care website:

https://eapcnet.wordpress.com/2018/07/30/the-relevance-of-total-pain-in-palliative-care-practice-and-policy/

Case Study: Exploring the Implementation of Palliative Care Policy 

One of the best examples of considering the detailed nature of actual policy implementation within palliative care comes from work undertaken by May et al (2014) in Ireland. In 2001, this country was one of the first to develop a defined national palliative care policy.

This analysis adopted a ‘policy analysis triangle’ as a resource to review the construction, implementation and impact of the policy. Whilst noting progress, the work highlighted various difficulties in enacting policy in this emerging field. A series of issues that need addressed were identified, including navigating the complexity of the field; being conscious of the relationship between ambition and feasibility; identifying sufficient resources and the challenge of attracting these in competitive policy circumstances; and using these resources to develop workforce and general capacity

May, P., Hynes, G., McCallion, P., Payne, S., Larkin, P. and McCarron, M. (2014) Policy analysis: Palliative care in Ireland, Health Policy 115, 68–74.

On-going Critical Lines 

Despite the optimism often associated with calls for policy development in palliative care, there is little work that actually appraises the extent to which success is achieved on the ground and in some quarters some scepticism over the substance of such calls. As such, the Group are currently working in the following areas:

• Based on work previous work that has mapped global levels of palliative care provision [link to Clark, D., Baur, N., Clelland, D., Garralda, E., Lopez-Fidalgo, J., Connor, S. and Centeno, C. (2020) Mapping Levels of Palliative Care Development in 198 Countries: The Situation in 2017, Journal of Pain and Symptom Management, 59 (4); 794-807], the re-analysing generic data to quantify and understand the patterning of levels of policy activities across countries [David Clelland and David Clark];

• A systematic review of literature associated with palliative care policy with a view to mapping the nature of expressions (geographical spread, status, focus, intentions, stages of completion) [Sandy Whitelaw, David Clark and Anthony Bell];

• An analysis of the expression of palliative care and end of life issues in Health and Social Integration Strategies in all regions across Scotland [Anthony Bell, David Clark and Sandy Whitelaw].