How can palliative care engage policymakers? By offering a route to health and social care integration

While taking part in a King’s Undergraduate Research Fellowship at the Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, UK, Josephine Jewiss and Natasha Joseph were involved in a project to understand how, and if, UK policymakers address palliative care. Together with Rachel Cripps, Catherine Evans and Katherine Sleeman, Josephine and Natasha explain the potential implications of this work.


Left to right: Josephine Jewiss, Natasha Joseph, Rachel Cripps, Katherine Sleeman and Catherine Evans

Strategic planning of health and social care is an important tool for promoting improvements in patient care. Just one in 10 people globally who need palliative care receive it. Given future projected need for palliative care worldwide, inclusion of palliative care in health and social care policy is imperative.1

In the UK, demand for palliative care is expected to increase by 25 per cent by 2040.2 Although the UK came top of the Economist Intelligence Unit Quality of Death index in 2015, the extent to which palliative care is a health and social care priority is unclear.

To understand how (and whether) policymakers in the UK address palliative care, our team carried out a documentary analysis of UK health and social care policies.3 We found that while end-of-life care was rarely a policy priority, palliative care offers policymakers a means to achieving their broader aims for service improvement.

The study had two objectives. First, to examine the prioritisation of palliative care in national health and social care strategies, and second to identify policy priorities that might be opportunities for improving palliative care.

To meet the first objective, 15 UK health and social care policies were systematically searched and analysed using summative content analysis to identify the extent to which palliative and end-of-life care was mentioned, and the context. We found that palliative care was rarely explicitly prioritised in these policies, and details regarding improvements were sparse.

This may indicate equivocal political support for palliative and end-of-life care, or that policymakers have limited knowledge of the evidence base on the value of palliative care for people affected by life-limiting conditions. Both possibilities carry consequences for patients.

In light of this, the second objective of the study was to identify core priorities for policymakers that might be opportunities for palliative care, by exploring the same documents in depth using thematic analysis. Three core priorities were identified as themes; these were integrated care, personalised care, and support for unpaid carers.

Palliative care is one of few interventions shown to support patients to remain in community settings and reduce reliance on acute services, key goals of integrated care.4 The delivery of palliative care through individualised communication and effective symptom control is inherently personalised.5 Specialist palliative care improves outcomes and satisfaction for patients and carers.6

Palliative care therefore offers an evidence-based route for policymakers to achieve their stated priorities around integrated care, personalised care and support for unpaid carers.

For decades there have been calls for palliative and end-of-life care to be prioritised in health policies, with limited success. This study highlights the reciprocal relationship between palliative care and policy priorities and offers a fresh perspective on engaging policymakers. For researchers, including outcomes relating to these three priorities may increase the impact of research, and ultimately the benefit of research for patients.

Framing palliative care as an evidence-based way to achieve stated policy priorities provides a new approach to engage policymakers to improve care for the dying.

References

  1. Sleeman, K.E., de Brito, M., Etkind, S., Nkhoma, K., Guo, P., Higginson, I.J., Gomes, B., & Harding, R. (2019). The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions. The Lancet Global Health, 7, e883-e892, doi: 10.1016/ S2214-109X(19)30172-X.
  2. Etkind, S.N., Bone, A.E., Gomes, B., Lovell, N., Evans, C.J., Higginson, I.J., & Murtagh, F.E.M. (2017). How many people will need palliative care in 2040? Past trends, future projections and implications for services, BMC Med, 15, doi.org/10.1186/s12916-017-0860-2.
  3. Sleeman, K.E., Timms, A., Gillam, J., Anderson, J.E., Harding, R., Sampson, E.L., & Evans, C. (2021). Priorities and opportunities for palliative and end of life care in United Kingdom health policies: a national documentary analysis. BMC Palliative Care, 20, doi:1186/s12904-021-00802-6.
  4. Imison, C., Curry, N., Holder, H., Castle-Clarke, S., Nimmons, D., Appleby, J., Thorlby, R., & Lombardo, S. (2017). Shifting the balance of care: Great Expectations. Research Report. Nuffield Trust.
  5. Sarmento, V.P., Gysels, M., Higginson, I.J., & Gomes, B. (2017). Home palliative care works: but how? A meta-ethnography of the experiences of patients and family caregivers. BMJ Support Palliat Care, 4, 390-403, doi:10.1136/bmjspcare-2016-001141.
  6. Zimmermann, C., Swami, N., Krzyzanowska, M., Hannon, B., Leighl, N., Oza, A., et al. (2014). Early palliative care for patients with advanced cancer: a cluster randomised controlled trial. Lancet, 383, 1721–30, doi:10.1016/S0140-6736(13)62416-2.

Read more about the authors…

Josephine Jewiss is a midwife at Chelsea and Westminster Hospital, London, United Kingdom Follow Josephine on Twitter @JewissJosie

Natasha Joseph is a grassroot health advocate having graduated from King’s College London in Global Health & Social Medicine and currently reading Population Health Science (Public Health) MPhil at the University of Cambridge. Connect with Natasha on LinkedIn and Twitter @_NatashaJoseph

Rachel Cripps is a Research & Projects Coordination Assistant, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, United Kingdom.  Follow Rachel on Twitter @RachelLouCripps 

Catherine Evans is Professor of Palliative Care and Honorary Nurse Consultant in Palliative Care, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, United KingdomShe is joint PI on the programme EMBED-Care – Empowering Better End of life Dementia Care. Follow Catherine on Twitter @CatherineJanee1 

Katherine Sleeman is Laing Galazka Chair in Palliative Care and Honorary consultant in palliative medicine, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, King’s College London, United Kingdom. She is academic lead on the Marie Curie funded Better End of Life Programme. Follow Katherine on Twitter  @kesleeman

Links

  • Follow the Cicely Saunders Institute @CSI_KCL
  • Read more posts from Prof Katherine Sleeman and colleagues at the Cicely Saunders Institute on the EAPC blog.

 

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