The cost of dying: a mixed methods study to explore the costs of palliative care.

We will determine the total costs including how much it costs the health service and hospices, but also how much it may cost family members to provide care and support at home. Following this we will establish which patient groups require the greatest resources at the end of life, and whether there is equitable allocation of resources between different patients. Finally we will explore if costs of care at the end of life are related to important outcomes such as the quality of a persons’ death, or family satisfaction with care. We will use the findings from this study to help health service planners provide a more cost effective and equitable service, and crucially to ensure that services meet the needs of patients at the end of life and their families.

Project Overview

An almost two-fold increase in the number of people dying globally is predicted over the next 40 years. In the UK there is increasing concern about how to fund exponentially rising palliative and end of life care costs within the context of constrained health budgets. There are very little data available regarding the costs of palliative care. In 2011 an independent Palliative Care Funding Review was undertaken to underpin a new funding strategy by the Department of Health, the strategy identified “a stunning lack of good data surrounding costs for palliative care in England”.

The aim of this study is to determine resource utilisation and costs associated with providing care for patients in the last 6 months of life; to examine factors associated with these costs; and to explore outcomes related to the costs of care.

The mixed methods study will involve three phases of work.

Phase one: This phase will involve a systematic review of literature exploring the components of costs related to palliative care in the last 6 months of life, and will explore which approaches are used to measure these costs. This review complements our recent systematic review on informal costs of care (i.e. costs to the patient and their families) at the end of life (Gardiner, 2014).

Phase two: This phase builds on pilot work undertaken in New Zealand which identified appropriate and acceptable methods (Gardiner, 2015) and the nature of informal costs (Gott, 2015). This phase will collect empirical data on the costs of care for hospice and hospital patients in the last 6 months of life. Data will be collected on both formal costs (i.e. NHS and hospice costs) and informal costs (patient and family/carer costs) at the end of life. A protocol developed during pilot work will be used to collect resource utilisation data from multiple sources including hospital/hospice case notes, GP databases and family carers.

Phase three: This phase is a qualitative phase involving focus groups with key stakeholders to identify outcomes relevant to costs of caring. Up to five focus groups will be held with stakeholder groups. These will include clinicians involved in acute and community palliative care provision; bereaved family caregivers; and a service user group comprising patients with palliative care needs and bereaved family. During focus groups participants will be asked to consider results from phase one and two and to identify key outcomes with relevance to costs of care. Participants will also be asked to consider interventions and models of service delivery that could reduce the overall cost profile for patients in the last 6 months of life; make recommendations for supporting patients/families facing significant financial burden; and consider policy response to the financial burden of informal caregiving at the end of life.

The proposed study will benefit policymakers and commissioners through the provision of robust data with which to allocate resources. It will benefit patients with palliative care needs and their families through recommendations for improved financial support and more equitable service provision. It will benefit service providers by enhancing understanding of costs associated with palliative care, enabling improved organisation of services which meet the needs of patients.

Patient and Public Involvement (PPI)

In line with national guidance patient and public involvement (PPI) will be integral to all phases of the study. The Palliative Care Studies Advisory Group are a Sheffield based group of service users with experience of palliative care services. The group will contribute to the study by assisting in ethical approvals, discussing and prioritising emerging findings from the analysis, and directing dissemination activities. If you have experience of palliative care services as a patient, carer or family member and would be interested in joining the Palliative Care Studies Advisory Group and then please contact Clare Gardiner c.gardiner@sheffield.ac.uk, Tel: 0114 222 2038

PPI or ‘service user involvement’ is complex and challenging within the context of palliative care research, and no evidence based guidelines exist which support ethical and sensitive approaches to involving service users in palliative care research. A final phase of this research will be a student led project which will aim to address the following objectives (1) Evaluate the evidence base surrounding service user involvement in palliative care (2) Develop guidance for service user involvement in palliative care research (3) Evaluate the guidance and refine as required by the results.

Contact details

If you are interested in finding out more about this project please contact the Principal Investigator Dr Clare Gardiner c.gardiner@sheffield.ac.uk, Tel: 0114 222 2038