Patients and families urge palliative care to prioritise the financial cost of caregiving; reporting from the Palliative and End of life care Priority Setting Partnership (PeolcPSP); a national survey


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Despina Anagnostou1,Jordan VanGodwin1,Anthony Byrne1,Annmarie Nelson1
1Cardiff University

Abstract

Background

Palliative care is an under researched area. Less than 7% of total spent on cancer research is spent for cancer- related Palliative Care. A Palliative and End of life Care Priority Setting Partnership (PeolcPSP) set up by Marie Curie, conducted a national survey, asking patients, carers and clinicians to set research priorities for palliative and end of life care. Financial implications of informal caregiving was one of the emergent themes.

Method

A supplementary analysis of the Palliative and End of Life care Priority Setting Partnership' national survey, by performing thematic analysis on the free-text responses. Results related to the  financial costs of informal caregiving are the current focus.

Results

They public survey received 1,403 responses. 118 participants (8,41%) provided free-text responses in relation to economic costs and financial support for patients and their families. Participants discussed the financial challenges in looking after a dying family member at home. They argued for a need of financial support for both patients and their families and discussed challenges of accessing the existing support. Equipment and facilities for patients' homes, carer's allowance, employment benefit, after death support, lack of guidance and co-ordination of financial resources, and issues of equity across diseases and geographical areas were the main concerns presented by all participants.The participants confirmed a link between financial constraints and place of care and death, suggesting that palliative care at home is at least partially funded by the patient and the family and hence it might not be viable for individuals who lack personal resources. 

Conclusion

Economic burden for the family has a significant impact on the quality of palliative care. Given the policy initiatives to move provision of palliative care from hospital to community settings, the costs of informal caregiving need to be urgently uderstood and considered in economic evaluations of palliative care services.