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Quantitative study—other
Costs incurred by family caregivers of patients with palliative care needs
  1. Ronda G Hughes
  1. Marquette University, Milwaukee, Wisconsin, USA
  1. Correspondence to : Dr Ronda G Hughes, Marquette University, 530 N. 16th Street, Milwaukee, WI 53233, USA; Ronda.Hughes{at}

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Implications for practice and research

  • Healthcare providers should consider the range and significance of unsubsidised costs incurred by family caregivers of patients with palliative care needs.

  • Future research needs to describe the extent and variation of costs borne by family caregivers of palliative care patients.


With increasing healthcare costs, there has been a shift from providing palliative and end of life care from hospital to community settings. This shift has implications for community healthcare providers and organisations, and family caregivers. While previous research findings have indicated that this shift has significant financial burden on family caregivers, only one study quantified the costs of caregiving for family caregivers. Understanding the cost of palliative and end of life care needs to include the costs across settings and those of family caregivers.


This study described the experiences and financial impact of caring for dying family members at home. The study used semistructured interviews of caregivers that were currently or had recently cared for a person near the end of their life with palliative care needs. The sample of 30 caregivers were diverse in age, gender and ethnicity, and included under-represented populations such as the Māori. The interviews were conducted in homes, hospitals, cafés, or by telephone and focused on the experiences of caring and financial costs. Qualitative analysis was used to categorise responses and the narrative gerontology framework1 (including personal, interpersonal, and sociocultural dimensions of experience).


Family caregivers incur direct and indirect costs associated with caring for dying family members with palliative care needs. The impact of the financial costs incurred by caregiving had more of an impact among caregivers with lower or fewer financial resources and social support. The impact of efforts to meet the palliative care needs was perceived as higher as death approached. Personal, interpersonal, sociocultural and structural costs of caring were incurred by one primary caregiver and multiple family members. Availability of government assistance was limited and unclear.


In focusing on the financial impact of caring for the dying, this study and others have highlighted and given greater understanding to the burden and many of the uncompensated costs for family caregivers.2 Utilising interviews to gather this information is foundational in an area where data and information are not readily available. With the progressive deterioration of dying, there is an increasing dependency on daily activities and needs for family members or paid caregivers; a cost that is difficult to fully quantify and only recently recognised as burdensome for families and family caregivers.

The cost of meeting the supportive needs of dying patients involved with end of life/palliative care can be significant for society and families. It is not clear who provides and pays the costs associated with caring for the dying at home. While palliative care can decrease overall medical costs, it may have no impact on informal care costs rendered by family caregivers, which can be higher.3

Community/home palliative care can improve patient satisfaction and decrease the cost of care,4 although exactly what palliative care entails and how palliative care can be accessed remains relatively unknown among family caregivers.5 Shifting the cost of care to families and family caregivers may decrease societal costs, however, the long-term impact of these unplanned and often unaffordable costs incurred will eventually impact society.


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  • Competing interests None declared.

  • Provenance and peer review Commissioned; internally peer reviewed.

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