Introduction End of life care (EoLC) concerns the needs of both patients and those close to them. Current methods of economic evaluation typically focus on the patient and, only infrequently, the health of the carer. There are strong arguments that impacts on those close to the patient should also be included within economic evaluation. It is therefore important to know who, and how many people may be eligible for inclusion within the evaluation.
Aim(s) and method(s) The aim was to examine the scale of decedents' social networks and explore factors that impact closeness at the end of life (EoL). Hierarchical mapping alongside in-depth interviews was used to examine the networks. Interviews took place with the bereaved, and those with somebody ‘close’ to them receiving EoLC. In total, the networks of 24 decedents were explored.
Results The median number of individuals included within the close-person network at EoL was eight. Over 60% of the hierarchical maps included individuals who were not family members and many included those who were not geographically close. Family size and death trajectory appeared to play key roles in determining the size of network at the EoL.
Conclusion(s) The hierarchical mapping task was a quick and easy method of establishing the scale of close-person networks. Results suggest that if economists are to assess the full (true) impact of EoLC, assessment will need to extend beyond those providing informal care. This work aligns with the normative stance that evaluation of EoLC should not be limited solely to health outcomes.
- Supportive care
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