After providing end of life care to relatives, what care options do family caregivers prefer for themselves?

Abstract

Objectives: We examined how caregivers who had cared for a relative at end of life (EoL) wished to be cared for in the event that they experienced advanced dementia or physical disability in the future, and what factors influenced their preferences for EoL care.

Methods: In this mixed-methods study, 83 participants, recruited from multiple sources in Israel, were interviewed concerning socio-demographic factors, health status, past experience with EoL, preference for extension of life vs. quality of life (QoL), willingness to be dependent on others, and preferences for EoL care.

Results: In case of advanced dementia, 58% preferred euthanasia or suicide; around a third chose those for physical disability. Care by family members was the least desired form of care in the advanced dementia scenario, although more desirable than institutional care in the physical disability scenario. QoL was rated as the highest factor impacting preferences for EoL care. Men demonstrated a higher preference than women for extension of life over QoL.

Conclusion: Our study points to the need for society to consider solutions to the request of participants to reject the type of EoL experienced by their relatives. Those solutions include investing in improving the quality of life at the end of life, and offering alternatives such as euthanasia, which a large proportion of our participants found ethically and medically appropriate within the current system of care in the event of severe physical disability, and more so in the event of advanced dementia.

Fig 1. The process of participant recruitment.

Fig 2. Structural Equation Modelling displaying the relationships between background variables, internal processes and care preferences for EoL care.