Abstract
ObjectivesWe 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.MethodsIn 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.ResultsIn 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.ConclusionOur 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.
Highlights
The End of Life (EoL) period is becoming recognized as a distinct phase of human existence, giving rise to new social, medical, legal and existential concerns
Advanced Dementia was perceived to be associated with a lower quality of life than Physical Disability, which is consistent with the literature that reports that mental disabilities, such as depression, are perceived as having a higher negative impact on daily functioning than physical disabilities [49]
Either through euthanasia or suicide, was more likely to be preferred in the Advanced Dementia scenario than in cases of Physical Disability, presumably because of the lower quality of life (QoL) associated with dementia
Summary
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
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