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Arch Hellen Med, 33(Supplement 1), 2016, 47-53


The answer of society. When one cannot serve hirself, then there is no future:
narratives of caregivers of incurably ill

K. Gatsiou,1 I. Dimoliatis2
1Psychiatric Clinic, General Hospital of Corfu, Greece,
2Unit of Quality of Life and Death, Department of Hygiene and Epidemiology, Faculty of Medicine, School of Health Sciences, University of Ioannina, Ioannina, Greece

OBJECTIVE The problem faced by the researcher when seeking the opinion of society is that its members are unaware of what exactly we are talking about when we ask them when should we die (WSWD). It is not something that can be taught in words. Informed opinion can be taken by those who have had the opportunity to reflect upon their own long experience. The point of view of the caregivers who have long personal experience is presented.

METHOD Fifteen caregivers, fourteen women and one man, aged 23–74 years (57 in average), caring incurably ill relatives for 0.3–20 years (8 in average), narrate for 10 to 338 minutes (91 in average) their experiences, "those experiences that they had not dared to admit even to themselves" (qualitative study). At the end, they were invited to answer three questions, if they had not already done so while narrating: When should the care-receiver die or have died? If you were at his/her place, when should you die? When should a human being die?

RESULTS More than two thirds of these caregivers (11/15, 73%) answered that their care-receivers die later than it should (postmature death), 2/15 (13%) that the time of death was the right one (mature death), and 13% that their care-receivers died earlier than it should (premature death). Almost all caregivers (only one stated "don't know what I would do") would prefer to die earlier than their care-receivers. Finally, their definitions of a mature death include "when there is no future" (43%), "when one cannot serve himself" (43%), "when one cannot think rationally" (7%), and "when one ceases to rejoice" (7%).

CONCLUSION The non-self-handling and when there is no future are considered as mature death criteria by the experientially informed long-term caregivers of incurably ill relatives, more than two thirds of which consider that their care-receivers die after their right time (postmature death). It is assumed that statistically representative sample of caregivers from across the country would give the same answers; however, well designed quantitative study is required for this purpose.

Key words: Caregiver, Euthanasia, Good death, Future, Premature / mature / postmature death, Self-handling, When should we die (WSWD).

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