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• W3137396246 abstract "In their sensitive account of suffering in end-of-life decision-making,1 Professor Isaacs and Ms Preisz are right to assert that children do not exist in isolation, but rather that the positive value in their lives is derived from the web of relations they exist within. Despite this network of relations being a fundamental source of value for the individual, the individual remains the fundamental unit to which rights may accrue. In their prudent reluctance to overrule parents in life and death decisions about children's suffering, the authors give undue weight to the parents' own suffering arising from their children's ongoing illness and survival. Consider John and Jane, two children with the same illness. After careful consideration, a small majority of physicians argue for ongoing treatment and therefore survival for both John and Jane, but the burdens of ongoing treatment and survival are considered significantly more onerous by John's parents than Jane's parents. Per the authors' reasoning, where the parent's perceptions of the burdens of treatment and survival are taken into account as one of a number of variables in the burdens versus benefits calculus, it is conceivable that the decision to ultimately terminate John's ongoing treatment may turn on the burdensomeness to his parents of his treatment and survival. If we assume that John and Jane have an otherwise equal claim to continued existence, then it would seem a perverse outcome that John's claim is overruled by his having, through no fault of his own, parents for whom the burdens of his own ongoing illness and survival are more onerous. Furthermore, just as the burdens of intensive care may be ameliorated by for example analgesia, sedation, and other non-pharmacological means of mitigating suffering, so may the burdens of the child's ongoing illness and survival on their family be ameliorated. The particular family unit in which we imagine a child might benefit from love and affection is itself historically contingent. Children may thrive in other arrangements, for example, living with extended family or kinship networks, or in foster-care or adoption arrangements. We can also imagine a society where the almost superhuman expectations placed on parents of children with profound neuro-disability are recognised for what they are, and new models of care, appropriately resourced, are directed towards these families to ease the burdens of care, and tip the balance of this tragic calculus in favour of survival." @default.
• W3137396246 created "2021-03-29" @default.
• W3137396246 creator A5027182150 @default.
• W3137396246 date "2021-03-24" @default.
• W3137396246 modified "2023-10-18" @default.
• W3137396246 title "SUFFERING AND END‐OF‐LIFE DECISION MAKING" @default.
• W3137396246 cites W3129368887 @default.
• W3137396246 doi "https://doi.org/10.1111/jpc.15461" @default.
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