Valuing life and evaluating suffering in infants with life-limiting illness

Abstract

In this paper, we explore three separate questions that are relevant to assessing the prudential value of life in infants with severe life-limiting illness. First, what is the value or disvalue of a short life? Is it in the interests of a child to save her life if she will nevertheless die in infancy or very early childhood? Second, how does profound cognitive impairment affect the balance of positives and negatives in a child’s future life? Third, if the life of a child with life-limiting illness is prolonged, how much suffering will she experience and can any of it be alleviated? Is there a risk that negative experiences for such a child (suffering) will remain despite the provision of palliative care? We argue that both the subjective and objective components of well-being for children could be greatly reduced if they are anticipated to have a short life that is affected by profound cognitive impairment. This does not mean that their overall well-being will be negative, but rather that there may be a higher risk of negative overall well-being if they are expected to experience pain, discomfort, or distress. Furthermore, we point to some of the practical limitations of therapies aimed at relieving suffering, such that there is a risk that suffering will go partially or completely unrelieved. Taken together, these considerations imply that some life-prolonging treatments are not in the best interests of infants with severe life-limiting illness.

Philosophical investigations into the essence of pediatric suffering

“…For Dominic Wilkinson and Amir Zayegh, the central question for Esther's parents and the clinicians caring for her is whether having her life prolonged by surgery is in Esther's best interests [17]. To answer this question, the authors seek to analyze two further questions: (1) What is the value or disvalue of a very short life?…”