Abstract
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care.
Highlights
Intensive care can restore a majority of babies to normality; even where that is not possible, it has the potential to enable a child to live for many years or decades
It is understandable that for healthcare professionals caring for neonates, redirecting from intensive to palliative care can feel like concession to hopelessness and perhaps even an admission of failure
The expected outcomes are different, intensive care and palliative care are underpinned by the same compassion for a baby and her family and by the same commitment to improve the quality of their existence, up to the moment of the baby’s death
Summary
The ideas of ‘intensive’ and ‘palliative’ care can seem diametrically opposed. The objective of intensive care is cure. Intensive care can restore a majority of babies to normality; even where that is not possible, it has the potential to enable a child to live for many years or decades. It is understandable that for healthcare professionals caring for neonates, redirecting from intensive to palliative care can feel like concession to hopelessness and perhaps even an admission of failure. The aim of this chapter is to show that seen from an ethical perspective, the goals of intensive care and palliative care are not as remote from one another as they might appear. The expected outcomes are different, intensive care and palliative care are underpinned by the same compassion for a baby and her family and by the same commitment to improve the quality of their existence, up to (and including) the moment of the baby’s death.
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