The right of premature neonates to palliative care

Abstract

This thesis discusses the particular needs of premature neonates as a select group of patients, focusing on their right to palliative care. The treatment of premature neonates at the limits of viability remains a challenge in neonatal medicine. This is often complicated by other controversial issues related to the status of the neonate, such as the issue of personhood and its translation into law, which can determine access to lifesaving care or neonatal palliative care. These issues are especially relevant in the cases where the premature neonate is born with some form of disability. Furthermore, the discussion includes neonatal euthanasia, as well as issues related to quality of life. The premature neonate is born in a hostile world that may deny the infant his or her right to life and care, justifying infanticide on grounds of compassion in borderline cases and disability. This thesis highlights the prevailing relativistic world view today that is unfortunately obsessed with the perfect in life, which requires instant gratification and denies suffering as part of life. In this world view, commodification of children is common, as is rejection of the neonate who does not measure up to the required standard. The last part of the thesis discusses neonatal end of life care, including pain and symptom management as part of neonatal palliative care. The realm of responsibility for the neonate, especially when the treating physicians and the parents disagree, is discussed, together with factors like beneficience tension and the use of narrative which could help breach the gaps in communication in palliative care consultations. Neonatal palliative care encompasses the holistic treatment of the premature infant and supports the whole family through death and bereavement. The appreciation of life, even a short neonatal life, can be a life changing experience for the whole family.