Palliative care for extremely premature infants and their families

Abstract

Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining goals of care and making decisions about life support. For both the extremely premature infant who dies soon after birth and the extremely premature infant who experiences multiple complications over weeks and months in the neonatal intensive care unit, palliative care can maintain a focus on infant comfort and family support. This article highlights the ways in which palliative care can be incorporated into intensive care for all critically ill infants.

Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant

“…Perinatal palliative care has been recommended for unborn infants who have a life-limiting or -threatening condition (Hoeldtke & Calhoun, 2001; Leuthner, 2004; Sumner et al, 2006; Munson & Leuthner, 2007), including extreme prematurity (Leuthner, 2004; Munson & Leuthner, 2007; Boss, 2010). Perinatal palliative care is an approach to care that aims to provide family-centered care to alleviate all types of suffering, including physical, emotional, and spiritual (Sumner et al, 2006).…”

Paediatric palliative care: recommendations for treatment of symptoms in the Netherlands

“…The reason that palliative care for premature infants was excluded from this study, is that palliative care for this group of children takes place in a different setting (mainly neonatal intensive care units), with different symptoms and different symptom management. [ 6 ]. Resuscitation guidelines were excluded because they generally on unexpected, acute events, while the focus of our study was planned decision-making and palliative care in paediatric life threatening conditions.…”

Ethical decision-making regarding infant viability: A discussion

“…This is in order to ensure competent understanding of the predicted outcomes, to prepare the parents for the delivery of a premature infant and make them aware that their baby may require immediate lifesaving treatment. 3,26 This is also an opportunity for clinicians to ascertain parents’ views on whether they want treatment to be provided and involves informing them that depending on the condition of the baby when it is born, it may not be possible or advisable to provide treatment. Winyard 6 criticises decision-making responsibility being placed upon parents.…”

“…There are many reasons why babies are born prematurely; however, in most cases, labour starts naturally, 27 unexpectedly and very quickly. 26 Donohue et al 28 highlight that the time from the start of labour to the birth of a premature baby is usually less than 72 hours this means that by the time the woman arrives at the hospital, she is already in established labour. This presents barriers to an effective discussion taking place, as compromise to the time available may mean clinicians are unable to provide the necessary depth of information required to allow quality informed consent to take place.…”

“…Neonates not only have limited ability to express their feelings, meaning they are unable to apply their own perspectives, but also they are too immature to allow recognised measures to be used 3,38 Due to the high chance of surviving premature babies being affected by long-term disabilities, 26 it is also difficult to determine long-term quality of life, as the extent of a child's disabilities may not become evident until months following discharge, when they may fail to meet their developmental milestones. 3,26,38 With this in mind, when deciding whether to provide lifesaving treatment, Boss et al 38 advise that premature infants' quality of life should be measured in terms of their future family life. This should include information about parents' perceptions of how they plan to cope with a potentially severely disabled child holding significant value.…”