The term “Neonatology” was defined by Alexandre Schaffer as the art and science of diagnosing and treating disorders of the newborn (NB). Every year 15 million premature infants are born and, according to data published in 2021 by the National Institute of Statistics, the prematurity rate in Portugal is 7.51%. Today, approximately 90% of lethal anomalies are detected in the first or second trimester of pregnancy, and the main causes of perinatal morbidity and mortality are genetic and chromosomal alterations and chromopathy.
Technological advances combined with scientific knowledge have allowed, in recent years, the survival of newborns with increasingly earlier gestational ages, as well as those with severe, complex, or terminal pathologies. Therefore, the universal inclusion of Paediatric Palliative Care (PPC) in Neonatology is essential to improve the quality of life of these patients.
Palliative care (PC) takes a holistic view of the patient and his or her family and is based on a similar approach for all ages, namely: relief of the patient’s pain and suffering. It is based on a similar approach for all ages, namely: relief of suffering, support at all stages of illness, individualised.
PCs started their activity with the adult population, but in recent decades, with the improvement of child mortality and morbidity, the number of children with complex or severe chronic diseases has increased.
Consequently, it became evident that the care provided to this group was not sufficient, and palliative care was extended to the paediatric age group and, more recently, to neonatology. According to the literature on PPC, we can classify neonates into 3. groups:
(1) NBs with progressive diseases, with no curative option, in which treatment is palliative from the moment of diagnosis;
(2) NBs in whom curative treatment is not a solution to the problem or in whom death is foreseeable, but who remain in long and complex hospitalisations;
(3) NBs with irreversible, non-progressive disease and severe disability
(4) NBs in CPP are considered a vulnerable population, in the sense that they are totally dependent on a third party and on the possibility of imminent death.
The primary goal of PC in neonatology is to provide a humanised and compassionate approach to the care of all foetuses or NBs with life-limiting or life-threatening illnesses and their families, from diagnosis to death and bereavement.
In my view, neonatal palliative care (NPC) differs from other forms of care, as it can be initiated during pregnancy or from birth, with parents being one of the crucial elements of action. In prenatal cases, the approach differs because our subject is a foetus, and as such, the focus is on the parents and, depending on the situation, on future possibilities. The absence of an NPC at this crucial stage promotes a feeling of helplessness in the parents at such a vulnerable time, when the decisions to be taken may depend on the clarifications given, as well as the support and accompaniment of the team.
For this reason, information should be given in a clear, succinct and enlightening manner, and should be agreed upon by the different members of the team. A characteristic of neonatal patients is that most of them are in intensive care units, which can be a somewhat antagonistic place to idealised palliative care, so it is essential that these units adopt criteria for the transition from intensive care to palliative care, as well as having defined criteria for the application of the do-not-resuscitate order. In this sense, it is essential that the planning of NPCs takes into account the training of competent professionals in the field, the necessary material and technical resources, as well as the choice of the most appropriate location. The location depends on how long the RN is expected to live and should be related to proximity to home, community resources, and parental wishes.
In the case of NPC, communication must be ongoing and consistent among team members, associated with good coordination between antenatal care and neonatology. This is one of the important aspects of care. The main idea of palliative care in neonatology is that the doctor must inform them of the whole situation, be open to possible future clarifications, and above all, reinforce the idea that there is no abandonment of the newborn and the family, but a change in the objectives of care.
Thus, the family should be informed from the beginning, if possible, about the diagnosis, the evolution of the disease, the prognosis, as well as receive all information about therapeutic actions/alternatives, i.e. abortion, continuation of pregnancy and palliative care. The aim is that the parents are gradually included in the definition of the most appropriate care plan for their NB, as well as the place of delivery, the measures taken and the care available, so that the best care can be provided, ensuring the humanisation of care and the fulfilment of the wishes expressed. In addition, parental involvement strengthens the feeling of parental competence, attachment, and the organisation of memories.
Another important aspect in the existence of PPC is adequate symptomatic control and avoidance of unnecessary invasive techniques. It is essential to weigh the benefits and adverse effects of treatments in order to provide the best possible quality of life for the NB. Although pain used to be a neglected symptom in neonatology, it has become one of the most important and frequent symptoms to manage.
However, even with pain scales, it can sometimes be difficult to classify pain, especially the more severe the situation is, the less possible it is to express pain through facial expressions or body movements. This is why it is crucial to have trained teams capable of recognising signs of pain in time to minimize suffering. Another aspect is that medication in CPN is scarce in terms of scientific evidence, so it is essential to anticipate the NB’s symptoms, assess the best course of action and when to take it, and evaluate the outcome of the approach adopted.
Another factor to keep in mind, especially in CPN, since the NB has no decision-making capacity, is that decisions made throughout the process are the responsibility of third parties and should be in line with the parents’ wishes, whenever possible. If they go against the parents’ wishes, clarification of the situation and the decisions to be made should be reinforced. In addition, parents should be informed of any change or discontinuation of life-sustaining therapy, so that they can decide whether they wish to be present and whether they would like to spend some time alone with their child or if they would prefer to be cuddled.
Last but not least, NPCs continue after the death and during the bereavement phase, supporting them and checking their needs. It is also important to inform parents about future pregnancies, so the work of an NPC team should be carried out as early as possible.
The NB has an added specificity, as already mentioned, and it is therefore essential to universalise palliative care. Despite the efforts already made, and like many other countries, Portugal still lacks multidisciplinary teams with specific training in PPC, and with the capacity to provide a timely and adequate response in terms of diagnosis, evolution, follow-up and prognosis.
This aricle was published with permission form Notas Paliativas www.paliativossinfronteras.org.
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