The field of neonatal and perinatal medicine has been affected by the general interest shown in PC. The first references in the literature referring to the concept as such date to 1982 [
11,
38], although its origins actually go back to the reaction to therapeutic obstination with premature births at the limit of viability in the early 1970s [
39]. However, it should be pointed out that very few clinical studies can be found that can provide empirical data on PC in the perinatal setting. About half of the 101 articles identified were comments/reflections, and less than a third could be considered to be clinical contributions or studies, of which half were simply case reports. Of the clinical contributions, five were classified as primarily qualitative studies [
31,
40-
43], although in some other articles qualitative techniques were used. It was finally decided to classify these five studies, despite the fact that their main aim was not to study PC but to analyse the decision-making process of couples faced with the diagnosis of an unhealthy or non-viable foetus. In contrast, three other qualitative studies by Swanson-Kauffman that focused on the experience of miscarriage and the caring needs of women who miscarry were not included in the classification.
Interest in neonatal/perinatal PC seems to be greater in the USA (followed by Europe) than in other parts of the world, although this distribution may reflect a publishing bias that is influenced by the databases consulted and the lack of clinical literature from some parts of the world, such as Africa. However, it should be borne in mind that sociological and clinical practice differences may imply underlying different meanings regarding PC and end of life issues.
This study has certain limitations, the greatest of which is a lack of evidence-based empirical studies to identify the best model for perinatal PC. Much of the information has not been published in the traditional literature; rather, it is compiled in reports and protocols of clinical practice, which are not immediately available (except a few which are available online [
44]) and could introduce some level of publication bias. Given the nature of the articles and the lack of quantitative results, we did a consensus analysis which would allow us to summarize the evolution of PC.
The qualitative evaluation of these articles seems to show an evolution on PPC over time that includes some of the aspects that have also been developed in newborn care. In addition, the care provided has also been enriched by input from palliative care units for adults and children. So the initial care provided for the more physical aspects such as pain relief and comfort (in a multisensorial context) is immediately supplemented with the importance of maternal bonding and other emotional aspects [
45]. In this regard, the hospice model, as the precursor/pioneer of PC, has made a considerable contribution. Hospices emerged as a result of the work by Saunders with adults in the 1960s [
9] and were soon advocated for children by Saunders herself [
10] and then adapted for neonates by Whitfield [
11]. Experience has also shown that general care designed not only to minimise pain in neonates but also to make them more comfortable, promote individualised developmental care [
6] and facilitate bonding with the mother can also be of great relevance [
7,
8]. The importance of family participation in the NICU, which found expression in the concept of "family-centered care" in the 1960s and 1970s [
7,
46] also could have some influence on neonatal PC [
1,
19,
33,
36,
37,
47]. Although PC emerged in close combination with the NICUs [
47], to encourage incorporation of the process in the family environment, the possibility of PC taking place in the home (at least on a temporary basis) was considered [
32,
48]. This option, however, would depend heavily on the professional support that could be provided and the changing circumstances of the patient and the family [
45].
Recently, attention has been drawn to the need for "integrative care" [
14]. Using this term, Milstein highlights the importance of introducing healing and palliation (when indicated) alongside curative measures as soon as any diagnosis, especially a critical one, is made as an integrative paradigm of care. He also points out that because loss can be experienced in many conditions, even in the absence of death, bereavement is represented as an on-going, continual process throughout a disease process.
In recent years, particular emphasis has been put on the importance of initiating PC early, even antenatally [
1,
13,
33,
37]. Three general areas of implementation have been described [
49]: foetus/neonates with lethal congenital anomalies, neonates that are previable or at the limits of viability, and neonates that do not respond to aggressive medical management.
An excellent synthesis of the design and implementation of a programme of this sort [
11,
13,
37,
50] can be found in the document drawn up by the British Association of Perinatal Medicine, coordinated by Murdoch and entitled "Framework for clinical practice in perinatal medicine". It divides PC planning into eight stages: a) eligibility of foetus or baby for palliative care; b) family care (including psychological support, creating memories, support of spiritual/personal belief and social support); c) communication and documentation; and d) flexible parallel care planning. The next four stages represent points of care transition: e) pre-birth care; f) transition from active postnatal care to supportive care; g) end-of-life care; and h) post end-of-life care [
51].
Early and/or antenatal palliative care
Initiating early PC in adult cancer patients has recently shown benefits not only in terms of quality of life but also in improving expected outcomes and even survival [
52]. In perinatal care, all this does not necessarily justify early initiation, which in this case would involve preparing/initiating the programme antenatally. Recently, however, some have called attention to the importance of this early integrative care [
1,
13,
14]. Early initiation (starting from diagnosis) may make a great deal of sense to those parents who must cope with a tragic prenatal diagnosis. Although many institutions are able to provide this sort of care, in some cases it has been explicitly organised in the form of perinatal hospices or PPC programs [
1,
13]. They have given special attention not only to the curative needs of the fetus and the mother (e.g. clinical complications in the pregnancy) but also to psychological, spiritual and social needs of the whole family. All these actions provided in the right time with coordination amongst all health professional implicated. A secondary analysis of the bibliography identified a subset of 27 articles that make explicit mention of this concept. The geographical distribution and the topics covered were very similar to those of the whole sample of articles. Once again, it is noteworthy that most of the articles can be classified as comments/reflections and that only 30% (8 articles) could be considered to be clinical studies. Of these, three were case reports, one was a qualitative study [
31] and four are the results of initiating programmes of this sort [
1,
28-
30]. These programmes were implemented in five different centres, four of which were in different states in the USA and one of which, from the United Kingdom. According to the data provided (summarised in Table ) and in the context of the PPC programme, the percentage of couples who decided to continue with the pregnancy despite an ominous prenatal diagnosis ranged from approximately 40% [
30] to 85% [
1]. These programmes involved 124 pregnancies and there was no maternal morbidity. Those parents who chose this model of care gave positive feedback about their decision and the care provided. The sample probably presents biases, because the parents' choice of centre was surely influenced by their
a priori convictions. Nevertheless, the data highlights that this model of PPC is viable and that many families request it and are grateful for it. Besides the quality of clinical care given to the foetus/neonate, this fact might suggest that, by choosing PPC, parents do not have to cope with the consequences of voluntarily terminating the pregnancy [
31,
53]. Parents and relatives would be able to cope better with bereavement because they might prepare for the death of the neonate and, even accompany the baby to his/her natural end [
29,
54]. In any case, when trying to make a decision after a problem with the foetus has been identified [
42], parents and patients should have all the appropriate information and support about possible treatments and palliative care.
1,2 Ana Martín-Ancel,3 Darío Ortigoza-Escobar,3 Joaquín Escribano,4 and Josep Argemi2
publication history
