A specialist PPC team can provide support to families navigating the challenging uncertainty of a life-threatening antenatal diagnosis, enabling them to make plans in anticipation of a range of possible outcomes. Parents who have received antenatal palliative care report positive experiences and describe the value of compassion from healthcare professionals, their babies being treated ‘as a person and not as a diagnosis’ and finding ways to honour their babies [27,28,29]. For some families the time they get to spend with their baby is very short, and extremely precious, and perinatal palliative care can help to ensure that families have no regrets about how they spend that time [30].

In this retrospective review we have demonstrated a striking increase in the number of referrals to PPC over the last 14 years from 1 to 2 per year to more than 30 per year. This likely reflects an increasing awareness of the role for specialist perinatal palliative care support [31]. The overall number of referrals, however, remains small and potentially represents only a small fraction of the eligible families. We do not have accurate data for the number of life-limiting conditions diagnosed in pregnancy each year in the UK but we do know that the live birth rate for London is approximately 120,000 live births each year [32] and that the birth prevalence for the 11 auditable conditions screened under the Fetal Anomaly Screening Programme (including anencephaly, HLHS, bilateral renal agenesis, lethal skeletal dysplasias and Trisomy 13 & 18) is 77 per 10,000 total births (live births and stillbirths) for London and the South East [6]. Even with conservative estimates this suggests that the number of life-limiting antenatal diagnoses each year in our referral region is likely to be in the hundreds. It may be that a number of these families are supported locally by fetal medicine and neonatal teams. Whilst we do not have this data for the UK context, a French study of prenatal decision-making processes found that it was very rare to have a palliative care specialist present in prenatal discussions (this occurred in only 2.8% of cases where perinatal palliative care was considered) [22].

The largest number of referrals came in the period between 21 and 30 weeks. This is likely to represent the fact that a number of congenital anomalies are first suspected at the fetal anomaly scan, which takes place at around 20 weeks gestation [6]. There were however a significant number of referrals in later gestation; 79 of the 159 referrals were received after 30 weeks. In practice referral to PPC usually only occurs if a family has elected to continue with the pregnancy, but there may arguably be a role for PPC support whilst parents remain in a decision-making phase or where there remains uncertainty around the baby’s prognosis. The significant variability observed in timing of referrals, and whether patients are referred at all, may indicate a need for clearer guidance.

As one of the largest published cohorts of antenatal referrals to PPC, the spectrum of conditions referred is also potentially informative. For example, we found a large number of referrals for fetuses with cardiac disease in our cohort (n = 46). From 2020 onwards it has been the policy of our fetal cardiology team to refer all single ventricle patients to PPC. However even prior to this policy, the majority of referrals involved diagnoses of congenital heart disease or cardiac anomalies associated with features of Trisomy 13 or Trisomy 18, all of which are reviewed in fetal cardiology clinic. Our population may be somewhat unique given the presence of three paediatric cardiac centres in the London region, but the large number of antenatal referrals with cardiac disease nevertheless points to an important role for joint working between fetal cardiology and PPC teams in the future.

Within this study, 30 of the referrals did not meet the PPC team before birth and in most cases, this was because the baby either died in utero or the referral was received late in pregnancy and the baby delivered before a first meeting could be arranged. In 2 cases, it was documented that the family declined antenatal input from PPC. This highlights the importance of equipping all healthcare professionals working in antenatal care with foundational knowledge in palliative care and the communication skills necessary to handle these sensitive consultations.

Approximately half of the cases who were met by the PPC team had a personalised SMP prepared (60/129) for the baby before birth which gave guidance on how to manage potentially distressing symptoms such as pain, breathlessness and excessive secretions. These plans include suggestions for symptom management using non-pharmacological techniques as well as recommended doses for medications on a dose per kg basis until a birth weight is available. Our anecdotal experience is that medical teams value having access to SMPs in advance of a baby’s birth and that they can be a useful basis for discussion with parents around what symptoms they may expect to see in their baby. There is however an important lack of data in the literature around the prevalence of symptoms early after delivery and the value of SMPs in perinatal palliative care, which warrants further attention.

Only a very small number of babies in this cohort died at home (n = 10) or at a hospice (n = 6) and the largest number of babies died in hospital (n = 72). Those children who died at home tended to be older, with no babies who died at less than 48 hours old making it home. Whilst we do not have data on parental preference for place of death for these cases, there are recognised barriers to both offering and achieving a choice of place of death for seriously ill neonates [33]. Further research would be helpful to address whether choice of place of death could be more readily explored during the advance care planning process. In our study 28/159 babies died within 24 hours suggesting that in specific cases where the risk of early postnatal demise is particularly high, parental counselling around preferred place of death may need to take this into account.

A large number of babies (48/159) in our cohort died either in utero or during delivery which is reflective of the liveborn rate observed in previous studies (Table 1). Not knowing whether a fetus will survive to birth or not can be immensely difficult for both families and health care professionals and the palliative care team may play a role in navigating this space of uncertainty. The process of planning a baby’s management after birth can be supportive and therapeutic in and of itself, even if the baby does not survive to the point of delivery [34].

There was a large group of surviving babies in our cohort (n = 30). Aside from one child with Trisomy 18 who was 8 years old at the time of this study and one child with arthrogryposis (5 years old) these surviving babies all fell into two categories; either congenital heart disease (including Hypoplastic Left Heart Syndrome) or severe Central Nervous System abnormalities (including holoprosencephaly). This points to the important role that palliative care teams can play in ensuring that parallel planning takes place for these families. Parallel planning - planning for life while also planning for deterioration or death [35] - allows families to be prepared for the worst possible outcome but also simultaneously counselled about plans for if their baby survives. Indeed, it can sometimes be incredibly difficult for families to adjust to the reality of bringing their baby home if they have not been told about the possibility of their baby surviving. In these cases, it is also vital that appropriate expertise is sought from the relevant specialists, such as fetal cardiologists and neurosurgeons. For some of these children, palliative care will be offered alongside curative treatment, or treatment aimed at significantly prolonging life.

Antenatal counselling and support is provided by large multi-disciplinary teams, which include midwives, fetal medicine specialists, obstetricians, neonatologists and paediatric sub-specialists, and equipping all members of the team with the confidence to deliver elements of PPC is important. Professionals working in fetal medicine and paediatrics have themselves identified the need for integrated PPC services that take a multi-professional approach and which incorporate education and training for all health care professionals involved [36, 37].

Finally, as prenatal imaging techniques and genetic screening continue to improve, establishing robust provision of antenatal palliative care will become ever more important as more families face increasingly complex decisions. Importantly, NICE identified perinatal palliative care as one of five key research recommendations in their 2016 guideline on ‘End of life care for infants, children and young people with life-limiting conditions’ [38]. There is a need for further prospective research looking at the experience of families following the diagnosis of a life-limiting condition during pregnancy, the support they are currently offered and the role that PPC services can play in this support.

This was a retrospective chart review and was therefore reliant on the accuracy of the data available in the medical notes. We attempted to look at other features of the antenatal referrals including parental ethnicity and religion and bereavement follow-up but unfortunately a lot of this data was missing, making it too incomplete to usefully interpret. We have also not captured here those babies diagnosed with a life-limiting condition antenatally but who were not referred to the PPC team until after birth. This study also lacks any qualitative assessment of the experience of parents (as well as that of health care professionals), which is crucial in understanding the impact of the support offered to families by the PPC team.