When a Baby Is Not Expected to Survive: What Research Says About the Support Families Should Be Offered

Three 2025 studies looked at what perinatal palliative care should provide, how hospitals organise it, and how many families are actually offered it

When a scan shows that a baby has a condition that cannot be cured, families face a stretch of pregnancy that nothing prepares them for. Perinatal palliative care exists for exactly that stretch: support for the baby, the parents, and the wider family before birth, during birth, and afterwards. Three studies published in 2025 examined how this care is organised, and found that most families who could benefit from it are never offered it.

What perinatal palliative care actually is

The word "palliative" makes many people think only of the final hours of life. In this setting it means something broader. Perinatal palliative care — "perinatal" simply means the period around birth — is a package of support that begins when a serious diagnosis is made during pregnancy and continues through birth, through the baby's life however long that turns out to be, and into the family's grief afterwards.

In practice it can include a doctor who explains what the diagnosis means and what the different possibilities are; a psychologist who supports both parents; help writing a birth plan that says what the family wants to happen in the delivery room; arrangements for a chaplain or spiritual support if the family wants it; professional photographs, handprints and footprints so there is something to keep; comfort care for the baby, including pain relief; and continued support for the family after the baby dies. Importantly, it does not mean giving up. Many babies who receive this care also receive active medical treatment, and some go home.

How families used to face this, and what changed

For most of the history of newborn medicine, no such package existed. The idea of adapting hospice principles — originally developed for dying adults — to newborn care was first proposed in 1982 by a group of clinicians who noticed that families in this situation were being left to cope alone [1]. Progress was slow. It took until 2019 for the American College of Obstetricians and Gynecologists to formally recommend that families facing a life-limiting fetal diagnosis be offered continuous support from a team spanning obstetrics, newborn medicine, and palliative care [2].

Even then, what a family received depended almost entirely on which hospital they happened to attend. A survey of programmes across the United States found wide differences in how they were structured, what they offered, and what they measured [3]. A survey of French hospitals found something more uncomfortable: whether a family was even told about this care depended less on the baby's diagnosis than on the individual doctor's private judgement about what the baby's life might be like and how certain they felt about the diagnosis [4]. A review of the worldwide research literature confirmed that the whole field was young, with its foundations laid only in the late 1990s and most of its published work coming from a small number of wealthy countries [5].

Three studies, three different questions

The first 2025 study, run from a palliative care research centre in Prague, Czech Republic, asked international experts and bereaved parents to agree on what the field most urgently needs to find out [6]. The second, from the University of Padua in Italy, gathered every study published over the previous ten years that described how hospitals organise this care, and compared them [7]. The third, from the Gajusz Foundation in the Lodz region of Poland, described seven years of running an actual programme and counted how many families it reached [8].

None of the three teams set out to produce a series. That they arrived at compatible conclusions from three directions is part of why the picture is worth taking seriously.

What experts and bereaved parents said matters most

The Prague team invited 125 experts and 10 parents who had experienced the death of a baby, and asked them across three rounds of surveys to suggest, then score, then rank research priorities. The first round produced 187 suggestions, which were condensed into 61 topics across seven themes: how care is organised, decision-making and communication, support and training for staff, ethics, symptom management, bereavement, and family experience. Thirty-four topics reached agreement [6].

What rose to the top is striking. The single highest-ranked priority was not a treatment question but a practical one: how should this care best be offered to families — how, when, in what circumstances, and by whom? Second was how a service should be designed and fitted into a health system. Third was the ethics of decision-making. Pain management and the care of extremely premature babies also ranked in the top ten, but the message from the people who do this work every day was that the field's biggest unknown is organisational. They do not fully know how to reach families in time.

What the research literature actually contains

The Italian review searched three major medical databases and found 14 studies that described how perinatal palliative care is delivered. Nine of the 14 (64%) came from the United States, four from Europe, and one from Singapore. Not one was a clinical trial — every study was an observation of what one or two hospitals happened to do [7].

Three broad approaches emerged. In the first, and most common, the palliative care team is a separate specialist service that gets called in when someone asks for it. This is straightforward to set up, but the review found it consistently led to delays and to palliative support never quite becoming part of everyday care. In the second, palliative care is woven into normal newborn care from the start, usually led by a neonatologist who has trained in it. In the third, the two teams work in partnership continuously rather than one calling the other. Across all three approaches, one finding held: when support started early — ideally during pregnancy — parents were more satisfied, goals were clearer, and fewer aggressive treatments were used at the end of life [7]. Earlier work had already shown that introducing such a programme changes what happens in a newborn unit [9], and that parents can be asked directly, and systematically, whether their baby appeared comfortable [10]. One Italian programme even lets families choose which approach they prefer [11].

What one Polish region learned by counting

The Polish team did something the others could not: they worked out how many families in their region could have used their programme, and compared that with how many actually did.

Over seven years, 72 families joined. The most common diagnoses were chromosomal conditions — 24 families (33%), including 17 with trisomy 18 and five with trisomy 13 — followed by combinations of birth defects (18 families, 25%) and absent kidneys (eight families, 11%). Families usually made contact around 25 weeks of pregnancy, most often between 20 and 30 weeks. On average, about six weeks passed between the diagnosis being confirmed and the family reaching the programme [8].

The number that matters most is this: the programme reached about 4.9% of eligible families in its first year, rose to 24.2% by 2016, and stood at 18% in 2020 — roughly 16% across the whole period. More than four in five families who could have been offered this support were not, despite the programme being completely free, staffed by doctors, psychologists, and professional photographers, and backed by a campaign that trained 126 healthcare workers, produced guidebooks for staff and parents, and made two films. The researchers were candid about the reason: the hardest part was persuading the doctors making the diagnosis to mention that the service existed [8].

What happened to those babies and families

Among the 72 pregnancies, 47 babies were born alive and 21 died before birth. Of 42 live-born babies with a life-limiting condition, 26 died on their first day and 10 during their first week; six lived between 15 and 262 days. Thirty-eight died in hospital and four went home or to a hospice with their families. Five other babies turned out, once they were born and assessed, to have conditions that were serious but treatable, and did not need palliative care at all [8].

Two things follow from those numbers, and both are practical. Because most babies live only hours, anything a family might want — photographs, prints, a blessing, time together without interruption — has to be arranged before the birth, not asked for afterwards. And because a meaningful minority live for weeks or months, or turn out not to need this care, the plan has to hold both possibilities at once. The Polish programme did this through a meeting before the birth attended by the parents alongside the obstetrician, neonatologist, midwife, hospice doctor, and psychologist, where the birth plan was agreed together.

What this means for a family facing a diagnosis now

Perhaps the most useful thing to take from this research is that not being offered this support does not mean it would not help. Across every study, the limiting factor was the referral, not the family. Asking directly — "is there a perinatal palliative care or perinatal hospice service we could speak to?" — is reasonable, and the evidence suggests it is often the step that does not otherwise happen. Being referred does not commit a family to any particular decision; in the Polish programme, support was provided regardless of what parents chose about continuing the pregnancy.

It is also worth knowing that this care includes the parents, not only the baby. Mothers who have received it describe the value of being accompanied rather than managed [12], and staff who provide it need support too — something the expert panel named as a priority in its own right, and which researchers have begun to study directly [13]. Families navigating the emotional aftermath may also find In[Neo]Sight's coverage of parental mental health in the newborn intensive care unit relevant ([In[Neo]Sight: NICU parent mental health](https://inneosight.org/en-US/articles/nicu-parent-mental-health)).

What researchers are working on next

The three studies point in the same direction. The Italian reviewers called for proper comparative trials, for research from a much wider range of countries, and for outcomes that measure how families actually fare rather than only what hospitals do [7]. The expert panel independently placed service design at the top of its list [6]. And the Polish experience suggests the first number any programme should measure is the simplest one — what proportion of eligible families are offered the service at all [8].

That is an unusually clear agenda for a young field. It also means that families who ask questions, and units that count honestly, are contributing to the answer.

References

  1. Whitfield JM, Siegel RE, Glicken AD, Harmon RJ, Powers LK, Goldson EJ. The application of hospice concepts to neonatal care. American Journal of Diseases of Children. 1982;136(5):421–424. doi:10.1001/archpedi.1982.03970410039009 ↩
  2. American College of Obstetricians and Gynecologists. Perinatal palliative care: ACOG Committee Opinion, Number 786. Obstetrics & Gynecology. 2019;134(3):e84–e89. doi:10.1097/AOG.0000000000003425 ↩
  3. Denney-Koelsch E, Black BP, Côté-Arsenault D, Wool C, Kim S, Kavanaugh K. A survey of perinatal palliative care programs in the United States: structure, processes, and outcomes. Journal of Palliative Medicine. 2016;19:1080–1086. doi:10.1089/jpm.2015.0536 ↩
  4. Tosello B, Dany L, Bétrémieux P, Le Coz P, Auquier P, Gire C, et al. Barriers in referring neonatal patients to perinatal palliative care: a French multicenter survey. PLoS ONE. 2015;10(5):e0126861. doi:10.1371/journal.pone.0126861 ↩
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  6. Loučka M, Zindulková M, Dvořáková HM, Staníčková Z. Priorities for research in perinatal palliative care: an international Delphi study. BMC Palliative Care. 2025;24(1):202. doi:10.1186/s12904-025-01845-9 ↩
  7. Zanin A, Salerno A, Cavicchiolo ME, Daicampi C, Martini B, Marinetto A, Salvadori S, Benini F. A systematic review of perinatal palliative care models: challenges and opportunities for the future. European Journal of Pediatrics. 2025;184(11):678. doi:10.1007/s00431-025-06459-0 ↩
  8. Korzeniewska-Eksterowicz A, Przysło Ł, Moczulska H. Development and results of perinatal palliative care program: a retrospective cohort study. European Journal of Pediatrics. 2025;184(7):404. doi:10.1007/s00431-025-06210-9 ↩
  9. Younge N, Smith PB, Goldberg RN, Brandon DH, Simmons C, Cotten CM, Bidegain M. Impact of a palliative care program on end-of-life care in a neonatal intensive care unit. Journal of Perinatology. 2015;35:218–222. doi:10.1038/jp.2014.193 ↩
  10. Parravicini E, Daho' M, Foe G, Steinwurtzel R, Byrne M. Parental assessment of comfort in newborns affected by life-limiting conditions treated by a standardized neonatal comfort care program. Journal of Perinatology. 2018;38:142–147. doi:10.1038/jp.2017.160 ↩
  11. Locatelli C, Corvaglia L, Simonazzi G, Bisulli M, Paolini L, Faldella G. "Percorso Giacomo": an Italian innovative service of perinatal palliative care. Frontiers in Pediatrics. 2020;8:589559. doi:10.3389/fped.2020.589559 ↩
  12. Tewani K, Singh R, Wendy CPY, Huan HJ, Jayagobi P, Teo I. Understanding the experiences of mothers receiving perinatal palliative care: a qualitative study. Palliative Medicine. 2023;37:1379–1388. doi:10.1177/02692163231171182 ↩
  13. Grauerholz KR, Fredenburg M, Jones PT, Jenkins KN. Fostering vicarious resilience for perinatal palliative care professionals. Frontiers in Pediatrics. 2020;8:572933. doi:10.3389/fped.2020.572933 ↩