Journal of Palliative Care & Medicine
Open Access

Palliative care; Perinatal medicine; Foetal disorders; Decision-making

Introduction

The ability to diagnose and treat complicated medical disorders in foetuses early because to advancements in perinatal medicine. Medical or surgical treatments for some life-threatening foetal disorders have been so effective that long-term survival and functional results are unquestionably positive [1,2]. Babies will virtually surely pass away in utero or very early in life if contemporary science cannot yet come up with a cure for these conditions [3]. Between those two extremes, there are an increasing number of diagnoses for which prognostic uncertainty is still quite high. Could a novel or experimental foetal intervention alter the course of a disease that was formerly fatal? Could technology, high-quality newborn intensive care, or surgical treatment possibly prolong life well beyond predicted results? What would a baby's survival look like and how long may it last, if it does? A flexible and interdisciplinary approach is necessary to provide families with the effective care they need during these difficult and frequently unpredictable situations.

Perinatal palliative care

Perinatal palliative care is a strategy that "comprises options for obstetric and newborn care that include a focus on maximizing quality of life and comfort for newborns with a variety of conditions considered to be life-limiting in early infancy," according to the American College of Obstetricians and Gynecologists (ACOG) [4]. The field has expanded over the past several decades and can now encompass care paths for both neonates with life-threatening diseases detected after delivery and pregnant patients who have life-threatening foetal diagnosis. Due to the severity of the foetal anomaly identified during pregnancy, perinatal palliative care continues to focus on families who have expressed a desire to: (a) continue the pregnancy; and (b) pursue a care plan that emphasises comfort and avoids intensive attempts at life-prolongation [5-11]. However, only a tiny percentage of families dealing with a complicated, fatal foetus diagnosis receive help from this strategy for palliative care. In addition, ACOG emphasises the need of providing palliative care alongside life-prolonging measures, and we contend that this more inclusive strategy ought to be made the norm in perinatal practise. Regardless of the choices made by a family, palliative care should be included as soon as a life-threatening foetal diagnosis is made in order to contribute to educated decisionmaking and offer continued support during the uncertain path. As fears generally continue despite whatever post-natal decisions that have been made, palliative care professionals can provide families with additional psychological assistance during the pregnancy. Even families that consciously choose to explore life-prolonging alternatives after birth might gain from continued assistance during what is sometimes a protracted, challenging, and unpredictable path. Palliative care doctors can help with planning and delivering high-quality end-of-life care after delivery or move to a continuing supportive care role for those newborns who are living with chronic medical complications and mortality risk, depending on the circumstances. They can support families in memory-making and bonding activities, regardless of the care plan. Although the significance of these deeds is widely acknowledged when a baby is on the verge of death [12], our experience has shown that they may be as significant to the families whose children are in intensive care. In the event that a pregnancy is lost or a baby dies, palliative care teams can also offer opportunity for early and continuing grieving support.

A family must make a complicated series of choices when a lifethreatening foetus diagnosis is given. The hazards and advantages of continuing a pregnancy vs having it terminated may be questioned, and assistance is required in both situations. Depending on the diagnosis, the prospective treatments for the foetus or baby that can try to extend life might be very different. In order to obtain certain interventions, the possibility of transferring care to alternative maternity care providers or institutions may also be mentioned. Parents must be able to comprehend and appreciate all feasible avenues of care and what each entails in order to give properly informed consent. Palliative care professionals should be included to convey what comfort-focused endof- life care would entail for a baby with a specific diagnosis, just as a surgeon would be called in to advise families about the possible risks and advantages of a certain surgical technique. Experts in palliative care, particularly those practicing outside of hospitals, are wellpositioned to discuss the many alternatives for managing symptoms as well as the setting of treatment (eg. home or residential hospice). Every family whose foetus has a life-threatening disease where comfortfocused care may be one legitimate treatment approach, regardless of whether it is the chosen path, should have equitable access to palliative care assistance. Using this method assures that a family's choice of care alternatives will not excessively influence the variety of information and assistance they get. Previously, some prenatal diagnosis were regarded as "fatal." When a so-called "fatal" foetal diagnosis is established, there can be a large amount of prognostic uncertainty, which is why modern perinatal medicine admits that this phrase is problematic. Early diagnosis is becoming made possible by modern imaging and genetic testing techniques. Even if a diagnosis is made early on, as the baby's physiology, growth, and development are watched throughout the pregnancy, our understanding of that baby's specific phenotype may change. Neonatal care (surgery and critical care supports) and prenatal care (e.g., improved imaging technology and foetal surgery) continue to develop due to technological advancements. The word "fatal" is not only offensive to families, but as perinatal medicine continues to develop, its accuracy in this context is also called into doubt [13]. Since prognoses are frequently unknown, palliative care integration should take place concurrently with thinking about other approaches. Palliative care focuses on examining care objectives that may affect trajectory-based care planning. As families gain knowledge and take into account new information from multiple providers throughout time, decision-making may be a fluid process. Over time, families' choices and perceptions of what is or is not in their infant's best interests may change [14-17]. For some, a clear emphasis on comfort or life-extension measures may be necessary. Others feel that preparing for both scenarios based on the course of the pregnancy and the early neonatal period best fulfils their healthcare objectives.

Discussion

Discussing various elements of care during pregnancy, labour, and delivery is made easier for maternity care professionals and families when everyone is aware of all the alternatives for how a baby will be looked after birth. In fact, decisions about the place of birth, the level of foetal monitoring, and the threshold for procedures like caesarean sections in the case of foetal distress may be influenced by the same objectives of care that guide the plan of care for the newborn. As maternity and neonatal care clinicians provide suggestions for the labour and delivery process, palliative care teams can investigate topics that offer beneficial insight. A detailed birth plan that includes components honouring the baby and creating memories as well as medical information can provide families a sense of control in a circumstance where they may feel that much of their power to influence events has been gone [18-20].

Uncertainty may also surface when a baby receiving comfortfocused care approaches the end of life. Early connection development with a palliative care team can assist families who choose this care choice clarify where the optimal site of care would be if the infant lives through the first few hours or days following delivery. 14 While some families would rather remain in the hospital, others would rather be released and sent home or to a residential hospice. The array of assistance that can be made accessible outside of the hospital and in a specific community are often best known to palliative care staff. They can continue to be involved throughout time so that the goals of care can be reviewed with familiar physicians in the event that a kid lives longer than anticipated.

Conclusion

Involvement in perinatal palliative care can offer an essential additional layer of support on top of the many other professionals that assist patients and families dealing with a life-threatening foetus diagnosis. Informed decision-making, navigating ambiguity, and grief support are all things that palliative care teams may help with, regardless of how well the goals of treatment or trajectory of the foetal condition are understood. Building a long-term therapeutic connection between families and palliative care teams can be facilitated by early normalisation of the additional value of palliative care following a foetal diagnosis. The palliative care team's assistance through uncertainty and sadness should be viewed as complementary, regardless of whether they eventually take on a supportive care role for a newborn getting intensive treatments or a more central role in supporting high quality end-of-life care. Early perinatal palliative care engagement can assist to improve treatment during pregnancy and beyond for all families dealing with a life-threatening foetus diagnosis.

Acknowledgement

Not applicable.

Conflict of Interest

Author declares no conflict of interest.

1. Maselli K, Badillo A (2016) Advances in fetal surgery. Ann Transl Med 4: 394.

Indexed at, Google Scholar, Crossref

2. Ulivi G, Breeze A (2018) Advances in fetal therapy. Obstet Gynaecol Reprod Med 28: 159-163.

Google Scholar, Crossref

3. Jansen L, Sulmasy D (2002) Proportionality, terminal suffering and the restorative goals of medicine. Theor Med Bioeth 23: 321-337.

Indexed at, Google Scholar, Crossref

4. American College of Obstetricians and Gynecologists (2019) Perinatal palliative care: ACOG committee opinion, Number 786. Obstet Gynecol 134: 84-89.

Indexed at, Google Scholar, Crossref

5. Rusalen F, Cabicchiolo ME, Lago P, Salvadori S, Benini F (2021) Perinatal palliative care: a dedicated care pathway. BMJ Support Palliat Care 11: 329-334.

Indexed at, Google Scholar, Crossref

6. Wool C, Cote-Arsenault D, Perry Black B, Denny-Koelsch E, Kim S, et al. (2016) Provision of services in perinatal palliative care: a multicenter survey in the United States. J Palliat Med 19: 279-285.

Indexed at, Google Scholar, Crossref

7. Wool C (2013) State of the science on perinatal palliative care. J Obstet Gynecol Neonatal Nurs 42: 372-382.

Indexed at, Google Scholar, Crossref

8. Wool C, Parravicini E (2020) The neonatal comfort care program: origin and growth over 10 years. Front Pediatr 8: 8432.

Indexed at, Google Scholar, Crossref

9. Hendson L, Davies D (2018) Supporting and communicating with families experiencing a perinatal loss. Paediatr Child Health 23: 549-550.

Indexed at, Google Scholar, Crossref

10. Wilkinson D, de Crespigny L, Xafis V (2014) Ethical language and decision-making for prenatally diagnosed lethal malformations. Semin Fetal Neonatal Med 19: 306-311.

Indexed at, Google Scholar, Crossref

11. Balaguer A, Martin-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J (2012) The model of palliative care in the perinatal setting: a review of the literature. BMC Pediatr 12: 25.

Indexed at, Google Scholar, Crossref

12. Thornton R, Nicholson P, Harms L (2019) Scoping review of memory making in bereavement care for parents after the death of a newborn. J Obstet Gynecol Neonatal Nur 48: 351-360.

Indexed at, Google Scholar, Crossref

13. Marty CM, Carter BS (2018) Ethics and palliative care in the perinatal world. Semin Fetal Neonatal Med 23: 35-38.

Indexed at, Google Scholar, Crossref

14. Viallard ML, Moriette G (2017) Palliative care for newborn infants with congenital malformation or genetic anomalies. Arch Pediatr 24: 169-174.

Indexed at, Google Scholar, Crossref

15. Cortezzo DE, Bowers K, Cameron Meyer M (2019) Birth planning in uncertain or life-limiting fetal diagnoses. Perspectives of physicians and parents. J Palliat Med 22: 1337-1345.

Indexed at, Google Scholar, Crossref

16. Howard E (2006) Family-centered care in the context of fetal abnormality. J Perinat Neonatal Nurs 20: 237-242.

Indexed at, Google Scholar, Crossref

17. Thornton R, Nicholson P, Harms L (2020) Creating evidence: findings from a grounded theory of memory-making in neonatal bereavement care in Australia. J Pediatr Nurs 53: 29-35.

Indexed at, Google Scholar, Crossref

18. Cote-Arsenault D, Denney-Koelsch EM, McCoy TP, Kavanaugh K (2019) African American and latino bereaved parent health outcomes after receiving perinatal palliative care: a comparative mixed methods case study. Appl Nurs Res 50: 200.

Indexed at, Google Scholar, Crossref

19. Kersting A, Wagner B (2012) Complicated grief after perinatal loss. Dialogues Clin Neurosc 13: 187-194.

Indexed at, Google Scholar, Crossref

20. Wool C, Catlin A (2019) Perinatal bereavement and palliative care offered throughout the healthcare system. Ann Palliat Med 8: 22-29.

Indexed at, Google Scholar, Crossref