As of 2020, UNICEF reports India’s Neonatal Mortality rate is 20 per 1000 live births. The major causes of neonatal deaths are Prematurity & low birth weight (46.1%), Birth asphyxia & birth trauma (13.5%), Neonatal Pneumonia (11.3%), Other noncommunicable diseases (8.4%), Sepsis (5.7), Congenital anomalies (4.3%).
Problems of infants born prematurely or with congenital anomalies is not a new one. The reports published in earlier times indicate that such children were cared for at home without any medical intervention. It was only in the 1960’s, that the idea of having a special intensive care unit for new-born’s and a neonatal intensive care unit (NICU) was conceptualized, which represented a developmental milestone for the field of neonatology.
With access to new technology and sophisticated care delivery measures, doctors are now able to provide improved healthcare delivery for children born prematurely or for those desperately ill new-borns’ who in the past would have died soon after birth. With many decades of evolving advancements, neonates as young as 25 weeks and as small as 750gms at birth have been provided specialised intensive care and are routinely saved all around the world. However, survivors often have significant physical and mental impairments, including cerebral palsy, blindness, and learning disabilities.
Although there are measures put in place to improve the infrastructure for level III NICU’s with an aim to improve survival, there is a huge demand gap and death is still an inevitable reality in NICUs for a vast majority of neonates in the country. For babies who are not going to “get better,” the health care team still has a duty to alleviate the physical suffering of the baby and to support the family through this distressing time.
According to Catlin and Carter, palliative care for neonates is “an entire milieu of care to prevent and relieve infant suffering and improve the conditions of the conditions of the infant’s living and dying.”
Efforts by palliative care professionals and paediatricians in recent years have been attempted to provide access to infants and children with palliative care needs, however Neonatal palliative care is still at its infancy in India.
A working definition for neonatal palliative care shared by Together for Short Lives, a children’s palliative care group in the UK, reads:
“Palliative care for a foetus, neonate, or infant with a life-limiting condition is an active and total approach to care, from the point of diagnosis or recognition, throughout the child’s life, at the time of death and beyond. It embraces physical, emotional, social, and spiritual elements and focuses on the enhancement of quality of life for the neonatal infant and support for the family. It includes the management of distressing symptoms, the provision of short breaks, and care through death and bereavement”
The categories of neonates who may be eligible for PC (August W G et al 2010, BAPM Guidelines, UK)
|Example of cases
|Antenatal/postnatal diagnosis of a condition that is not compatible with long-term survival.
|Bilateral renal agenesis anencephaly.
|Antenatal/postnatal diagnosis of a condition which carries a high risk of significant morbidity or death.
|Severe bilateral hydronephrosis with impaired renal function.
Severe spina bifida.
|Babies born at the margins of viability where intensive care has been deemed inappropriate.
|Babies born at ≤23 weeks with bilateral haemorrhagic parenchymal infarct.
|Postnatal clinical conditions with a high risk of severe impairment of quality of life and when the baby is receiving life support or may at some point require life support.
|Severe hypoxic ischaemic encephalopathy.
|Postnatal conditions which result in the baby experiencing ‘unbearable suffering’ in the course of their illness or treatment.
|Severe necrotising enterocolitis.
In India, Chadha et al 2010, recommended the following guidelines to consider for the limitation of life sustaining treatment in neonates and infants.
- When gestation, birth weight, or congenital anomalies are associated with certain early death and unacceptably high morbidity, resuscitation is not indicated, for example, extreme prematurity (gestational age < 23 weeks or birth weight < 400 g), anencephaly, or chromosomal abnormalities, such as trisomy 13.
- In conditions with a high rate of survival and acceptable morbidity, resuscitation is nearly always indicated, for example, infant with gestational age 25 weeks and infant with congenital malformations.
- In conditions associated with uncertain prognosis, wherein survival is the borderline, the morbidity rate is high and the anticipated burden to the child is high; parental desires concerning initiation of resuscitation should be supported.
- Infants without signs of life (no heart beat and no respiratory effort) after 10 minutes of resuscitation show either a high mortality or severe neuro-developmental disability. Therefore, after 10 minutes of continuous and adequate resuscitative efforts, discontinuation of resuscitation may be justified.
While the above guidelines appear to be very succinct, real-life situations may often be very complex. Several studies have documented about physicians coming across at least once where decision making was complex and involved settings limits for children to receive resuscitation or withdrawing futile interventions for children with poor chances of survival or futility. Parents are often asked to make decisions about the treatment of their babies and it may have far-reaching consequences for the baby. Parents need adequate information and support while making such tragic decisions. A palliative care team with its expertise in communication skills can play an important role in supporting parents along with the neonatology team. The multidisciplinary palliative care approach may help parents find much-needed emotional support and liaison with other healthcare workers in the hospital.
I would like to share below a similar experience my team faced.
This is the case of a neonate born at another hospital, and who at day 17 of life was admitted outside, for a suspected aspiration of milk at home. The baby was critically ill and was referred to our hospital on day 22 of its life for further management. The baby was managed in the NICU by the neonatology team for almost a month, with hundreds of tests and imaging done to evaluate and prognosticate. That month was very tumultuous and distressing for both the baby and the parents. The baby had suffered severe asphyxia induced global hypoxic brain injury, brain imaging, with the biochemical tests confirming a diagnosis of Maple syrup Urine. The baby also later developed other medical complications due to a prolonged NICU stay.
The baby was ventilator dependent even after the NICU’s multiple attempts to wean the baby off the mechanical ventilation. The baby’s parents and extended family were regularly updated with ongoing discussions about prognosis. The NICU team involved our hospital’s Pediatric palliative care (PPC) team to begin discussion on goals of care, as the baby had progressively worsened clinically. With multiple sessions of clear, open, and honest communication between the baby’s parents and the NICU and PPC teams, we were able to enlighten the parents about their baby’s poor quality of life due to prolonged aggressive care, the poor prognosis (poor neurological outcomes) and the futility of continuing life sustaining supports.
The parents felt supported to make a tragic decision and voiced their understanding to opt for comfort care, keeping in mind their baby’s best interest to prevent its further suffering. Our hospital’s policy for End-of -Life care – BLUEMAPLE© was followed with Withdrawal of all life sustaining supports and the baby was eventually provided end-of-life care. The baby succumbed after a few days with appropriate control of distressing symptoms. During the last few days of the baby’s life, the parents were encouraged to meet the baby and hold their baby in the NICU area for as long as they wanted. Our team offered to create memories and provided emotional support for the family who were experiencing overwhelming anticipatory grief, during the days leading to the baby’s death.
Ensuring transparency, honest communication and taking into consideration the balance of burdens versus the benefits of treatments for neonates, integrating the palliative care approach in the NICU will ensure that all babies would receive humane and compassionate care which aims to provide comfort, irrespective of a baby’s ongoing life sustaining treatments. The overall benefits of integrating palliative care in India’s NICU’s will improve the management of symptoms including pain, provisioning appropriate end-of-life care, providing psychological support to families, and supporting parents and the NICU team to make challenging decisions for those babies “who are not going to get better.”