Is there a Role of Palliative Care in the Neonatal Intensive Care Unit in India?

Recent advances in medical care have improved the survival of newborn babies born with various problems. Despite this death in the neonatal intensive care unit (NICU) is an inevitable reality. 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. Palliative care is a multidisciplinary approach to relieve the physical, psycho social, and spiritual suffering of patients and their families. Palliative care provision in the Indian NICU settings is almost nonexistent at present. In this paper we attempt to "build a case" for palliative care in the Indian NICU setting.

INTRODUCTION

In 1960, the idea of having a special intensive care unit for newborns—a neonatal intensive care unit (NICU)—represented a developmental milestone for the field of neonatology. With the increased sophistication developed since then, doctors now are able to save the lives of many premature or desperately ill newborns who in the past would have died soon after birth.[1] Over the years, survival of neonates born on the margin of viability has been continuously pushed back to younger and younger ages. Neonates as young as 25 weeks and as small as 750 g are routinely being saved. However, survivors often have significant physical and mental impairments, including cerebral palsy, blindness, and learning disabilities.[2]

Neonatal mortality rate of India reported in 2009 is 34 per 1000 live births as per the UNICEF.[3] The principal causes of neonatal mortality in India are sepsis, perinatal asphyxia, and prematurity.[45]

While it is hoped that level III NICUs will help in improving the survival of very sick newborns, death in the NICU is an inevitable reality. 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 time of psychological and existential suffering.

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.”[6] It is a team-based approach also aimed at relieving the psychosocial, emotional, and spiritual suffering of the family.

There is negligible penetration of palliative care in the neonatal intensive care setting in India.

In this paper we attempt to “build a case” for neonatal intensive care in India.

MEDICAL ISSUES

Pain management in the NICU

A neonatal intensive care unit often caters to babies with complex medical needs. Invasive treatments like ventilation, repeated blood sampling, invasive catheters are common. Caring for very sick neonates is compounded by the uncertainty that surrounds the immediate outcomes (survival) and the long-term outcomes (disabilities, quality of life and the need for continual medical care including repeated hospitalizations).

Assessment of symptoms such as pain is challenging in neonates due to lack of uniform guidelines. Besides, even though pain scales are available, most have been developed in acute settings. Van Dijk et al. point out that “Babies who are very ill or are in severe pain may have limited expression of pain.”[7] This is a barrier to adequate pain relief of neonates who may continue to suffer.

Appropriate pain control is an essential component of good neonatal practice. Palliative care with its emphasis on pain and symptom control is therefore likely to be beneficial in neonatal care.

End-of-life care

NICUs have mortality rates which may be significantly higher than in several other medical specialties. Most health care professionals working in neonatology care for dying babies at some point in their careers.

A study by Pierucci et al. describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation.[8]

This suggests that palliative care consultation may enhance end-of-life care for newborns through better control of pain and other distressing symptoms and by avoiding futile treatments whose burdens outweigh benefits. Palliative care focuses on the holistic care for the baby and the family.

Bereavement support

The care received by babies during their hospitalization prior to their death can have a profound impact on the grief response of their bereaved parents.[910] Osagie et al. believe that families leaving the neonatal unit after the death of their baby require the same amount of consideration as those families fortunate enough to be taking a baby home.[11]

Health care professionals working in neonatology must also have the skills to care for bereaved families. The NICU should ideally be equipped to support families to spend time with the baby during and after the terminal phases of their child's illness.

ETHICAL ISSUES

In this paper we discuss two scenarios where decision making is difficult for those caring for a newborn. The first is centered on resuscitation at birth and the other around withholding/withdrawing futile treatments in the NICU.

According to Moriette et al.,[12] the decision to withhold resuscitation and/or intensive care at birth, which is an option at the margin of viability, implies allowing babies to die, although some of them would have developed normally if they had received resuscitation and/or intensive care. The likelihood of survival without significant disabilities decreases as gestational age at birth decreases. In France today, the gray zone corresponds to deliveries at 24 and 25 weeks of postmenstrual age. In France today, the gray zone corresponds to deliveries at 24 and 25 weeks of postmenstrual age.[12]

In India, Chada[13] argues that “clinicians should not hesitate to withdraw support with no functional survival” based on the following guidelines:[13]

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. This issue was demonstrated by the findings of a large study across eight countries in Europe. The results showed that most physicians reported having been involved at least once in setting limits to intensive care because of incurable conditions or a baby's poor neurological prognosis. Practices such as continuation of current treatment without intensification and withholding of emergency maneuvers were widespread, but withdrawal of mechanical ventilation was reported by variable proportions of physicians.[14]

In general, most of the ethical decisions in neonatal practice are made on the basis of the “best interest” of the baby. The decision makers usually are parents and/or doctors caring for the baby. Decisions about withholding or withdrawing treatments must be based on the concept of medical futility. Parents and healthcare professionals should be involved together in making these difficult decisions.[15]

Stress of parents

When a newborn is admitted to an NICU, the anticipated natural course after a much awaited birth takes a turn for the worse. Having a child admitted to an NICU[16] creates a stressful situation for the parents. They are faced with a high technology environment that inhibits normal parenting activities. They may also be confronted with the untimely birth of their infant who may be quite tiny and/or very sick. Seideman et al.[17] have identified the following areas that are particularly stressful: parental role alteration, infant behavior and sick or fragile appearance , sights and sounds in the NICU, staff relationships.

Even though the neonatology team may have a good rapport with the family, members of the palliative care team may be able to provide additional psychological support to parents and families through these difficult times.

Often parents are asked to make decisions about the treatment of their babies. Such decisions may have far-reaching consequences for the baby. Parents need adequate information and support while making such decisions.

Parental decision making can be viewed in the light of an ethical framework where parental autonomy and the “best interest” principles come into play. A study by Orfali and Gordon compares the parents’ experiences in neonatal intensive care units in France and the United states. The authors conclude that across both settings, parents value staff inputs in providing means to cope, translating the impersonal language of “rights” and decision-making into trusting, caring relationships, and sharing the responsibility for making tragic choices.[18]

A palliative care team with 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.

The health care professionals

NICU nurses reported feelings of helplessness and intense sorrow when a baby dies. As a result, they experienced the physio-emotional responses of chronic fatigue, decreased interest in exercise, irritability, and being overcritical.[19] Nurses underline the suffering of the newborn, whereas physicians stress uncertainty in treatment outcome.[20] The emotional burden of care giving among Indian doctors and nurses is not known but it may well be similar to that described in the west.

Besides the physicians also face ethical and legal dilemmas about treatment which may be futile. There are also no clear cut legal guidelines about withholding and withdrawing futile treatments, in India.

The palliative care approach in the NICU can ensures that all babies would receive humane and compassionate care aimed at comfort, irrespective of ongoing life sustaining treatments.

Cost of neonatal care

In the United States, daily NICU costs exceed $3500 per infant; a prolonged stay commonly costs up to $1 million. This expense does not include the cost to care for a child with severe disabilities after discharge from the hospital.[21]

In resource-strapped settings like ours, costs of medical care are an important consideration. Families often may have little or no access to reimbursement even in the public healthcare setting and often may have to pay for the cost of care by selling their belongings. Repeated absenteeism during the baby's hospitalization may lead to loss of wages and sometimes even of the job.

While caring for neonates, consideration must be adequately given to the balance of burdens versus the benefits of treatments.

CONCLUSION

Neonatal palliative care is an integral part of neonatal practice in countries like the UK. The British Association of Perinatal Medicine has a detailed framework “Clinical Practice in Perinatal Medicine”[22] which explains the indications for initiating palliative care for babies, including for some fetal conditions diagnosed prenatally. The framework also provides guidance about care for the mother and the family, decisions about obstetric care, transfer to the home, end–of-life care, and bereavement support.

At present there are no such clinical practice guidelines recommended in India. However in a setting where the mortality rates are higher than in the West, palliative care is relevant in the neonatal intensive care setting.

The authors agree with Kilby et al.[23] who pointed out, in a recent article, that “way ‘achieving a good death for all’ can include the care of unborn and newborn babies.”

The overall benefits of palliative care provision in the NICU in the Indian setting may be improvement in management of symptoms including pain, appropriate end-of-life care, psychological support to families, and support for decision making for babies “who are not going to get better.”