Many advances have been made in the last two decades in successfully treating smaller and sicker neonates. Focus on curative care, improvements in technical interventions, and pushing the limits of viability in order to save the most vulnerable life has become the predominance in neonatology. Despite this trend, death in the NICU remains frequent. The babies who die in the NICU account for the majority of infant deaths in this country. Furthermore, many graduates from the NICU have chronic, life-limiting illnesses that contribute to infant mortality after discharge.
Hospice, or the end-of-life care in terminal patients, certainly provides a component of caring for critically ill neonates, though care of this sort is beneficial long before an infant is deemed terminal and curative care is stopped. Palliative care arose for this need. Palliative care is specialized care offered to patients with chronic, life-limiting illness, which focuses on the relief of the physical, psychological, and spiritual suffering from chronic illness, whether death is imminent or not. All hospice care is palliative care, but not all palliative care is hospice care.
Palliative care, hospice care, and curative care all intersect in the NICU while caring for the most fragile and vulnerable patients with limited life expectancy. These small babies are found to have a 40-200 fold increased risk of neonatal mortality. Even among the survivors, however, serious life-long sequelae are common, most notably chronic lung disease, short gut syndrome, and cerebral palsy. Yet, despite the clear benefits to this population, a formal palliative care team is commonly not found in most NICUs in the United States. Resistance is often created by the NICU caregivers themselves, perhaps due to reluctance to acknowledge perceived sense of failure in caring for neonates who do not respond to treatment, reluctance to add another specialist at a time when family is most vulnerable, or simply a lack of understanding of the benefits that can be provided with this focused, specialized support.
Palliative care is rendered in a team approach and can extend throughout the life of the patient, beyond the NICU, both while both inpatient and outpatient. The multidisciplinary team is led by a board certified physician trained in providing pediatric palliative care, joined by specially trained nurses, social workers, and clergy. The parent becomes an integral partner within this team who, after education and identification of what defines quality of life for their infant, guides decisions regarding the course of treatment. The palliative care team, working in conjunction with the medical or curative team, develops unique goals of care with the patient’s family, providing support in relief of physical pain and discomfort of the infant as well as spiritual end-of-life care when appropriate. Care is a planned intervention with consistency in the message provided, which assists the family when making care decisions for their child and gives dignity and meaning to this young life. Unlike hospice care, palliative care can be provided in conjunction with ongoing curative care and continued beyond the discontinuation of curative care. Ideally, the relationship between family and palliative care team begins early, so trust is well established when moving towards decisions to end curative treatment.
An additional benefit provided by the palliative care team is support of the NICU staff caring for these complex patients. For those professionals who commit their skills to caring for these precarious lives, grieving the many losses encountered throughout their career creates susceptibility to moral distress or moral fatigue, apathy, depression and burnout. Those trained in palliative care are capable of supporting not only families but also NICU staff in many ways. First, by providing interventions that diminish suffering and helping families give meaning to their infant’s life, the suffering witnessed by caregivers is minimized somewhat. Second, they provide conflict resolution measures when parents and caregivers are not in agreement of the course of action that is warranted, thus minimizing aggressive and inhumane treatment in the face of futility. Further, the palliative care team arranges formal debriefing sessions for NICU staff after difficult cases. These measures are important in acknowledging grief reactions in the providers and assisting in healthy resolution.
Appropriate patients for referral to palliative care team can be decided by each NICU, but generally the list includes infants born at the edge of viability, infants with chromosomal or anatomical abnormalities known to be life-limiting, infants with significant neurological injury requiring gastrostomy or tracheostomy, and any other infant with multiple anomalies that are life-limiting. Referral should occur with a prenatal diagnosis or as soon as the condition is identified in the NICU. Early establishment of support for the family facilitates improved connection and communication between the team and the parents. The transition from curative to comfort care is more seamless when this relationship is established early, and parents are educated and supported in making decisions with priority given to reality rather than unrealistic hope.
In conclusion, together with many advances in neonatal care, we continue to be responsible to provide the best care possible. This includes appropriate and unselfish end-of-life care when curative treatment fails. Instead of saying “there is nothing more we can do,” we need to say “it is time to redirect care and focus on providing a peaceful and meaningful death for this baby and its family.”