Abstract
Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measures only approach to care. When curative or life-prolonging interventions are not available or have been exhausted, parents focus on preserving quality of life and eliminating needless suffering. Parents hope their child will have a peaceful death and will not feel pain. A significant component of end-of-life care is high quality symptom evaluation and management. It is important that neonatal providers are knowledgeable in symptom management to address common sources of suffering and distress for babies and their families at the end-of-life (EOL).Recent findings: Medically complex neonates with life-threatening conditions are a unique patient population and there is little research on end-of-life symptom assessment and management. While there are tools available to assess symptoms for adolescents and adults, there is not a recognized set of tools for the neonatal population. Nonetheless, it is widely accepted that neonates experience significant symptoms at end-of-life. Most commonly acknowledged manifestations are pain, dyspnea, agitation, and secretions. In the absence of data and established guidelines, there is variability in their clinical management. This contributes to provider discomfort and inadequate symptom control.Summary: End-of-life symptom assessment and management is an important component of neonatal end-of-life care. While there remains a paucity of studies and data, it is prudent that providers adequately manage symptoms. Likewise, it is important that providers are educated so that they can effectively guide families through the dying process by discussing disease progression, physical changes, and providing empathetic support. In this review, the authors make recommendations for non-pharmacological and pharmacological management of end-of-life symptoms in neonates.
Highlights
Neonatal end-of-life care is pivotal for the patient, parents, and providers
Whether the need for end-of-life care is the result of a comfort measures only approach with a known lifelimiting diagnosis, the result of redirection of care after a trial of therapy, or the end result despite maximal invasive medical interventions, it is an incredibly difficult time filled with emotions and uncertainty
Symptoms experienced during EOL care that can be applicable to the neonatal population include agitation, dyspnea, neuroirritability, pain, and increased secretions [20, 22]
Summary
Neonatal end-of-life care is pivotal for the patient, parents, and providers. Whether the need for end-of-life care is the result of a comfort measures only approach with a known lifelimiting diagnosis, the result of redirection of care after a trial of therapy, or the end result despite maximal invasive medical interventions, it is an incredibly difficult time filled with emotions and uncertainty. Effective management requires anticipation of the disease manifestations as well as the severity of symptoms for each patient This can vary greatly and is often related in part to the underlying diagnoses and conditions leading to death. There are few reliable tools to accurately assess symptoms and observational measures can be blunted depending on the gestational age and underlying disease process This makes it difficult for providers to know if a neonate is experiencing symptoms at the EOL and if interventions are alleviating the symptoms to a satisfactory and acceptable level. Symptoms experienced during EOL care that can be applicable to the neonatal population include agitation, dyspnea, neuroirritability, pain, and increased secretions [20, 22]. This can be the result of the underlying disease process or from overall decreased tone, alertness, and activity during the dying process
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