Neonatal End-of-Life Symptom Management

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.

Polysymptomatology in Pediatric Patients Receiving Palliative Care Based on Parent-Reported Data

“…5,28 Both parent and clinician assessment of symptoms in infants and in older patients who are unable to communicate are challenging, especially for symptoms such as low energy or dry mouth, which may not have clear observable manifestations. 29,30 Patient-reported ratings for a symptom may be associated, broadly speaking, with that patient's mental state (such as anxiety or despondency). [31][32][33][34][35] Given that having a child receiving palliative care services also negatively affects the mental state of parents, [36][37][38][39] a set of complex reciprocal relationships between child and parent are likely encoded into parent-reported data.…”

Clinical Characteristics of the End-of-Life Phase in Children with Life-Limiting Diseases: Retrospective Study from a Single Center for Pediatric Palliative Care

“…Neonates are a group who are considered special patients in pediatric palliative medicine. There are few data on symptom control at the end of life in newborns, but they mainly suffer from pain, dyspnea, restlessness, and increased secretion production at the end of life [ 28 ].…”

Continuous Deep Sedation until Death in Neonates and Infants in Flanders: A Post-Mortem Survey

“…A recent literature review reveals that a majority of neonatal deaths are preceded by the administration of some form of pain and/or symptom relief medication [8]. In adults and minors, the term "continuous deep sedation until death" is used to describe the specific practice of reducing consciousness by administering sedatives to treat pain and symptoms [9].…”

“…In adults and minors, the term "continuous deep sedation until death" is used to describe the specific practice of reducing consciousness by administering sedatives to treat pain and symptoms [9]. Although this practice occurs in neonates and infants, terminology varies [4,8,10,11]. As the described objective is effective pain and symptom control by lowering consciousness at the end of life [8], the same terminology as in minors and adults, that is, continuous deep sedation (CDS) until death will be used throughout this article.…”

“…Although this practice occurs in neonates and infants, terminology varies [4,8,10,11]. As the described objective is effective pain and symptom control by lowering consciousness at the end of life [8], the same terminology as in minors and adults, that is, continuous deep sedation (CDS) until death will be used throughout this article.…”