Clinical Practice
Comfort care for infants in the neonatal intensive care unit at end of life☆

https://doi.org/10.1053/nbin.2001.25436Get rights and content

Abstract

When the death of a baby becomes inevitable, the greatest priority of care is to provide pain relief and comfort for the dying infant. Physical, environmental, and social needs are derived from assessment and knowledge of the infant's stage of development and the context of the individual infant's experiences within the neonatal intensive care unit. Assessment parameters for pain often rely on physiologic measures at end of life (EOL), whereas comfort is assessed through physiologic/autonomic, motor, and state behavioral cues exhibited by the infant. EOL care is best provided by using an integrated interdisciplinary, palliative approach in partnership with the infant's parents. Although opioids remain central to EOL care, nonpharmacologic measures for pain relief and comfort enhancement may provide additive or synergistic benefits. A case example applies the concepts of comfort care to an extremely preterm infant at EOL. Copyright © 2001 by W.B. Saunders Company

Section snippets

Comfort care

The theory of comfort care provides the foundation for a discussion of infant symptom management at EOL. Comfort has been defined in the nursing literature as “the immediate experience of having met basic human needs for relief, ease, and transcendence.”1 Relief is the state of having a specific comfort need met such as pain relief, which is the primary focus of this report. Kolcaba1 further defines comfort as occurring within the context of 4 interrelated experiences (physical,

Caregiver competencies for EOL care

Staff who care for dying newborns and infants must have special knowledge and skills to bring to this situation. Brody et al2 identified the need for health care professionals to become skilled in the transition of care delivery from intensive life-support to EOL care in those situations in which aggressive therapies have been proven futile. Cessation of treatment in an unskilled manner may produce distressing patient symptoms, resulting in a negative experience for the infant, family, and

Assessment of pain relief at EOL

Pain assessment is an essential prerequisite to optimal pain management.3, 4, 5, 6, 7, 8, 9, 10 Current professional and accrediting organizational standards recommend the use of multidimensional pain instruments with published reliability and validity.7, 8, 10, 11 No instrument has been developed to assess pain in neonates at EOL. Therefore, the selection of a pain instrument should be based on the infant's capabilities to communicate with his/her caregivers. For instance, if the infant is

Pain relief strategies at EOL

Research reports about EOL care in the NICU, comfort enhancement, and pain relief lag considerably behind those available for older children and adults. Although opioids are central to EOL care, nonpharmacologic measures for pain relief and comfort enhancement may provide additive or synergistic benefits to pharmacologic therapy.

EOL care is best provided by using an integrated interdisciplinary, palliative care approach.21 The provision of palliative care in the NICU involves a partnership

Case example

Although pain management in the NICU has improved dramatically over the last decade, comfort care at EOL remains a substantial concern for caregivers of dying infants (Table 1).

. EOL Case Study of 23-Week-Old Preterm Neonate

“I work in a level III neonatal intensive care unit. We have many extremely preterm infants—some as young as 22 to 23 weeks of gestation who weigh less than a pound. We recently had an infant who was just 23 weeks. Because of a large patent ductus arteriosus (PDA), she was

Conclusion

Comfort care at the EOL for newborns and infants is directed toward pain relief during the dying experience. Physical, environmental, and social needs are derived from assessment and knowledge of the infant's stage of development within the context of the individual experiences that occur moment to moment and hour by hour. Assessment parameters include the physiologic/autonomic, motor, and state systems in relation to the infant's experience. Development of the sensory system is sequential,

References (52)

  • KY Kolcaba

    Holistic comfort: Operationalizing the construct as a nurse-sensitive outcome

    Adv Nurs Sci

    (1992)
  • H Brody et al.

    Withdrawing intensive life-sustaining treatment-Recommendations for compassionate clinical management

    N Engl J Med

    (1997)
  • S Bell

    The national pain management guideline: Implications for neonatal intensive care

    Neonatal Netw

    (1994)
  • F Porter

    Pain assessment in children: Infants

  • American Academy of Pediatrics/Canadian Paediatric Society

    Prevention and management of pain and stress in the neonate

    Pediatrics

    (2000)
  • Agency for Health Care Policy and Research

    Acute pain management in infants, children, and adolescents: Operative and medical procedures: Quick reference guide for clinicians

    (1992)
  • Joint Commission on Accreditation of Healthcare Organizations

    Pain management standards for 2001, (1999)

  • National Association of Neonatal Nurses

    Position paper on pain in neonates

    (1999)
  • International Association for the Study of Pain

    Outline curriculum on pain for schools of nursing, (2000)

  • B Stevens et al.

    Premature infant pain profile: Development and initial validation

    Clin J Pain

    (1996)
  • M Bozzette

    Observation of pain behavior in the NICU: An exploratory study

    J Perinat Neonatal Nurs

    (1993)
  • N McIntosh et al.

    Alleviation of the pain of heel prick in preterm infants

    Arch Dis Child

    (1994)
  • B Stevens et al.

    Physiological responses of premature infants to a painful stimulus

    Nurs Res

    (1994)
  • H Als

    Manual for the naturalistic observation of newborn behavior: Newborn individualized developmental care and assessment program

    (1995)
  • H Als

    Reading the premature infant

  • H Als

    A synactive model of neonatal behavioral organization: Framework for the assessment of neurobehavioral development in the premature infant and for the support of infants and parents in the neonatal intensive care environment

    Phys Occup Ther Pediatr

    (1986)

    • Cited by (12)

    • What the Situation of Neonatal Death in the NICUs of Taiwan Is

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    • To explore the conditions of dying infants in NICU in Taiwan

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      Citation Excerpt :

      These comfort interventions included sedation, containment holding intervention, non-nutritive sucking, and holding. Walden and other researchers have proposed the importance of applying these comfort care for dying infants [12]. However, in this investigation, most research neonates still suffered some physiological distress without any comfort care while awaiting their parents' decision about death.

    • The Ten Commandments of Pain Assessment and Management in Preterm Neonates

      2009, Critical Care Nursing Clinics of North America
      Citation Excerpt :

      Therefore, caregivers must often consider risk factors for pain and rely on physiologic measures such as increases in heart rate and decreases in oxygen saturation to make pain management decisions. Pain management at end of life primarily centers on the provision of opioids to minimize pain and nonpharmacologic therapies to enhance the infant's comfort level.54 Continuous infusions of opioid therapy such as morphine and fentanyl are often required to manage pain at end of life and should be titrated to desired clinical response (analgesia).35

    • Ethics in Neonatal Neurology: When is Enough, Enough?

      2009, Pediatric Neurology

    • Implementing a palliative care program in a newborn intensive care unit

      2006, Advances in Neonatal Care

    • Behavioral Observation of Infants with Life-Threatening or Life-Limiting Illness in the Neonatal Intensive Care Unit

      2020, Nursing Research
    View all citing articles on Scopus
    ☆

    Address reprint requests to Marlene Walden, PhD, RNC, NNP, CCNS, 1912 Crescent Shore Dr, League City, TX 77573.

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    Copyright © 2001 W.B. Saunders Company. All rights reserved.