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Comfort/Palliative Care Guidelines for Neonatal Practice: Development and Implementation in an Academic Medical Center

Journal of Perinatology volume 21, pages 279–283 (2001)Cite this article

Abstract

OBJECTIVE: To report the multidisciplinary developmental process of a comfort care guideline for the neonatal intensive care unit (NICU) addressing palliative care measures in a tertiary academic medical center. The guideline was developed to be (1) practical, (2) family-centered, (3) respectful of the infant patient, and (4) educational.

METHODS: A consensus-building process involving medical, nursing, administrative, and ancillary professional staff integral to the NICU and Obstetrics units using naturalistic inquiry.

RESULTS: An approved hospital guideline was formulated and implemented over a 16-month period. It described candidates for comfort care, the locale for such care to be rendered, and the construct of essential services to the infant and family. Early reports attest to staff acceptance and it is currently incorporated into trainee education.

CONCLUSION: Clinically practical guidelines, comprehensive in their scope of providing comfort care to newborns with life-limiting conditions, can be institutionally derived and locally implemented for both consistency in patient care and educational value for staff and trainees.

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Authors and Affiliations

  1. Department of Pediatrics, Section of Neonatology, Medical College of Georgia, Augusta, GA

    Brian S Carter MD & Jatinder Bhatia MBBS

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  1. Brian S Carter MD
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  2. Jatinder Bhatia MBBS
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APPENDIX: GUIDELINES FOR NEONATAL COMFORT/PALLIATIVE CARE, MEDICAL COLLEGE OF GEORGIA HOSPITAL and CLINICS

APPENDIX: GUIDELINES FOR NEONATAL COMFORT/PALLIATIVE CARE, MEDICAL COLLEGE OF GEORGIA HOSPITAL and CLINICS

(I) In keeping with the principles of family-centered care, the purpose of these guidelines is to provide for appropriate and humane care in a concerned and dignified environment for non-viable live-born infants in accordance with Section 504 of the Rehabilitation Act of 1973.

(II) In view of uncertainty in immediate and long-term outcome for certain infants, and out of respect for parental values and wishes, these guidelines may be considered appropriate in at least three specific patient categories:

Extreme Prematurity

• Those infants born at extremely immature gestation (e.g., typically <24 weeks) and at extremely low birth weight (e.g., typically <500 g) determined to be incapable of prolonged extrauterine life.

• While death may be considered “imminent” (typically <2 h) without resuscitation or intensive care interventions, no prescribed estimated time of death is necessary to enact these comfort measures.

• The implementation of comfort care will follow consultation with the infant's parent(s) either prenatally or at the time of delivery when resuscitation decisions are made.

• Based upon local data, birth weights or gestational ages will only be used as absolute criteria when the weight is <500 g and the infant is not considered growth-restricted, or the obstetrical dating is verified to be <24 weeks by the examining Pediatric physician. In these circumstances, non-resuscitation may be appropriate.

• When uncertainty about viability exists, resuscitation and a trial of neonatal intensive care may be initially implemented but can continue only after reassessment of the infant's response and condition, and dialogue with the parents.

• Failure of the infant to respond to resuscitation will be communicated to the parent(s) whenever possible and comfort care initiated at that time.

Overwhelming Illness

• Some infants, regardless of gestational or post-natal age, who may, in the opinion of the Neonatology Staff and the parent(s), have exceeded the benefit of neonatal intensive care and life support or sustaining treatments are being withdrawn in the NICU (e.g., multi-organ system failure while being maintained on life support systems, fulminate necrosis of the gastrointestinal tract not amenable to surgical repair).

Lethal Anomalies

• Some infants, regardless of gestational or post-natal age, who have complex or multiple lethal congenital anomalies not compatible with prolonged neonatal life (e.g., Potter's Syndrome, anencephaly, thanatophoric dwarfism, trisomy 18 or 13) and for whom the parent(s) and the Neonatology Staff determine that intensive care is inappropriate.

(III) Guidelines:

• All live-born infant births of extreme immaturity will be assessed by the senior Pediatric physician in-house at the time of delivery (Third Year Pediatric Resident, Neonatology fellow, Staff Pediatrician or Staff Neonatologist).

• If the infant is not considered appropriate for resuscitation, the birth weight, New Ballard Gestational Age Assessment, and physical examination will be conducted in the delivery Room to determine the best estimate of gestational age. Review of all obstetric sonographic dating will be noted for EGA ≤25 weeks.

• If the infant is considered appropriate to receive resuscitation, it will be provided without delay.

• If resuscitation is not deemed appropriate, or has ceased due to non-responsiveness, the infant will be presented to the parent(s), if requested, for them to grieve privately in the delivery room. Should they not desire to do this or the infant survive beyond their interest to do this, the infant will be brought to the Hospice Nursery on 7 West.

• Re-evaluation for comfort/palliative care may occur at any time.

• Infants in the 7 West Hospice Nursery or in the NICU receiving hospice care will be provided comfort care.

• Physician Orders and Nursing Care Plans will address cleaning, drying, clothing, or warmly wrapping the infant and placement in an open bassinet without cardiorespiratory monitors.

• The infant's chart will indicate estimated gestational age, birth weight, physical examination findings, post-natal age if appropriate, assessment of non-viability, discussion of the infant's condition with the parents, and comfort/palliative care plans.

• Physician Orders and Nursing Care Plans will indicate comfort care measures (above) and a “DNR” status.

• Pain medications, or sedation, may be prescribed if deemed appropriate by the physician.

• Family will be encouraged to visit and hold the baby in the 7 West Hospice Nursery.

• If family desires to visit and hold the baby receiving palliative care in the NICU, privacy and staff support will be provided; the Family Care Room in the NICU will be used, if available.

• During transition from birth until death, Social Work Services may be consulted and a Chaplain or parent's preferred clergy member called, if so desired.

• A member of the Bereavement Service will be contacted for assistance whenever possible.

• Nursing support for perinatal loss and grieving will be enacted in addition to regularly made assessments to document vital signs (every 30–60 min).

• When vital signs are no longer detectable, a physician will be called to pronounce death.

• At the time of death, the infant's physician will appropriately counsel the parents about autopsy and organ donation.

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Carter, B., Bhatia, J. Comfort/Palliative Care Guidelines for Neonatal Practice: Development and Implementation in an Academic Medical Center. J Perinatol 21, 279–283 (2001). https://doi.org/10.1038/sj.jp.7210582

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