Guidelines to achieve a state
of comfort for newborns treated with palliative care

BONDING

  • Holding, skin-to-skin care

  • Provide parents the opportunity to take care of their baby’s needs (breast/bottle feeding, nutrition via NG/OG/G-tube, diaper change, bath, dressing, etc.)

  • Provide parents the opportunity to help with their baby’s medical needs (taking temperature, suctioning, help with medical dressing, etc.)

  • Bonding is promoted in delivery room, on the post-partum floor while the baby rooms-in with the mother or in the NICU. A private space should be provided. If no family members are available, the baby is held by health care personnel or trained volunteers.

MAINTENANCE OF BODY TEMPERATURE

  • Skin-to-skin care, holding

  • Warmer, heat lamps, swaddled in blankets

RELIEF OF HUNGER/THIRST

  • Breast/bottle feeds (breastfeeding/lactation consultant/speech pathologist support)

  • Special nipples or devices (speech pathologist support)

  • Use of NG/OG/G-tube as appropriate

  • Infant NPO or end-of-life care: colostrum care, sucrose drops, non-nutritive strategies (speech pathologist support)

ALLEVIATION OF DISCOMFORT/PAIN

  • Assessment of respiratory distress (air hunger, agitation, increased work of breathing, gasping) and use of non-pharmacological strategies (gentle suctioning upper airways, positioning) or pharmacological treatment (Morphine Sulfate PO/IV; Fentanyl IN; Lorazepam PO/IV; Midazolam IN)

  • Assessment of pain by validated clinical scores (NIPS or PIPP) and use of nonpharmacological strategies (positioning, skin-to-skin, sucking) or pharmacological treatment (Acetaminophen PO/PR; Morphine Sulfate PO/IV; Fentanyl IN; Lorazepam PO/IV; Midazolam IN)

NG: nasogastric; OG: orogastric; G-tube: gastric tube; NPO: nil per os; PO: per os; PR: per rectum; IV: intravenous; IN: intranasal; NIPS: neonatal infant pain scale; PIPP: premature infant pain profile.

Resources
for Download

Other Resources

WEBSITES 

PERINATAL HOSPICE & PALLIATIVE CARE (PHPC)
The most comprehensive and up-to-date website related to Perinatal Palliative Care (PPC). It includes listings of all existing programs in the U.S. and internationally. PHPC provides resources for parents, including videos, testimonials, books, websites of interest, link for on-line forum, and bereavement resources. Resources for caregivers include medical videos, books, hundreds of scientific articles relevant to PPC, and information for conferences, training courses and online education.

SUPPORT ORGANIZATION FOR TRISOMY (SOFT)
The most comprehensive website related to trisomy 18, 13 and other related disorders. SOFT was launched in 1980 and is currently associated with nearly 2,000 families and 250 professionals. It provides a large number of written and video resources for families at any stage of the diagnosis, and throughout life. SOFT also provides resources for medical professionals including growth charts, literature, and information about potential medical and surgical treatments.

HLHS COMFORT CARE
A collection of family stories / testimonials. HLHS Comfort Care also provides resources about the non-surgical option for babies with hypoplastic left heart syndrome.