The Best Interests of Infants and Families During Palliative Care at the End of Life

Abstract

Background: Palliative care is an integral element of care provision in neonatal intensive care units (NICUs). Healthcare providers working in NICUs are likely to provide palliative care at some point in their career. Purpose: This article examines what neonatal palliative care entails, how parents perceive healthcare providers' actions, what they potentially need at the end of their infant's life, and what bereavement interventions are most supportive for parents. Search Strategy: We conducted a search of full-text articles published in English in PubMed and CINAHL using the following key words: “NICU bereavement care,” “end-of-life care,” “infant loss,” and “palliative care.” Findings: Healthcare providers should consider alleviation of the infant's pain and suffering when discussing whether to provide or continue aggressive medical interventions. The timing of these discussions is important. Parents appear to be most comforted by compassionate, caring healthcare providers who show competence and knowledge in the provision of medical/nursing and palliative care. Implications for Practice: Healthcare providers working in NICUs require specific training in bereavement/palliative care for infants. Families facing the death of their infant must receive support from qualified providers both during and after that death. Furthermore, the infant's quality of life must be considered when discussing withholding or withdrawing care. Implications for Research: There is a need for further research investigating the specific types of training required by healthcare providers in NICU settings who are providing bereavement/palliative care to neonates, in order to best support the families' needs in these situations.

Parental bereavement – impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review

“…Honest, timely, personalised, empathetic, kind, culturally sensitive and respectful support enable healthcare professionals to provide more effective ‘external’ and longitudinal assistance to parents [ 115 , 118 , 120 , 129 , 130 , 133 , 137 , 139 , 146 , 149 , 150 , 167 , 181 ]. It also helps to affirm parents of their place in society [ 81 , 82 , 133 , 136 – 139 , 148 , 163 , 176 ].…”

“…Remembering the child [ 87 , 89 , 90 , 106 , 109 , 132 ] (memory boxes, commemorating anniversaries) [ 82 , 89 , 92 , 95 , 96 , 115 , 116 , 127 , 138 , 156 – 158 ]…”

“…On the other hand, being aware of the child's prognosis helped prepare some parents [110,112]. Direct, timely, and personalised communications [113], effective end of life care [111,[114][115][116][117][118][119][120][121][122][123][124], respect for advance care planning (ACP) [111] and parental involvement in care determinations also assuaged parental grief [84,125,126].…”

“…Parents who could share their feelings [127,128], and received guidance [116,117,119,127,129,130] and frequent updates on their child's prognosis and health status [131,132] in an honest [120], under-Fig. 3 PRISMA flow chart standable [133], consistent [114,117,128], compassionate [90,111,115,118,119,134] and culturally sensitive manner [87,117,128,135,136] coped better and suffered less grief [88,90,120,127,129,131,133,[136][137][138][139][140][141][142]. Parents found that being present at their child's death [140,143] ameliorated the grieving process [134,140] as "seeing and holding or being allowed to touch and hold helps the bereaved person adapt to the loss and say goodbye"…”

Fifty Years of Progress in Neonatal and Maternal Transport for Specialty Care

“…In spite of advances in care of preterm and critically ill neonates, some have adverse and lifelimiting outcomes. Neonatal palliative care provides an opportunity to improve quality of life when the goal of care is no longer prolongation of life or the prognosis is uncertain (Parravacini, 2017;Sieg et al, 2018 Care for Newborns and Infants" recommended that all neonatal nurses be trained to offer palliative and end-of-life services to infants and their families. The desired outcome of neonatal palliative care is the provision of comfort; relief of pain, discomfort, and other negative sequelae for the infant; and an opportunity for parents to bond with and participate in the care and decision making related to their infant (Parravicini, 2017).…”