Parent Involvement in End-of-Life Care and Decision Making in the Newborn Intensive Care Unit: An Integrative Review

Abstract

Survival rates for very preterm and critically ill infants are increasing, raising complex ethical issues for health-care providers and parents who face the challenge of making end-of-life decisions for newborns. The purpose of this integrative literature review was to evaluate parental involvement in end-of-life care and decision making for their infant in the newborn intensive care unit. Findings revealed that establishing good relationships and clear communication between health-care providers and parents builds trust and eases stress placed on parents making decisions about the care of their infant. Palliative care programs provide support for parents and facilitate their decision making. Parents can be educated about how to communicate with health-care providers. Educating nurses on how to provide end-of-life care may also help improve support for parents during this difficult time. Additional research is recommended to examine parents' needs during and after end-of-life care decisions for their newborn.

Death, bereavement and randomised controlled trials (BRACELET): a methodological study of policy and practice in neonatal and paediatric intensive care trials

“…It can also be a challenging professional environment, [17][18][19][20][21][22] but clinicians build up expertise over time and often develop strategies to deal with and manage difficult situations. 23 Death in the NICU or PICU can bring with it a number of very difficult experiences for parents in addition to the loss of their child, such as end-of-life decision-making, [24][25][26][27][28][29][30] the experience of withdrawal of care and the impact of lingering death, 31,32 loss of a multiple (e.g. a twin or triplet) 28 and multiple losses, 33 and the need to consider post-mortem examinations 34 (for a review of studies of end-of-life decision-making in the NICU see Eden and Callister; 32 for decision-making more generally in the PICU, see Madrigal and colleagues 35 ).…”

“…23 Death in the NICU or PICU can bring with it a number of very difficult experiences for parents in addition to the loss of their child, such as end-of-life decision-making, [24][25][26][27][28][29][30] the experience of withdrawal of care and the impact of lingering death, 31,32 loss of a multiple (e.g. a twin or triplet) 28 and multiple losses, 33 and the need to consider post-mortem examinations 34 (for a review of studies of end-of-life decision-making in the NICU see Eden and Callister; 32 for decision-making more generally in the PICU, see Madrigal and colleagues 35 ). Studies of parental experiences of death in the ICU suggest that they value clear information given around the time of their child's death, 36 appreciate acts of kindness from ICU staff in their bereavement, 37 and often want further contact with ICU clinicians.…”

End-of-Life Care in the Neonatal Intensive Care Unit: Experiences of Staff and Parents

“…This is in contrast to other studies in which parents suggest that a healthcare professional trained in end-of-life care who explained the timeline and process of dying would be helpful and could actually empower them in their caregiving. 16,[27][28][29] This difference may simply be due to the limited study population size. Also, every end-of-life experience is unique and every family has different views, previous experiences, values, and cultures that make their needs and desires for outside help and guidance during this personal time variable.…”

“…13,14 Palliative care consultations lead to fewer resuscitation attempts and life-sustaining treatments that merely prolong the dying process, fewer invasive procedures, and greater parental support. 15,16 Despite these advantages, NICU providers and parents may have different perceptions regarding the conversations that are appropriate or helpful surrounding ethical and end-of-life decisions. 17 These differences can leave parents with questions, concerns, regret, or ill-feelings.…”

“…17 These differences can leave parents with questions, concerns, regret, or ill-feelings. 16,17 Recent studies have examined parents' views around end-of-life experiences for children and infants. However, data specific to NICU setting are limited.…”