End of life in the neonatal intensive care unit

Abstract

PURPOSE:Death at the beginning of life is tragic but not uncommon in neonatal intensive care units. In Portugal, few studies have examined the circumstances surrounding the final moments of neonates. We evaluated the care given to neonates and their families in terminal situations and the changes that had occurred one decade later.DESIGN AND METHODS:We analyzed 256 charts in a retrospective chart review of neonatal deaths between two periods (1992-1995 and 2002-2005) in a level III neonatal intensive care unit.RESULTS:Our results show differences in the care of dying infants between the two periods. The analysis of the 2002-2005 cohort four years revealed more withholding and withdrawing of therapeutic activities and more effective pain and distress relief; however, on the final day of life, 95.7% of the infants received invasive ventilatory support, 76.3% received antibiotics, 58.1% received inotropics, and 25.8% received no opioid or sedative administration. The 2002-2005 cohort had more spiritual advisor solicitation, a higher number of relatives with permission to freely visit and more clinical meetings with neonatologists. Interventions by parents, healthcare providers and ethics committees during decision-making were not documented in any of the charts. Only eight written orders regarding therapeutic limitations and the adoption of palliative care were documented; seven (87.5%) were from the 2002-2005 cohort. Parental presence during death was more frequent in the latter four years (2002-2005 cohort), but only 21.5% of the parents wanted to be present at that moment.CONCLUSION:Despite an increase in the withholding and withdrawing of therapeutic activities and improvements in pain management and family support, many neonates still receive curative and aggressive practices at the end of life.

End-of-life care in a regional level IV neonatal intensive care unit after implementation of a palliative care initiative

“…One possible explanation for the increase in redirection of care to comfort care without a concomitant increase in family meetings is the conversations were in fact taking place but the documentation was not in place. Although others have shown a national trend toward withholding or withdrawing curative support over a decade in Portugal, 33 our study indicates an increase in redirecting care to comfort measures and an increase in palliative medication usage at the end-of-life associated with the implementation of a perinatal palliative care intervention.…”

Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010

“…Although infant mortality rates have declined since the 1990s (MacDorman & Gregory, 2013), infant deaths continue to represent over 55% of all childhood deaths (Osterman et al, 2015). Infants born with life threatening health conditions often spend their short lives in the neonatal intensive care unit (NICU) with limited access to both palliative and hospice care (Chavoski, Miller, & Siden, 2013; Moura, Costa, Rodrigues, Almedia, Maia, & Guimaraes, 2011). Recent examination of infant utilization rates of hospice care is often the lowest when compared to other pediatric age groups (Leuthner, Boldt, & Kirby, 2004; Lindley & Lyon, 2013; Lindley & Shaw, 2014).…”

The Meaning of Food and Multicultural Implications for Perinatal Palliative Care

“…Some parents may opt not to participate with their infant's care. Th at's their decision, and it shouldn't be judged (De Lisle-Porter & Podruchny, 2009). Some individuals may insist on having extra visitors, as it's expected that the dying aren't left alone, or due to cultural expectations of familial support for the parents.…”

“…Palliative care provides total, active treatment therapies to terminally ill infants and their families. Phrases such as "there's nothing more we can do, " or "withdrawal of care" may be interpreted as no further support services are available, or provider abandonment (De Lisle-Porter & Podruchny, 2009 providers should be aware that communication styles vary not only with culture but individually, and while Americans tend to value patient autonomy and individual decision-making, many other cultures are family-or society-based and make decisions as groups (Kagawa-Singer & Blackhall, 2001).…”