Why Is End-of-Life Care Delivery Sporadic?

Wright, Valerie; Prasun, Marilyn A.; Hilgenberg, Cheryl

doi:10.1097/anc.0b013e3182085642

Cited by 61 publications

(41 citation statements)

References 15 publications

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“…23 Furthermore, NICU nurses strongly believe that providing pain relief should be a priority during the dying process. 24 Lack of documentation may have partly been a function of the flurry of activities surrounding the infant’s entry into EOL care. Or, nurses may not be consistently at the bedside and in a position to observe subtle changes at the EOL as they may be carrying out other duties or have stepped back to allow the family private time with their infant.…”

Section: Discussionmentioning

confidence: 99%

Medical Record Documentation and Symptom Management at the End of Life in the NICU

Fortney

Steward

2015

Advances in Neonatal Care

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Purpose In neonates, the course of illness is often unpredictable and symptom assessment is difficult. This is even truer at the end-of-life (EOL). Time to death can take minutes to days, and ongoing management of the infant is needed during the time between discontinuation of life-sustaining treatment and death to ensure the infant remains free of pain and suffering. The symptoms experienced by neonates as they die, as well as best ways to treat those symptoms, are understudied. The purpose of this study was to examine symptoms exhibited by neonates at the EOL and the treatments utilized to manage those symptoms as documented in the medical record during the last 24 hours of life. Subjects The sample included 20 neonates who died at a large children’s hospital Design This was an exploratory, descriptive study. Methods Descriptive data, such as diagnosis, on-going therapy at time of treatment withdrawal or withholding, pharmacologic and non-pharmacologic interventions associated with treatment withdrawal, time of treatment withdrawal and death, age at time of death, signs and symptoms exhibited during EOL care, and pain scores, was abstracted from the infant’s medical record. Main Outcome Measures Inadequate documentation in the medical record resulted in missing data that made it not possible to fully explore aspects of symptom management during the last 24 hours of life, however some important results were found. Principal Results Importantly, this study showed a difference in the way neonates approach the EOL period. Other findings were that most infants in the study received pain medication even though pain scores were infrequently documented and drug dosages varied across infants. Finally, documentation of non-pharmacologic interventions utilized at the EOL was also lacking.

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Section: Discussionmentioning

confidence: 99%

Medical Record Documentation and Symptom Management at the End of Life in the NICU

Fortney

Steward

2015

Advances in Neonatal Care

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“…As for the medical team, it is common for a fatal prognosis to lead to a sense of failure 2 5 , 6 When the death of a child approaches, conflicts arise and there is a need to discuss legal and ethical issues 5 7 , 8 …”

Section: Introductionmentioning

confidence: 99%

Análise Dos Óbitos E Cuidados Paliativos Em Uma Unidade De Terapia Intensiva Neonatal

Marçola

Barbosa

Zoboli

et al. 2017

Rev. paul. pediatr.

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Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it.Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis.Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores.Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children.

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“…Similarly, both support from colleagues and guidelines were reported by nurses in a neonatal intensive care unit to be helpful as facilitators for end-of-life care. 21 A Swedish government report proposed continuous education and supervision for all HCWs working in palliative care, emphasizing dedicated time for reflection and the importance of interdisciplinary collaboration. 42 Following these guidelines might give room for 'presence', regardless of where the dying child is cared for.…”

Section: Discussionmentioning

confidence: 99%

“…These units are often ill prepared to deal with the death of a child and can fail in readiness to care for dying children and their families. 11,21,25,27 In summary, palliative paediatric care has been found demanding, not least for the HCWs, particularly when caring for dying children in units not specialized to their needs. Consequently, there is a need to further investigate HCWs' experiences of caring for dying children in the specific context of general paediatric care units whose main focus is short-term illness and acute curative care.…”

Section: Introductionmentioning

confidence: 98%

“…[14][15][16][17] Painful treatments and families' emotional burdens have been linked to nurses' burnout combined with compassion fatigue, 18 and caring for a child who could not recover reportedly brought suffering. 19 Occupational stress in children's palliative care occurs regardless of location, 1 both in cancer care 20 and neonatal intensive care, 21 but combining work with patients in both curative and palliative phases seems to be particularly challenging. 22 The needs of a dying child depend inter alia on the child's developmental stage.…”

Section: Introductionmentioning

confidence: 99%

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