Objective:To identify the goals and methods for medical education about end-of-life care in the intensive care unit (ICU).Data Sources and Study Selection:A status report on palliative care, a summary report of recent research on palliative care education, articles in the medical literature on end-o

Incorporating palliative care into critical care education: principles, challenges, and opportunities.

This policy statement is the first formal statement of the American Academy of Pediatrics on the issue of hospital discharge of the high-risk neonate. It has been developed, to the extent possible, on the basis of published, scientifically derived information. Four categories of high risk are identified: 1) the preterm infant, 2) the infant who requires technological support, 3) the infant primarily at risk because of family issues, and 4) the infant whose irreversible condition will result in an early death. The unique home care issues for each are reviewed within a common framework. Recommendations are given for four areas of readiness for hospital discharge: infant, home care planning, family and home environment, and the community and health care system. The need for individualized planning and physician judgment is emphasized.

https://pediatrics.aappublications.org/content/pediatrics/102/2/411.full.pdf

Hospital Discharge of the High-Risk Neonate—Proposed Guidelines

Objective. Neonates and infants have the highest death rate in the pediatric population, yet there is a paucity of data about their end-of-life care and whether a palliative care service can have an impact on that care. The objective of this study was to describe end-of-life care for infants, including analysis of palliative care consultations conducted in this population. We hypothesized that the palliative care consultations performed had an impact on the infants9 end-of-life care. Design. A retrospective chart review using the “End of Life Chart Review” from the Center to Improve Care for the Dying was conducted. The participants were the patients at Children9s Hospital of Wisconsin who died at Results. Among the 196 deaths during the study period, 25 (13%) of these infants and families had palliative care consultations. The rate of consultations increased from 5% of the infant deaths in 1994 to 38% of the infant deaths in 1997. Infants of families that received consultations had fewer days in intensive care units, blood draws, central lines, feeding tubes, vasopressor and paralytic drug use, mechanical ventilation, cardiopulmonary resuscitation, and x-rays, and the families had more frequent referrals for chaplains and social services than families that did not have palliative care consultations. Conclusions. This study describes the end-of-life care that infants and their families received. Fewer medical procedures were performed, and more supportive services were provided to infants and families that had a palliative care consultation. This suggests that palliative care consultation may enhance end-of-life care for newborns.

End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service.

The notion of Palliative Care (PC) in neonatal and perinatal medicine has largely developed in recent decades. Our aim was to systematically review the literature on this topic, summarise the evolution of care and, based on the available data, suggest a current standard for this type of care. Data sources included Medline, the Cochrane Library, CINAHL, and the bibliographies of the papers retrieved. Articles focusing on neonatal/perinatal hospices or PC were included. A qualitative analysis of the content was performed, and data on the lead author, country, year, type of article or design, and direct and indirect subjects were obtained. Among the 1558 articles retrieved, we did not find a single quantitative empirical study. To study the evolution of the model of care, we ultimately included 101 studies, most of which were from the USA. Fifty of these were comments/reflections, and only 30 were classifiable as clinical studies (half of these were case reports). The analysis revealed a gradual conceptual evolution of the model, which includes the notions of family-centered care, comprehensive care (including bereavement) and early and integrative care (also including the antenatal period). A subset of 27 articles that made special mention of antenatal aspects showed a similar distribution. In this subset, the results of the four descriptive clinical studies showed that, in the context of specific programmes, a significant number of couples (between 37 and 87%) opted for PC and to continue with the pregnancy when the foetus has been diagnosed with a lethal illness. Despite the interest that PC has aroused in perinatal medicine, there are no evidence-based empirical studies to indicate the best model of care for this clinical setting. The very notion of PC has evolved to encompass perinatal PC, which includes, among other things, the idea of comprehensive care, and early and integrative care initiated antenatally.

/pdf/the-model-of-palliative-care-in-the-perinatal-setting-a-t9ybi5ag10.pdf

The model of Palliative Care in the perinatal setting: a review of the literature.

Parental adaptation following perinatal loss has received increasing attention in the past 20 years. From early anecdotal accounts to recent more rigorous investigations, it is clear that perinatal loss in the developed world is a significant psychological trauma for parents. Major immediate consequences are likely for virtually all affected families, and long-term sequelae are likely for some. Despite widespread attention to the experience of families who lose a stillborn or newborn infant, including major changes in hospital practices regarding management of these families, many important questions remain unanswered. We know little, for instance, about which parents are at greatest risk for disordered mourning or what additional measures might minimize their psychological morbidity. In fact, because of a tendency to focus exclusively on affective symptomatology following the loss, other important features of the process of mourning have been overlooked or examined unsystematically. Suggestions for specific and general directions for further research are discussed.

Adaptation following perinatal loss: a critical review.

• Despite impressive improvements in outcome for infants cared for in neonatal intensive care units (NICUs), large tertiary-care referral units still admit a substantial number of infants who will not survive or, because of a predictably very poor outcome, should not be offered modern life-support techniques. Dealing with these infants can be extremely taxing on both the family and the staff. We have recently adapted the concepts first described in adult hospice care to the care of the dying neonate and his family. By providing a "Family Room" that is private yet close to the NICU and by training the staff in more supportive approaches toward these families, we have been able to deal with the problem of the dying newborn in a manner that has been beneficial to both families and staff. (Am J Dis Child1982;136:421-424)

https://jamanetwork.com/HttpHandlers/ArticlePdfHandler.ashx?journal=peds&articleId=510448&pdfFileName=archpedi_136_5_009.pdf

Linda K. Powers

Papers

The application of hospice concepts to neonatal care.