Palliative care in the neonatal intensive care unit

With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that provides guidance to health professionals. Providing holistic perinatal palliative care depends on close multiprofessional working between the neonatal team and the palliative care professionals who are being integrated into the core neonatal services. Even though most neonates will continue to receive end of life care within the NICU, there are increasing number of families who choose to have end of life care either at home or a hospice. There is a need to develop services across the regions to provide equitable access to excellent clinical care as well as ongoing support to families following loss of a neonate. This short article explores the issues raised in the provision of palliative care in the perinatal period and offers practical guidance for paediatricians in this emerging area.     

Wound care in the neonatal intensive care unit

The skin is a vital organ with key protective functions. Infants in the NICU are at risk for skin injury because of developmental immaturity and intensive care treatments. When skin injury occurs, the neonatal nurse is challenged to provide wound care to optimize functional and cosmetic healing. Optimal wound care requires basic knowledge of the mechanisms of injury, physiology of wound healing, host factors affecting wound healing, and wound assessment. This knowledge provides the basis for determining appropriate wound treatment, including dressing selection. Attention to pain issues associated with wound care is difficult because of the infant's developmental stage, but is essential because of the potentially negative life-long impact of pain. The premature infant's propensity for skin stripping limits the selection of appropriate dressing, as does the paucity of research examining wound care products in this population.     

Covering the costs of care in neonatal intensive care units.

The continued rise of health care costs, despite private and governmental control efforts, has sustained cost containment as a central issue for health care researchers and policy makers. In keeping with these concerns, the Florida Health Care Cost Containment Board conducted a study of neonatal intensive care units (NICUs) in Florida to ascertain the costs, charges, and net revenues associated with NICU services in individual hospitals, to document cost shifting and cross-subsidization as a means of financing NICU care for indigent populations, and to assess the fiscal impact of NICUs in state-sponsored vs non-state-sponsored Regional Perinatal Intensive Care Center hospitals providing NICU care. Hospitals in the state-sponsored program reported a loss of approximately $16.5 million in contrast to the non-state-sponsored hospitals, which reported a gain of $1 million. Payment being generated by private-pay patients amounted to almost 60% of total revenues but constituted less than one third of the costs in state-sponsored hospitals, indicating a high level of cost shifting. Government support of state-sponsored NICUs, while substantial, has been insufficient; increasing constraints on this funding source would likely worsen the deficit and increase the necessity of cost shifting.     

Emergency care of the child

Optimal emergency care of the child requires a well-developed EMS-C system. The components are easy to identify. We need macroregions with institutions acknowledging their institutional capabilities for pediatric emergency care and supporting field triage and transfer agreements. We need highly educated and skilled prehospital care providers, from emergency medical technicians in the field to air and ground transport services with specialized pediatric transport teams. In addition to having an appropriate hospital emergency department attending physician staff, hospitals must develop networks of cooperation between emergency departments appropriate for pediatrics and children's emergency care centers. These centers strive for quality care through systematic record keeping, chart reviews, and audits identifying care deficiencies and appropriate remedies. Subsequent reviews document improved care. There are meetings of prehospital and hospital-based providers to discuss the management of challenging cases. Comprehensive pediatric emergency care involves integration of emergency stabilization patient care with community and hospital social services, patient education programs (such as Child Life), and comprehensive rehabilitation programs, as well as community accident prevention and basic life support programs. As we strive to develop optimal emergency medical services for our country to best serve our people, comprehensive emergency care of children must have separate consideration from comprehensive emergency care of adults. If we are to assure optimal outcome for the life-threatened child, we need to continuously assess regional needs and capabilities and encourage optimal involvement of health care providers and institutions.     

Medical care of the athlete

Atheletics involve many health hazards for children. The possibility for injury is present and participation means a calculated risk. To justify the risks, the benefits must outweigh the dangers. Sports, suitably engaged in, promote both physical and mental health. As pediatricians we become involved on two occasions: during the preseason examination to determine the child's fitness to participate, and when injury has occurred. Adequate examining means an understanding of what is involved to participate, promoting safety standards, and equitable competitive situations.     

Adoption, permanent care and foster care: home-based care in and beyond the 1990s

Home-based care in Australia has changed considerably in the past two decades. The majority of children in adoptive, permanent care and foster families are likely to have experienced abuse, neglect and multiple placements. The disruptive behaviours displayed by these children undermine the potential for attachment offered by their new families. While the needs of the child will be obvious, the challenge for paediatricians is to recognize the relative instability of these newly established families and the high levels of stress they experience.     

Tools to guide the identification and implementation of care consistent with the psychosocial Standards of care

Fifteen evidence‐based Standards of psychosocial care for children with cancer and their families have been established. Despite the importance of implementing the standards, significant barriers and challenges exist. In order to overcome barriers to implementation and assess the level of current psychosocial care, a model of evaluating psychosocial care (Matrix) and a set of pathways toward achieving optimal care (Guidelines) were developed. This special report describes the process involved in the creation of standard templates and development of content based on rigorous reviews from multidisciplinary psychosocial experts, focus groups, and multiple revisions based on further expert review. The resulting Matrix and Guidelines are included as Supplemental Information.     

Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination

Most parents of children with cancer have dual primary goals: a primary cancer-directed goal of cure and a primary comfort-related goal of lessening suffering. Early introduction of palliative care principles and practices into their child's treatment is respectful and supportive of these goals. The Individualized Care Planning and Coordination Model is designed to integrate palliative care principles and practices into the ongoing care of children with cancer. Application of the model helps clinicians to generate a comprehensive individualized care plan that is implemented through Individualized Care Coordination processes as detailed here. Clinicians' strong desire to provide compassionate, competent, and sensitive care to the seriously ill child and the child's family can be effectively translated into clinical practice through these processes.     

Follow-up care of the extremely preterm infant after discharge from the neonatal intensive care unit

The survival of babies born extremely preterm (EP, <28 weeks gestation) has improved over time, and many have good outcomes and quality of life. They remain at risk for health issues, including neurosensory and neurodevelopmental difficulties requiring monitoring by primary physicians, paediatricians, and specialty clinics. This statement reviews potential medical and neurodevelopmental consequences for EP infants in the first 2 years after discharge and provides strategies for counselling, early detection, and intervention. EP-related conditions to assess for early include bronchopulmonary dysplasia or respiratory morbidity, feeding and growth concerns, neurosensory development (vision and hearing), cerebral palsy, and autism spectrum disorder. Correction for gestational age should be used for growth and development until 36 months of age. Integral to quality care of the child born EP is attention to the emotional well-being of parents and caregivers.     

Reorientation of care in the NICU

Where possible, both parents should be present whenever bad news is broken. Professional calm and carefully chosen words are essential. Staff must be aware of cultural and religious beliefs of the family, and should be cognizant of linguistic and educational capabilities. The unexpected collapse and death of an infant is rare but is exceptionally demanding on communication skills. Time must be given for the family to ask questions, and staff should acknowledge the tragedy and the uncertainty, but should convey a determination to discover the truth for the family. A predictable deterioration allows staff and family to work together towards a "guided consensus" over future management. Compassionate care involves time, comfort and dignity for the child and parents. It is crucial for the family to receive empathetic support from senior nursing and medical staff. Mementoes may help the grieving process. Necropsy may also play an important role in allowing the families to rebuild their lives.     

Evolution of the perinatal care system

BACKGROUND: The perinatal support system for mothers and babies, which has evolved over the past 6 years at the Morioka Red Cross Hospital, is described. METHODS: Between July 1995 and August 1999, 1864 puerperal mothers at the Morioka Red Cross Hospital responded to the Maternity Blues Scale (MB) and the Edinburgh Postnatal Depression Scale (EPDS) at 1 month, each with an open comment form. RESULTS AND DISCUSSION: There was a significant difference in each MB item between individuals who scored above 9 points and those who scored lower in the EPDS. Those who later scored high in the EPDS had responses to a preceding MB where we had checked items of 'confusion', 'experience of crying', 'anxiety', 'exhaustion', 'feeling depressed', 'nervousness', 'agitation' and 'forgetfulness'. Administration of the MB and provision of a free comment form significantly decreased EPDS scores. Ensuring that the views of mothers are acknowledged within the context of an adequate care system is central to effective perinatal care.     

Conservative care of the newborn baby

A method of managing ill and premature babies with little disturbance is described. The results of such care during 1969-76 compare favourably with those achieved by more intensive and active intervention.