Organization of Care and Quality in the NICU
Richard Powers
Carolyn Houska Lund
Providing current, research-based care to critically ill new borns requires the collaboration of highly skilled, dedicated, and motivated caregivers from a variety of disciplines. Professional nurses, physicians, respiratory therapists, social workers, developmental care specialists, pharmacists, clinical dieticians, and occupational and physical therapists have roles to play in planning, implementing, and evaluating care for infants and their families in the neonatal intensive care unit (NICU). This chapter includes a brief review of the basic organization and components of the NICU. An in-depth discussion of quality improvement is presented, including the systems to monitor and improve the quality of care in the NICU. These systems involve all professional disciplines and are integral in providing care to high-risk infants.
ORGANIZATION OF CARE
The organization of care in the NICU includes the medical staff working in collaboration with nursing and other departments in the care of patients in the NICU. Decisions about delivery of care, unit philosophy, and future directions are best made through this collaborative process rather than by any one department or discipline.
However, most NICUs are organized structurally and financially around the nursing component. The organization and functioning of a NICU is dependent on nursing leadership that can provide knowledgeable support and nursing input for the following functions: strategic planning, budget development and implementation, staff development, education, quality assurance and improvement, interdepartmental collaboration, and clinical standards development.
Nursing leadership is provided by nurses with advanced education, training, and experience in the following roles: nurse manager, clinical nurse specialist (CNS), neonatal nurse practitioner (NNP), nurse educator, transport or extracorporeal membrane oxygenation (ECMO) coordinator, and case manager. Depending on the size and complexity of the NICU, some of these roles may be combined.
Caregivers who work in the NICU require emotional support because of the high stress and sensitive nature of their work with critically ill infants and families. The nursing leadership group actively seeks out situations that are stressful to staff and provides support to staff through stress debriefing and staff case conferences. Referrals to hospital ethics committees and appropriate professionals such as psychologists, psychiatric nurse liaisons, chaplains, and employee assistance programs should be made early to assist staff when needed.
Nurse Manager
The nurse manager has overall responsibility for the day-to-day operation of the NICU and for coordinating and collaborating with the medical staff, other department directors, and nursing managers from other units. The manager is usually expected to plan and implement both capital and operations budgets. Further, the manager works with the nursing leadership team to ensure that education, ongoing development, and competency of the nursing staff are attained. The nursing leadership group, in collaboration with the medical team and ancillary disciplines, is also responsible for assuring that the quality of care delivered in the NICU is safe and appropriate, meets regulatory standards, and demonstrates a commitment to ongoing quality improvement.
Although the nurse manager and nursing leadership group are accountable for the care delivered in the NICU, the staff nurses are the keystones of care delivery. Therefore, facilitating staff participation at every level of decision making is critical to the success of any unit operations. In some units, this collaboration may be formalized through a system of shared governance in which staff nurses are empowered to govern many aspects of unit operations. However, even in more traditional organizational
structures, participation by staff is critical to the successful operation of the unit.
structures, participation by staff is critical to the successful operation of the unit.
Advanced-practice Nurses
The CNS is an advanced practice nurse at the master’s degree level. In a nonline position in the nursing structure, the CNS generally has no direct authority over other staff. The CNS role involves direct clinical care, consultation to nursing staff and other professionals, and education of staff and parents. Research is a component of the CNS role, and this is accomplished by keeping abreast of current research applicable to neonatal care, implementing research-based practices, supporting and facilitating research efforts in the NICU, and participating in research studies as primary investigator or co-investigator. Maintaining quality of care is another aspect of CNS practice; monitoring care practices, identifying problems, and participating in the NICU multidisciplinary practice committee are essential aspects of the CNS role and its effective implementation in the NICU (1).
Many units use the CNS in case management functions. Case management, a model of care delivery, focuses on multidisciplinary care throughout hospitalization to achieve desired patient outcomes in an expected time frame and with efficient use of resources (2,3). Within this model, the CNS follows a caseload of patients throughout their lengths of stay in the NICU, consulting with nursing staff, physicians, and other team members about the patients’ expected courses and any variations that occur. The CNS coordinates the interdisciplinary model through weekly interdisciplinary rounds to discuss medical and social aspects of care for each infant in the NICU and identify needed interventions, procedures, or family communication. The CNS may identify a need for individual patient care conferences during which medical staff, nurses, and specialty consultants discuss a complicated patient and establish reasonable goals with evaluation criteria.
The NNP has formal education and certification in the medical management of high-risk newborns. NNPs generally carry a caseload of neonatal patients with consultation, collaboration, and supervision from a neonatologist. With extensive knowledge of physiology, pathophysiology, and pharmacology, the NNP functions both independently and interdependently with physicians in the assessment, diagnosis, and implementation of specific medical practices and procedures. Other responsibilities may include delivery room resuscitation, stabilization and transport either within the hospital or to other facilities, education, consultation, and research at varying levels (1,4,5). In addition to advanced-practice nurses, other nursing roles include neonatal clinical educators, outreach educators, transport nurses, discharge planners, nursing shift coordinators, and ECMO specialists.
The role of the charge nurse in the NICU is an important leadership position in the daily operations of the unit. Charge nurses may be nurse managers, shift coordinators, or experienced staff nurses responsible for the smooth functioning of the unit during each shift in a 24-hour day. Among their responsibilities are evaluating the number and level of acuity of all infants to determine the number of nursing and support staff required, and communicating the assignments of patients and staff. Charge nurses also arrange incoming and outgoing transports and may, in some settings, attend high-risk deliveries. They are often the “extra pair of hands” needed during emergency situations or special procedures, are consulted by other nurses in problem situations and conflict resolution, and become involved in crisis intervention with families. Astute assessment and problem-solving skills, along with excellent communication abilities, are necessary in the successful implementation of the charge nurse role and the daily running of the NICU.
Staff nurses help families in their adaptation to and resolution of crisis by providing consistency in the delivery of daily nursing care. Infants are regularly assigned to a nurse or a group of nurses on admission or shortly thereafter, and consistent care is delivered by this primary nurse or primary team throughout the hospital course.
Primary nurses provide direct patient care, organize and write individual care plans, and collaborate with the neonatologist, social worker, and advanced-practice nurse to facilitate the smooth transition of the infant throughout the hospital stay and discharge from the NICU. They have extensive knowledge about the individual responses of patients for whom they care on a daily basis and are invaluable to the neonatologist and other team members. Primary nursing care lends itself well to the developmental care that is specific in both assessment and interventions aimed at the individual needs and unique characteristics of neonatal patients.
Primary nursing is highly valued by families of infants in the NICU. Seeing the same person caring for their infant is comforting and establishes trust during this period of crisis and disequilibrium for families. Families often share their feelings and reactions with someone they have come to know and trust; this is often the primary nurse.
Other essential roles are necessary for the safe and effective functioning of the NICU. Respiratory specialists provide expertise in the NICU in areas of pulmonary care and assisted ventilation. Clinical dieticians consult regularly for both parenteral and enteral nutrition issues. Pharmacists assist regarding the safe and appropriate use of the multitude of medications administered in the NICU, as well as monitoring for adverse drug reactions and side effects. Developmental specialists, along with occupational and physical therapists, are responsible for the integration of developmentally appropriate interventions for specific infants, as well as educating other team members about developmental care and assisting in environmental modifications which can improve patient comfort and possibly even outcomes. Social workers assist in crisis intervention and provide psychosocial assessment and emotional support as they advocate for the wide range of families that encounter the NICU experience. In culturally diverse settings, translators are indispensable in the NICU to ensure that information is accurately provided to families.
Family-centered Care
The initial phase of hospitalization for high-risk infants results in significant disequilibrium for families. The expected outcome of their pregnancy has been changed from a healthy, full-term newborn to a premature newborn or a newborn with significant medical or surgical problems. With prenatal detection of problems, as well as perinatal care for premature labor, the families may have some idea of the situation they are facing. Yet, many have not faced a crisis of such importance and may need help in developing coping skills, understanding complicated medical information, and learning how to be an advocate for their infant. Nurses use therapeutic communication, crisis intervention, and supportive techniques to assist families during this time (6).
Because many families may have additional social risk factors, including language or cultural differences, poverty, chronic illness, or substance abuse, knowledge about the impact of these factors on coping with crises and parenting is needed. The importance of early intervention cannot be emphasized strongly enough, and interventions by neonatal nurses along with NICU social workers and neonatologists can have considerable positive effects for high-risk families during this time of disequilibrium.
Family-centered care is both a philosophy and approach to care that can enhance the potential of families to cope with the crisis and experience a positive outcome. Principles for family-centered neonatal care include open and honest communication in both medical and ethical considerations, providing in-depth medical information in terms that are meaningful, and accessibility to other parents who have had infants in similar circumstances. Information is provided to families early if neonatal problems are diagnosed prenatally. Parents are allowed to make decisions for their infants about aggressive treatments once they are fully informed with adequate medical knowledge. Additional areas addressed in family-centered care are alleviation of pain, ensuring an appropriate environment, providing safe and effective treatments, and policies and programs that promote parenting skills and maximum involvement of families with their infants in the NICU (7,8,9). Key elements of family-centered care are outlined in Table 7-1.
TABLE 7-1 THE KEY ELEMENTS OF FAMILY-CENTERED CARE | ||
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Parent and family education are necessary throughout the hospitalization in the NICU. Initially parents need information about their infant’s medical condition and what the prognosis is, as well as an introduction to the NICU personnel they encounter (“who does what”). Pamphlets and booklets about premature infants or specific disease conditions may be helpful. There are also several books written by parents or NICU professionals that contain detailed information, illustrations, and accounts of other parents’ reactions to the experience in the NICU (10,11). The Internet is another source of information for parents. Each unit should wisely evaluate which resources on the Internet contain the most up-to-date, factual, nonbiased information about specific conditions and post these resources for parents to access if they wish. Although written information is valuable, it is not a substitution for conferences and verbal interchange with parents. These conferences are focused on what the professional staff expects that the family needs to hear, what the parents are concerned about, and the parents’ feelings and reactions to what is happening to them and their infant. Nurses can help parents become involved in the physical care of their
infant by showing them the things they can do such as comfort measures, bathing, skin or mouth care, changing diapers, taking the temperature, holding as soon as their infant is stable on the ventilator or oxygen (Fig. 7-1), and providing breast milk.
infant by showing them the things they can do such as comfort measures, bathing, skin or mouth care, changing diapers, taking the temperature, holding as soon as their infant is stable on the ventilator or oxygen (Fig. 7-1), and providing breast milk.
Discharge teaching is an important aspect of family-centered care. This includes well-baby care with knowledge about specific patterns of feeding, sleeping, urination, stooling, breathing, skin care, and appropriate use of infant car seats. Teaching about medication administration, including the purpose, method of administration, side effects, and where to obtain the medications, is essential. Special needs are described and skills taught, including gavage or gastrostomy feeding, oxygen administration, ostomy care, tracheostomy care, cardiorespiratory monitoring, and others. Different disease processes or conditions are identified for parents, such as bronchopulmonary dysplasia, short-bowel syndrome, and hydrocephalus, and symptoms are identified for parents so they can assess and seek medical care appropriately after the infant is home (12,13).
QUALITY IN THE NEONATAL INTENSIVE CARE UNIT
The many disciplines and personnel described above provide the structure around the delivery of care in the NICU. However, to move beyond day-to-day care delivery and improve the quality of care, a sound knowledge base in quality improvement theory and practice is essential.
Background of Quality Improvement
Over the past decades, medicine has witnessed a rapid expansion of knowledge and technology. This expansion has occurred in parallel with financial pressures brought on by inexorable increases in per capita costs of health care and limitations in financial resources available to the health care system. These forces are especially applicable to intensive care subspecialties such as neonatology on which a significant amount of research and technology is focused and for which delivery of care can be extremely costly.
Research in the form of randomized controlled trials (RCTs) has become the “gold standard” for evaluating the efficacy of health care interventions. In 1966, about 100 articles were published annually in all fields of medicine from RCTs; by 1995, more than 10,000 were published (14). More than 3,000 articles about neonatology RCTs have been published alone (15).
In the face of this avalanche of information on clinical efficacy and rapid infusion of technology driven by the computer and pharmaceutical industries, health care workers and institutions have major challenges before them. Individuals in health care organizations need to efficiently evaluate new interventions and adopt the most compelling ones in a timely manner to provide optimal patient care and avoid preventable complications. It is through the principles of quality improvement, along with organizational adaptability, that continuous integration of research, technology, and improved patient care outcomes is accomplished.
Quality of care is defined by the Institute of Medicine as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge” (16). This definition, first proposed in 1990, has become widely accepted and is still considered the best definition of health care quality today. The concept of “health services for individuals and populations” is especially important in neonatology where evaluation is often determined by population data such as infant and neonatal mortality rates or the incidence of neurological deficits among a specific subgroup such as extremely low-birth-weight survivors.
The definition also emphasizes that quality care “increases the likelihood” of beneficial outcomes, a reminder that quality is not merely the achievement of positive outcomes. Poor outcomes occur despite excellent care because diseases vary in severity and can defeat even the best efforts. Conversely, patients may do well despite poor quality of care. Assessing quality thus requires attention to both processes and outcomes of care. The last part of the definition of quality, “consistent with current knowledge” highlights the dynamic and evolving body of knowledge available to health care professionals and the need to revise and update measures of quality as new interventions become standards of care.
Problems in quality of health care can be classified in three categories: underuse, overuse, and misuse (14). Underuse is the failure to provide a health care service when it would have produced a favorable outcome. For example, failure to provide surfactant in a timely manner after the delivery of an extremely low-birth-weight infant with respiratory distress syndrome would indicate underuse. Overuse occurs when a health care service is provided despite the fact that its potential for harm exceeds its possible benefit.
The widespread use of postnatal steroids for chronic lung disease popular in the 1990s is an example of overuse in neonatology. Misuse occurs when a preventable complication arises during administration of an appropriately selected treatment. Misuse includes many of the common medical errors that occur during hospitalization or other health care encounters. Medical errors have been extensively discussed (17,18), driving numerous initiatives by the United States (U.S.) government and regulatory agencies aimed at understanding the human and systems factors that contribute to the errors. External reporting systems that collect information on adverse events and errors are important in the reduction of future errors by alerting practitioners to new hazards, using the experience of individual hospitals using new methods to prevent errors, and revealing trends that require attention (19). In neonatology, medical errors have been collated and classified as part of an anonymous error-reporting project in conjunction with the NIC/Q Quality Improvement Collaborative of the Vermont Oxford Network (Table 7-2) (20).
The widespread use of postnatal steroids for chronic lung disease popular in the 1990s is an example of overuse in neonatology. Misuse occurs when a preventable complication arises during administration of an appropriately selected treatment. Misuse includes many of the common medical errors that occur during hospitalization or other health care encounters. Medical errors have been extensively discussed (17,18), driving numerous initiatives by the United States (U.S.) government and regulatory agencies aimed at understanding the human and systems factors that contribute to the errors. External reporting systems that collect information on adverse events and errors are important in the reduction of future errors by alerting practitioners to new hazards, using the experience of individual hospitals using new methods to prevent errors, and revealing trends that require attention (19). In neonatology, medical errors have been collated and classified as part of an anonymous error-reporting project in conjunction with the NIC/Q Quality Improvement Collaborative of the Vermont Oxford Network (Table 7-2) (20).
Regulatory agencies, in conjunction with federal and state governments, have traditionally been charged with the task of motivating health care professionals and organizations to maintain and improve quality. The Joint Commission on Accreditation of Healthcare Organizations, formed in 1951, initially developed standards for hospitals and evaluated compliance to these standards, hypothesizing that compliance with these standards would correlate with quality care and positive outcomes for patients in hospitals. In accreditation, quality is evaluated by monitoring adherence to accepted standards and measuring outcomes. Standards used by accreditation organizations are derived from a variety of sources, including government (via regulatory agencies at both the federal and state levels), as well as professional and community-based, standards of practice.
Regulation is for the most part successful in establishing minimal standards of performance and is an important means of protecting the public from egregiously poor providers. It has, however, numerous limitations. Standards are difficult to enforce uniformly, and regulation tends to be inflexible with difficulty in adapting quickly as knowledge changes. Regulation also fails to stimulate organizations to integrate new technologies or developments and does not motivate them to continuously improve. Continuous quality improvement (CQI) can supplement the deficiencies of regulation alone, while providing an impetus for individuals and organizations to strive for the highest quality of care.
TABLE 7-2 CLASSIFICATION OF MEDICAL ERRORS IN NEONATOLGY(20) | ||||||||||||||||||
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Continuous Quality Improvement
CQI emerges from the industrial sector as an effective system to reduce errors in production. It motivates good performers to excel, emphasizes identification of potentially successful change opportunities, and facilitates change implementation throughout all levels of the organization. CQI provides the framework for organizations to keep abreast of current knowledge and innovations, identify appropriate changes, and implement them in a timely manner. There are three components to CQI: measurement, benchmarking, and collaboration.
Measurement
The first and most basic element of CQI is the acquisition of data. Data acquisition drives information, which in turn drives action. Over the past 25 years, numerous systems of quality measurement have been developed, encompassing the areas of outcomes, processes, and patient satisfaction.
Outcome measures represent the most objective and often the most meaningful data for health care organizations. When applied to populations, outcome measures provide essential feedback to leaders charged with resource allocation, managers charged with developing successful and efficient organizations, and individual health care providers.
Due to variability in disease severity among patients from different socioeconomic and cultural backgrounds, as well as differences in the type of patients cared for in highly specialized tertiary centers compared to community health facilities, data based on outcomes alone can be inaccurate or misleading. Process measures are also important in evaluating overall quality. Measures of process are needed to determine that accepted standards of care are being met regardless of good or bad outcomes.