NEONATAL INTENSIVE CARE GUIDELINES
Category: Child Health
Abstract : NEONATAL INTENSIVE CARE GUIDELINES Overview NICU guidelines are developed to relate professional medical consensus. Institutional, regional, or societal goals can establish norms and provide a reference point to assist healthcare professionals and parents as they make decisions. Clinical practice guidelines have gained broad acceptance by healthcare managers and many clinicians over recent year
NEONATAL INTENSIVE CARE GUIDELINES
Overview NICU guidelines are developed to relate professional medical consensus. Institutional, regional, or societal goals can establish norms and provide a reference point to assist healthcare professionals and parents as they make decisions. Clinical practice guidelines have gained broad acceptance by healthcare managers and many clinicians over recent years.
Existing Guidelines : Medical futility or futile care : Several US regions are developing clinical ethics guidelines to address this issue, including Houston, Texas; Charleston, South Carolina; Denver, Colorado; Sacramento, California; and the state of Georgia.
Do not resuscitate orders Guidelines for the use of do not resuscitate (DNR) orders developed and promulgated by professional societies and ethicists have assisted in the day-to-day management of numerous difficult issues, including determining brain death and the withdrawal or withholding of life-sustaining therapy.
Other guidelines of ethical import
• Report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1983
• "Guidelines on the termination of life-sustaining treatment and the care of the dying." The Hastings Center, 1987
• American Academy of Pediatrics (AAP) and American College of Obstetricians and Gynecologists (ACOG) Guidelines for Perinatal Care, now in its fourth edition
• Canadian Pediatric Society and Society of Obstetricians and Gynecologists of Canada statement "Management of the woman with threatened birth of extremely low gestational age." 1994
• AAP Committee on Fetus and Newborn and ACOG Committee on Obstetric statement entitled "Perinatal care at the threshold of viability." 1995
• AAP Committee on Bioethics statement "Ethics and the care of critically ill infants and children." 1996
When applying these technologies, consider guidelines such as Dr John Tyson and colleagues' 1996 evaluation of criteria for considering risk-benefit ratios in providing intensive care interventions (eg, mechanical ventilation to extremely low birth weight infants).
Institution-specific guidelines, such as those developed at the Medical College of Georgia for hospice care of newborns with life-limiting conditions, also have a place in clinical practice. The process of their development may prove beneficial to staffs and families and may serve newborn patient interests.
Communication process : In the attempt to derive guidelines at any level, give attention to the processes of communication and decision making. This process may be more important than the actual product, the specific guideline itself. If both professional and community consensus building can work toward deriving guidelines that address the needs of the community, then such work is beneficial.
Often, the initial communication is the most difficult. Even if the parents know what their wishes are and can communicate them, the timing of premature deliveries unfortunately may not afford the luxury of ascertaining parental wishes prior to birth. The aim of guidelines should not be to dictate medical care but to facilitate decision making and perhaps give consistency to the process in which difficult decision making takes place. An end result may be that families are empowered in decision making; however, certainly all parties involved in these decisions for critically ill newborns should benefit from enhanced communication and clearly defined goals.
Using a cautious approach : Three reasons to consider a more cautious approach to the use of neonatal intensive care than simply providing it to every patient at all times are as follows:
• Guidelines for the appropriate application of neonatal intensive care may help healthcare professionals as they consider the possibility that the provision of every imaginable resource to the smallest, most ill, and most vulnerable infants may compromise the outcomes of other patients (eg, larger infants who have better prognoses).
• Allocating scarce resources to provide for the needs of all babies is difficult; often, the very low birth weight infants garner all of the attention, perhaps to the detriment of larger babies. Clearly, what is used for one patient is unavailable to others.
• Given the limited availability of follow-up data, the generally poor tracking of patients after discharge, and the failure of many practitioners to listen to parents' wishes and concerns, unrestrained interventions actually may provide patients or their families a disservice.
Positive Aspects
Expertise : Guidelines reflect thoughtful consideration by experts. While they do not necessarily provide the absolute answer, they provide a possible answer and, generally, more than just a starting point. Knowing that a group of concerned professionals have addressed a problem, considered multiple perspectives, and examined options and outcomes to the best of their abilities is reassuring. When confronted with weighty problems, it helps to not feel alone and to be able to rely on the experience and expertise of others.
Enabling :Guidelines enable professionals who previously have been constrained by lack of policy or clear direction regarding certain problems. If a hospital has never addressed withholding certain life-sustaining care, making such decisions or seeing them implemented may become difficult. If a new technology is offered without guidelines for indicated or appropriate use, be it clinical or research, using that technology reliably or responsibly may prove difficult. Guidelines in such cases enable staffs and institutions to make responsible decisions with their patients' best interests at heart.
Empowering : Guidelines empower the team of healthcare professionals and parents involved in a particular case. Guidelines typically identify responsible decision makers and provide a voice to those whose perspectives should be considered.
Encouraging : The process of deriving guidelines encourages teamwork, communication, and confronting (rather than avoiding) issues. When facing difficult issues, many staff members need encouragement. Professional staff members feel a sense of accomplishment upon the completion of a guideline, and they are encouraged to face a new or different problem needing similar attention in the future.
Education : Guidelines, and the process by which they are developed, are educational for all involved and provide a format for educating the staff and community. Contributing to the process of developing a guideline, at the institutional, community, or professional society level, is an educational experience. Once derived, communicating these guidelines to the community of interested persons (patients, staffs, professionals, the public) involves ongoing education. The disclosure or dissemination of guidelines may provide a springboard for additional educational endeavors.
Negative Aspects : Potential negative aspects of guidelines in healthcare decision making exist. The most obvious of these is the fact that guidelines are, of necessity, incomplete. Not all healthcare cases fall under the general guideline parameters. Some cases test the system or do not represent the norm; hence, consistency may not result in every case, even with the best-intended guidelines. Guidelines are recognized as imperfect because they are imperfect. However, as previously stated, guidelines represent more than a simple starting place and reflect considerable expertise and judgment. The exceptional case does not negate the value of the guideline any more than the guideline reflects simple anecdotal experience. The value lies in the broader applicability of the guideline to most cases.
In view of these potential shortcomings, guidelines do not please everyone. Some practitioners see them as an intrusion into what they believe to be private decision making, others view them as medicine by committee, and still others view guidelines as unwarranted bureaucratic oversight.
In some situations, tragic situations leave only tragic options. Guidelines cannot resolve the hurt associated with the emotional investment made toward patient care when outcomes are dismal. Following a guideline does not necessarily make a dismal outcome easier to bear.
Responsibilities
Basis on fact: Guidelines need to be based on fact. The use of data is fundamental to the credibility of guidelines. Such data should be more than anecdotal and ideally should reflect local institutional or regional experience rather than national data, which may represent a significantly dissimilar population that undergoes vastly different experiences over remote points of time. Data should be current, complete, and comprehensive.
Currency of guidelines: Guidelines should be kept current. When conditions in place at the time a guideline was developed change (eg, local population; availability of healthcare technology; social, political, or fiscal influences), evaluate the guidelines and, if necessary, change them to reflect the new paradigm.
Responsibility for public disclosure: Responsibility for public disclosure exists within any institution that develops or uses guidelines. Patients who are subject to care under certain guidelines have a right to know how they are affected by them, and healthcare professionals have a duty to inform patients of these guidelines. This responsibility stems from the principles of respect for persons, patient autonomy, avoidance of harm, and maximizing benefit. This is the nature of fiduciary, or trust-based, relationships between healthcare professionals and their patients. Only in this way can such professionals truly be advocates for their patients. Advocacy begins with staff involvement in the development of guidelines, but it realizes itself in the conveying of information to patients and families to facilitate their understanding of why care proceeds along certain lines and how they can contribute to it.
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