When a baby is born extremely premature or presents with

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1 Neonatal Ethical Issues: Viability, Advance Directives, Family Centered Care Tanya Sudia-Robinson, PhD, RN Abstract Ethical issues in perinatal and NICU settings can arise from a variety of situations. This article focuses on issues surrounding viability and the incorporation of advance directives and familycentered care. Prenatal education about infant viability, probable scenarios, and parental involvement in decision-making are addressed. Considerations for advance directives for complex births and critical decisions at the time of birth are also discussed. Implications for nurses and suggested dialogue strategies are provided. Key Words: Advance directives; Neonatal ethical issues; Parental decision-making; Viability. When a baby is born extremely premature or presents with a significant physiologic complication, ethical issues can arise. Neonatal ethical issues are unique in that the infant s progression from birth to death may occur in a very short time frame. Some infants live for only a few minutes, hours, or days, giving parents and healthcare providers a very short time frame in which to make critical decisions. Among the ethical issues confronting neonatal nurses are questions surrounding viability, implications for care, and parental involvement in decision-making. This article addresses these issues and provides direction for nursing practice. Prenatal Education on Viability for Extremely Premature Infants Presenting all pregnant women with information about fetal development and the possibility of preterm birth provides a foundation for understanding the complexity of early preterm birth. As preterm birth is a very stressful event, early education and decision-making can prepare parents to more fully engage in participatory decision-making for their infant (Armigo, 2008). The parameters for infant viability and resultant outcomes changed dramatically with the advent of advanced technology. Along with technological advances in respiratory care came a clearer understanding of the role of surfactant and the fetal lung maturation process. Pushing past previously perceived limits of gestational age and birthweight viability lead to controversial discussions exploring ethically based questions such as How small is too small? and How young is too young? In addition to advances in respiratory and pharmacologic therapy, neonatal care has focused on measures to enhance the neonate s quality of life. Increased attention to the incorporation of developmentally supportive and family-centered care in the NICU has also led to improved care for both neonates and their families. However, despite all of these advances and supportive measures, limits remain for those infants at the margins of gestational age and birthweight viability. Available data on infant birthweight, gestational age, and survival rates indicate that infants less than 23 weeks gestation and weighing less than 500 grams are unlikely to survive (Seri & Evans, 2008). Recent surveys of practicing neonatologists indicate that aggressive resuscitation is generally 180 volume 36 number 3 May/June 2011

2 not attempted for infants born at gestational ages of less than 23 weeks (Partridge, Sendowski, Drey, & Martinez, 2009). It is imperative that accurate assessment of neonates near the limit of viability takes place in the birthing room, preferably by a neonatologist (Seri & Evans). Decision-making about aggressive resuscitation and resultant interventions should be made based on a variety of variables, including the clinical presentation of the infant and in conjunction with the parents preferences (Fanaroff, 2008; Janvier, Barrington, Aziz, & Lantos, 2008). Treatment decisions should be made in the best interest of the infant, with respect accorded to parental prerogatives (Penticuff, 1995; Sudia-Robinson, 2010a, 2010b; Teasdale, 2007). Decision-making for the initiation of and continuation of care for extremely premature infants born on the margin of viability should also be predicated on the principle of informed consent. Parents need information about the benefits as well as potential burdens of aggressive therapy so that they can make in- May/June 2011 formed decisions about what they think is in the best interest of their infant (Williams & Sudia-Robinson, 2007). Providing parents with information in an easily understood manner is the key to engagement in the decisionmaking process. Parents should be presented with information regarding likely scenarios for specific birthweight and gestational age ranges (Armigo, 2008). Including data on potential complications is critical if parents are to have a realistic vision of long-term-care needs (Schroeder, 2008). Parents should be given time to fully explore their questions and concerns. For some parents, cultural beliefs and religious beliefs and practices will be the strongest determinate in their decisionmaking process. One concern that has been expressed by some parents is that if they chose a less aggressive route of care, they will be participating in the death of their child. Exploring the perspective of allowing death to occur versus overtly causing it is often helpful. Involving clergy and other religious support persons in early discussions can also be helpful as parents consider their options. MCN 181

3 Implications of Prenatal Education on Viability for Nursing Clinical Practice 1. Repeat critical information more than once to ensure understanding: As Dr. Smith said, your baby is very premature. He will not be able to breathe on his own. He will need the help of a breathing machine the ventilator. He will also have IVs and monitors. Seeing all of this equipment around a tiny baby can be overwhelming 2. Follow up with what they can expect in the next few hours or days: You will not be able to hold your baby right away. However, you can touch him and talk to him. The first few hours and days are a very critical time period. There will be lots of equipment attached to your baby. It is normal for parents to have lots of questions. Sometimes nurses and doctors use terms that are unfamiliar. Please ask them to explain anything you do not understand 3. Focus on the decision-making process: The doctors will give you information about your baby s condition. Sometimes they will give you choices and ask what you want to do. Ask as many questions as you need to. As parents, you have a legal right to make decisions about your baby s care. If there is a procedure you don t want your baby to have, ask the doctors and nurses about it. Also, if there is something more that you want done for your baby, ask the doctors and nurses if that is possible 4. Explain that they can seek out others to help with decision-making: We have given you a lot of new information. This is a difficult time for parents. You might want to talk this over with family members or close friends. Also, there are other people in this hospital that can help you. You can ask to talk to the chaplain, social worker, or other staff 5. Help them feel comfortable asking difficult questions: Sometimes when things are not going well and the baby is getting sicker, parents can wonder if they are harming their baby more than helping him. It is okay to ask about this. Tell us if you think your baby is suffering too much. We will do everything we can to make him comfortable. But, sometimes there are difficult decisions to make. Ask questions and tell us what you are thinking. Ask us what choices can be made Advance Directives for Complex Births Complex births encompass varying scenarios including the presence of three of more fetuses as well as the diagnosis of fetal complications. Multiple births represent increased risk for both the mother and fetus (Bainbridge, 2007; Luke & Brown, 2008; Moore, 2007; Sunderam et al., 2009), and can require corresponding special birth considerations. Such considerations are also necessary with the presence of certain neurologic and gastrointestinal complications such as severe hydrocephalus, omphalocele, and gastroschisis in order to maximize the infant s prognosis (Blackburn & Ditzenberger, 2007; Thigpen, 2007). The 1990 Patient Determination Act (42 U.S.C. Section 1396a) legalized the use of advance directives, and issues have been raised since regarding the importance of advance directives in perinatal and neonatal practice (Leger, 2009). Perinatal advance directives are helpful in providing an opportunity for discussion about options prior to their occurrence. Catlin (2005) has called for further development and utilization of a prenatal advance directive as a means of assisting mothers in making critical decisions about the use of aggressive therapy prior to birth. This preliminary dialogue gives parents the opportunity, perhaps for the first time, to consider their perspectives on the potential use of aggressive medical treatment for their infant, should conditions warrant such consideration. Despite there being many unknown factors prior to the infant s birth, this time for reflection in a time of noncrisis assists parents with informed decision-making. It also provides an opportunity for parents to learn about prematurity and other reasons that intensive therapy might be medically warranted for their infant. Researchers have found that advance planning by parents for their children can reassure them that their children will receive the best possible care while avoiding undue suffering (Hammes, Klevan, Kempf, & Williams, 2005). It may be helpful for parents to view the advance directive birth plan as a dynamic rather than a static document. Thus, as the pregnancy progresses and more is known about the maturity of the fetus and presence or absence of congenital concerns, the birth plan can be modified accordingly. These revisions would include positive changes and the affirmation of milestone achievement. For example, if the advance directive includes provisions regarding the treatment of an extremely premature infant and the pregnancy has now progressed to 32 weeks gestation, the parents can celebrate the alleviation of that concern. Similarly, should an untoward neonatal situation present, such as the diagnosis of a severe congenital heart defect, the advance directive can be modified to incorporate the expected presence of a neonatal team in the birthing room. Alternately, the plan might be modified such that the birth takes place at a medical center other than originally planned in order to ensure that highly specialized neonatal care is readily available. Regardless of whether the parents develop an advance directive or otherwise make their desires known, it is imperative that they understand that not everything is predictable and that modifications may be necessary to preserve the well-being of the mother and infant(s). Further, general limitations to honoring birth plans and/or advance directive need to be made explicit in advance. This is particularly important with complex multiple births and when unanticipated complications arise. Situations may arise such that expert clinical decision-making that is in the best 182 volume 36 number 3 May/June 2011

4 interest of the mother and/or infant will necessitate overriding parental preferred birth plan or advance directive. Providing parents with realistic expectations regarding the likely course of events as well as informing them of potential limitations to their decision-making in advance will assist in building trust with the neonatal specialty care team. Implications of Advance Directives for Nursing Clinical Practice 1. For parents who do not have a perinatal advance directive, explain what it is. If there is time to do so, explain the process and ask whether they would like to develop one. Proceed with assistance as available at your hospital 2. For parents that have a perinatal advance directive, review it with them. Ask whether there is any aspect that they have questions about 3. Emphasize that while the nurses and doctors will follow their wishes to the extent possible, circumstances may arrive in which different action needs to be taken. Based on the specifics of their advance directive and the clinical presentation of the mother and baby at that time, provide an example to illustrate exceptions. For example, if the mother presents with placenta previa, explain what emergency procedures might need to take place to save her life and the life of her baby. Also, if the baby is more mature (by gestational age) and of a greater birthweight than anticipated, aggressive therapy may need to be instituted rather than nonintervention 4. Reemphasize that their stated directive will be honored to the extent possible 5. Provide another opportunity for them to ask questions Decisions at the Time of Birth Critical decisions may need to be made at the time of birth for a variety of unanticipated factors including marked changes in the infant s physiologic status, earlier than predicted gestational age, extremely low birthweight, and the presence of life-threatening anomalies. Any such unexpected variant in the birth process presents a stressful situation for the parents. In addition to providing urgent care for the mother and her infant, nurses need to be acutely aware of the anxiety and fear the parents are experiencing. Providing accurate and succinct information can aid in establishing trust (Eden & Callister, 2010) and decreasing parental anxiety. Some parents will have had an opportunity to formulate an advance directive during the prenatal period. Their advance directive may or may not include the exact situation that presents at the time of birth but can nonetheless serve as a starting point for dialogue in the midst of crisis. Expressed parental wishes can be carried out to the extent they abide with current practice recommenda- tions and fall within respective legal parameters. When a situation arises for which the parents have not yet made their preferences known, special consideration should be given to adequately inform them and elicit their input. When critical decisions need to be made at the time of birth, parents are thrust into an unfamiliar and stressful situation. Focusing on the well-being of the mother and infant are the paramount concern of the healthcare team. Keeping parents informed of clinical decisions as they evolve is also an important role for healthcare team members. Throughout this process, parents should be included to the extent possible and desirable in decisionmaking for their infant. The decisions that are made and the resultant outcomes are ones that the parents will live with forever. Providing support and facilitating collaboration can help ease the stress of the crisis situation and fosters the development of a family-centered care relationship (McGrath, 2007). Implications of Decision Making at the Time of Birth for Nursing Clinical Practice 1. If parents had an advance directive that cannot be followed due to a change in the mother or baby s condition, explain the changes as succinctly as possible 2. Remember that when a preplanned birthing situation changes, parents can experience significant stress and anxiety. Speak in a calm manner and use short sentences. Reassure the parents that the doctors and nurses are doing what is best for the immediate needs of the mother and/or her baby 3. To the extent possible, facilitate parental feelings of control by allowing them the opportunity to make choices as decision points arise. Keep talking to them in a reassuring manner. Ascertain their understanding of the changing situation and explain procedures as necessary Developmental and Family-Centered Care The family-centered care model respects and empowers the family unit with attention to cultural practices and preferences (Institute for Family-Centered Care, 2002; McGrath, 2007). Studies of developmentally supportive care demonstrated benefits such as improved neurodevelopmental outcomes, earlier progression to oral feeding, and earlier discharge (Als et al., 1986, 2003). More recent research findings indicate that preterm infants provided with developmentally appropriate family-centered care benefit by experiencing response behaviors, including less irritability and agitation (Byers et al., 2006). Developmentally appropriate family-centered care incorporates attention to the infant s unique physiologic and neurodevelopmental needs while also focusing on the family. Measures such as skin-to-skin holding or kangaroo care have been shown to improve infant outcomes (Carrier, May/June 2011 MCN 183

5 2010; Ferber & Makhoul, 2008; Kashaninia, Sajedi, Rahgozar, & Noghabi, 2007). Similarly, kangaroo care can also be beneficial for parents (Kassity-Krich & Jones, 2007), as it allows further opportunity for bonding with the infant. Further, the opportunity to engage in normal parenting activities, such as holding their newborn, can help parents transition to their new role. Other components of developmentally appropriate neonatal care include aromatherapy, music therapy, light therapy, and infant massage (Kassity-Krich & Jones; Sudia-Robinson, 2010b). Within a family-centered framework, a concerted effort to engage parents in the decision-making process is essential. Too often, one-way communication takes place with parents rather than true dialogue (Sudia-Robinson & Freeman, 2000). One-way communication is characterized by imparting information such as stating facts. In the NICU, an example of one-way communication is Your baby s vital signs are stable and the ventilator settings remain the same. If he takes a turn for the worse, we ll place him on a different type of ventilator and perform additional tests. Whereas an invitation to dialogue would be: Jonathan s overall condition is stable. How does he look to you this morning? The NICU is new environment for you and there are many things that you have probably never seen before. Most parents have lots of questions but are hesitant to ask them. You can ask the nurses and doctors here questions any time. Let s start with your questions. Similar statements that offer an invitation to dialogue include: Tell me about your concerns: and, We want you to be as involved as you want to be in both his care and the decision-making surrounding his care. Providing parents with frequent opportunities to state their preferences and engage in decision-making is an important component of family-centered care (Kenner, 2010; McGrath, 2007; Sudia-Robinson, 2010a). Implications of Using Developmental and Family Centered Care in the NICU for Nursing Clinical Practice 1. Explore the parents desires to hold and touch their infant along with their concerns. As extremely premature infants can look very fragile, it is helpful to start parental conversations acknowledging this. For example, I know that your baby looks so tiny and fragile, but it is okay to touch him. When you first touch him, do it gently like this. The nurses will help you hold your baby and will stay close by until you feel comfortable 2. Discuss the benefits of measures such as kangaroo care with parents, Many babies become calmer and rest better when they are able to rest on their parents chest. This type of snuggling is called kangaroo care 3. Incorporate discussion of when babies need diminished stimulation. For example, Sometimes babies can become over-stimulated and touching or holding them needs to wait. We will help you monitor your baby for signs that he needs a different type of rest without any stimulation 4. Ascertain parental preferences and incorporate them to the extent possible. Engage parents in discussion about preferences by dialogue such as, Some babies respond well to soft music. We have recordings that we can play for your baby. Or, if you prefer, you could record yourself singing in a soothing voice or playing an instrument quietly for your baby. What ideas do you have about this? 5. Conduct a similar assessment of parental preferences for other aspects of care. To the extent feasible and nondisruptive to the setting or others, allow parents to be creative and to express their preferences as they would in their own home Ethical issues are inherent in perinatal and NICU settings. It is essential for nurses to be at the forefront of recognizing and working collaboratively with parents and members of the healthcare team to address these issues. Prebirth discussions and invitational conversation can help parents become engaged in important decisionmaking about their neonate. Tanya Sudia-Robinson is a Professor at Georgia Baptist College of Nursing of Mercer University where she teaches ethics and research courses in the doctoral program. She can be reached via at Robinson_ts@mercer.edu DOI: /NMC.0b013e References Als, H., Gilkerson, L., Duffy, F. H., McAnulty, G. B., Buehler, D. M., & Vandenberg, K. (2003). A three-center, randomized controlled trial of individualized developmental care for VLBW preterm infants. Journal of Developmental and Behavioral Pediatrics, 24, doi: / Als, H., Lawhorn, G., Brown, E., Gibes, R., Duffy, F. H., & McAnulty, G. B. (1986). 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6 Fanaroff, A. A. (2008). Extremely low birthweight infants: The interplay between outcomes and ethics. Acta Paediatrcia, 97(2), doi: /j x Ferber, S. G., & Makhoul, I. R. (2008). Neuro-behavioural assessment of skin-to-skin effects on reaction to pain in preterm infants: A randomized controlled within-subject trial. Acta Paediatrica, 97(2), doi: /j x Hammes, B. J., Klevan, J., Kempf, M., & Williams, M. S. (2005). Pediatric advance care planning. Journal of Palliative Medicine, 8(4), doi: /jpm Institute for Family-Centered Care. (2002). Advances: Changing the concept of families as visitors in the hospital. Bethesda, MD: Institute for Family-Centered Care. Janvier, A., Barrington, K. J., Aziz, K., & Lantos, J. (2008). Ethics ain t easy: Do we need simple rules for complicated ethical decisions? Acta Paediatrcia, 97(4), doi: /j x Kashaninia, Z., Sajedi, F., Rahgozar, M., & Noghabi, F. A. (2008). 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Journal of Perinatology, 28(Suppl. 1), S4-S8. Sudia-Robinson, T. (2010a). Ethical issues. In M. T. Verklan & M. Walden (Eds.). Core curriculum for neonatal intensive care nursing (4th ed, pp ). St. Louis: Saunders Elsevier. Sudia-Robinson, T. (2010b). Palliative care. In C. Kenner & J. M. Mc- Grath (Eds.). Developmental care of newborns and infants: A guide for healthcare professionals (2nd ed). St. Louis: Mosby Elsevier. Sudia-Robinson, T. M., & Freeman, S. B. (2000). Communication patterns and decision-making among parents and health care providers in the neonatal intensive care unit: A case study. Heart and Lung, 29(2), doi: /s (00) Sunderam, S., Chang, J., Flowers, L., Kulkarni, A., Sentelle, G., Jeng, G., Macaluso, M. (2009). Assisted reproductive surveillance-united States, Morbidity and Mortality Weekly Report, 58(5),1-25. Teasdale, D. (2007). Ethical decisions in fetal medicine and neonatal intensive care. Paediatric Nursing, 19(1), Thigpen, J. (2007). Gastrointestinal system. In C. Kenner & J. W. Lott (Eds.). Comprehensive neonatal care: An interdisciplinary approach (4th ed., pp ). St. Louis: Saunders Elsevier. Williams, P. H. & Sudia-Robinson, T. (2007). Legal and ethical issues of neonatal care. In C. Kenner & J. W. Lott (Eds.). Comprehensive neonatal care: An interdisciplinary approach (6th ed., pp ). St. Louis: Saunders Elsevier. For 18 additional continuing nursing education articles on ethical/legal issues, go to nursingcenter.com/ce. March of Dimes Foundation Honors Dr. Margaret Freda With great pleasure I announce that Margaret Comerford Freda, EdD, RN, CHES, FAAN, Editor, MCN The American Journal of Maternal/ Child Nursing has been honored by the March of Dimes Foundation. In appreciation of her services, the Foundation s nursing research award has been renamed the March of Dimes Dr. Margaret Comerford Freda Saving Babies, Together Award. The March of Dimes recognized Dr. Freda for her years of volunteer service and for the key role she played in the development and implementation of the Foundation s nursing program. Everyone who knows Dr. Freda is aware of her strong commitment to nursing research and practice, and her drive for excellence in patient care. As the Editor of MCN, her expertise and influence is far-reaching, providing the most timely, relevant information to nurses practicing in perinatal, neonatal, midwifery and pediatric specialties. Lippincott Williams and Wilkins is proud of Dr. Freda s accomplishments. On behalf of LWW, I am honored to congratulate her on this honor, and offer our profound thanks for her contributions to the LWW nursing program. Sandra Kasko, Publisher, MCN May/June 2011 MCN 185