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Prenatal Genetic Diagnosis and Birth Planning: Implications for the Neonatal Intensive Care Unit
FAMILY DYNAMICS
Prenatal Genetic Diagnosis and Birth Planning: Implications for the Neonatal Intensive Care Unit Jacqueline M. McGrath, PhD, RN, NNP, FNAP, FAAN Associate Professor & Column Editor
Diagnostic and genetic screening coupled with technology provides us with the means to predict which child will need intensive care therapies before birth. Yet, the birth of an infant with prenatal diagnosis of genetic disorders is fraught with a high degree of uncertainty for the family. The “normal” child the family was expecting is not coming, and a child who has special needs or who may not live long is about to enter the picture. The genetic diagnosis may indicate the need for immediate medical intervention, surgery, or worse, preparation for the child's untimely departure. The family must grieve and simultaneously begin to prepare for this new situation. And thus, this is often a very difficult time for the family. However, there has been a prenatal diagnosis that allows for better planning of the birth and admission to the neonatal intensive care unit (NICU). Discussion before birth provides the opportunity to clarify and thoughtfully consider choices outside the intensity of the birth and admission event.1 This can be accomplished through the development of a written birth plan that can then be communicated to all members of the caregiving team. We are not suggesting birth planning in the traditional sense but rather a plan for how the family would like their infant to be managed in the high-risk environment. This vehicle of communication may be particularly important if the infant is diagnosed with a disorder that is complex requiring multiple therapies or is incompatible with life.1-4 Birth plans are commonly instituted by midwifery practices or obstetrical settings when the outcomes are predicted to be in the normal range. The goal of the birth plan is to increase the families' sense of control, involvement in decision making, as well as educating the family about the choices they will need to make.2–4 Birth plans are becoming more common in the NICU environment. The neonatology consultation often begins this type of planning but ordinarily does not include facilitating the family to write a plan that meets both their needs as well as the needs of their infant. From the School of Nursing, Virginia Commonwealth University, Richmond, VA. Address correspondence to Jacqueline M. McGrath, PhD, RN, NNP, FNAP, FAAN, School of Nursing, Virginia Commonwealth University, PO Box 980567, Richmond, VA 23098-0567. E-mail: [email protected]. © 2008 Elsevier Inc. All rights reserved. 1527-3369/08/0801-0230$10.00/0 doi:10.1053/j.nainr.2007.12.003
Although it is common knowledge that parents ultimately do not dictate the birth event as it is the infant who is on center stage, parents can be better prepared for the choices they will need to make during the birth—an admission process. Birth plans have been compared to living wills because they are advanced directives that provide tools for preparedness during an event that has the potential for conflict.1 Given the emotional nature of birth and the additive effect of a child with a genetic disorder, it would seem birth planning is an ideal tool for facilitating family involvement and support. Designing a birth plan for these infants allows families to examine their values, and identify the special needs of the infant, as well as consider their own needs for involvement in decision making and caregiving.4-6 In addition, the preparation of such a plan requires the family to become more knowledgeable about the infants' disorder and prognosis. They are also able to address potentially conflicting situations before they arise. Birth plans can be considered an active response to a difficult situation that provides parents with an increased sense of control. For this reason, birth plans in the NICU can feel uncomfortable to some professionals. How can families know or dictate the needs of the infant who requires the resources of the NICU? Informed consent requires us to make sure families understand the needs of the infant and yet, they do have a choice. Satisfaction with the birth experience is often linked to a sense of control about how the experience occurred or how it turned out.7,8 For example, were the expectations of the family met or not. Caregiver attention to the families' needs can be a critical factor to the level of satisfaction perceived by the family. Attention can be conveyed through listening and providing active decision making throughout the process. It does not always include agreeing with every request the family makes. Although we need to honor the requests of families, there may be times when professionals cannot honor these requests because of personal, morale, or professional constraints. Whenever possible, parents need to know about the possibilities of this occurring before the situation arises. Lastly, these plans are important and should be considered for inclusion in the permanent medical record. Birth plans when the delivery is known to be high risk need to consider several issues. Where shall the child be born? What technology and resources will be needed and when? Who (professionals and family members) needs to be present and involved at the birth? If a higher level of care is required, then is
locally available, is maternal transpert before delivery feasible? What about the holistic and cultural needs of the family? What will the level of family decision making be during the birth and admission process? Will the care of the family respect their need for privacy, dignity, and confidentiality? Considering these issues with the family can make the birth experience more positive for both the infant and the family affecting both short-term and long-term outcomes.
References 1. Philipsen NC, Haynes DR. The similarities between birth plans and living wills. J Perinatal Ed. 2005;14:46-48. 2. Lothian J. Birth plans: the good, the bad, and the future. J Obstet Gynecol Neonatal Nurs. 2006;35:295-303.
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NEWBORN
3. Lundgren I, Berg M, Lindmark G. Is the childbirth experience improved by birth plans? J Midwifery Women's Health. 2003;48:322-328. 4. Lothian JA. The birth plan revisited. J Perinatal Ed. 2000;9: viii-xi. 5. Perez PG. Birth plans: are they really necessary? Pro position. MCN: Am J Matern Child Nurs. 2005;30:288. 6. Lepsch S. Birth plans: are they really necessary? Con position. MCN: Am J Matern Child Nurs. 2005;30:289. 7. Deering SH, Heller J, McGaha K, Heaton J, Satin AJ. Patients presenting with birth plans in a military tertiary care hospital: a descriptive study of plans and outcomes. Mil Med. 2006;171:778-780. 8. Whitford HM, Hillian EM. Women's perceptions of birth plans. Midwifery. 1998;14:248-253.
& INFANT NURSING REVIEWS
Prenatal Genetic Diagnosis and Birth Planning: Implications for the Neonatal Intensive Care Unit Jacqueline M. McGrath, PhD, RN, NNP, FNAP, FAAN Associate Professor & Column Editor
Diagnostic and genetic screening coupled with technology provides us with the means to predict which child will need intensive care therapies before birth. Yet, the birth of an infant with prenatal diagnosis of genetic disorders is fraught with a high degree of uncertainty for the family. The “normal” child the family was expecting is not coming, and a child who has special needs or who may not live long is about to enter the picture. The genetic diagnosis may indicate the need for immediate medical intervention, surgery, or worse, preparation for the child's untimely departure. The family must grieve and simultaneously begin to prepare for this new situation. And thus, this is often a very difficult time for the family. However, there has been a prenatal diagnosis that allows for better planning of the birth and admission to the neonatal intensive care unit (NICU). Discussion before birth provides the opportunity to clarify and thoughtfully consider choices outside the intensity of the birth and admission event.1 This can be accomplished through the development of a written birth plan that can then be communicated to all members of the caregiving team. We are not suggesting birth planning in the traditional sense but rather a plan for how the family would like their infant to be managed in the high-risk environment. This vehicle of communication may be particularly important if the infant is diagnosed with a disorder that is complex requiring multiple therapies or is incompatible with life.1-4 Birth plans are commonly instituted by midwifery practices or obstetrical settings when the outcomes are predicted to be in the normal range. The goal of the birth plan is to increase the families' sense of control, involvement in decision making, as well as educating the family about the choices they will need to make.2–4 Birth plans are becoming more common in the NICU environment. The neonatology consultation often begins this type of planning but ordinarily does not include facilitating the family to write a plan that meets both their needs as well as the needs of their infant. From the School of Nursing, Virginia Commonwealth University, Richmond, VA. Address correspondence to Jacqueline M. McGrath, PhD, RN, NNP, FNAP, FAAN, School of Nursing, Virginia Commonwealth University, PO Box 980567, Richmond, VA 23098-0567. E-mail: [email protected]. © 2008 Elsevier Inc. All rights reserved. 1527-3369/08/0801-0230$10.00/0 doi:10.1053/j.nainr.2007.12.003
Although it is common knowledge that parents ultimately do not dictate the birth event as it is the infant who is on center stage, parents can be better prepared for the choices they will need to make during the birth—an admission process. Birth plans have been compared to living wills because they are advanced directives that provide tools for preparedness during an event that has the potential for conflict.1 Given the emotional nature of birth and the additive effect of a child with a genetic disorder, it would seem birth planning is an ideal tool for facilitating family involvement and support. Designing a birth plan for these infants allows families to examine their values, and identify the special needs of the infant, as well as consider their own needs for involvement in decision making and caregiving.4-6 In addition, the preparation of such a plan requires the family to become more knowledgeable about the infants' disorder and prognosis. They are also able to address potentially conflicting situations before they arise. Birth plans can be considered an active response to a difficult situation that provides parents with an increased sense of control. For this reason, birth plans in the NICU can feel uncomfortable to some professionals. How can families know or dictate the needs of the infant who requires the resources of the NICU? Informed consent requires us to make sure families understand the needs of the infant and yet, they do have a choice. Satisfaction with the birth experience is often linked to a sense of control about how the experience occurred or how it turned out.7,8 For example, were the expectations of the family met or not. Caregiver attention to the families' needs can be a critical factor to the level of satisfaction perceived by the family. Attention can be conveyed through listening and providing active decision making throughout the process. It does not always include agreeing with every request the family makes. Although we need to honor the requests of families, there may be times when professionals cannot honor these requests because of personal, morale, or professional constraints. Whenever possible, parents need to know about the possibilities of this occurring before the situation arises. Lastly, these plans are important and should be considered for inclusion in the permanent medical record. Birth plans when the delivery is known to be high risk need to consider several issues. Where shall the child be born? What technology and resources will be needed and when? Who (professionals and family members) needs to be present and involved at the birth? If a higher level of care is required, then is
locally available, is maternal transpert before delivery feasible? What about the holistic and cultural needs of the family? What will the level of family decision making be during the birth and admission process? Will the care of the family respect their need for privacy, dignity, and confidentiality? Considering these issues with the family can make the birth experience more positive for both the infant and the family affecting both short-term and long-term outcomes.
References 1. Philipsen NC, Haynes DR. The similarities between birth plans and living wills. J Perinatal Ed. 2005;14:46-48. 2. Lothian J. Birth plans: the good, the bad, and the future. J Obstet Gynecol Neonatal Nurs. 2006;35:295-303.
58
NEWBORN
3. Lundgren I, Berg M, Lindmark G. Is the childbirth experience improved by birth plans? J Midwifery Women's Health. 2003;48:322-328. 4. Lothian JA. The birth plan revisited. J Perinatal Ed. 2000;9: viii-xi. 5. Perez PG. Birth plans: are they really necessary? Pro position. MCN: Am J Matern Child Nurs. 2005;30:288. 6. Lepsch S. Birth plans: are they really necessary? Con position. MCN: Am J Matern Child Nurs. 2005;30:289. 7. Deering SH, Heller J, McGaha K, Heaton J, Satin AJ. Patients presenting with birth plans in a military tertiary care hospital: a descriptive study of plans and outcomes. Mil Med. 2006;171:778-780. 8. Whitford HM, Hillian EM. Women's perceptions of birth plans. Midwifery. 1998;14:248-253.
& INFANT NURSING REVIEWS