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Prenatal Birth Planning for Families of the Imperiled Newborn
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Prenatal Birth Planning for Families of the Imperiled Newborn Nancy K. English and Karen L. Hessler
Correspondence Nancy K. English, PhD, APRN, CNS, CT, University of Colorado, College of Nursing, 1590 Cook Street, Denver, CO 80206. [email protected]
ABSTRACT Guidelines have not been established to address the needs of parents with imperiled newborns due to the infrequency of this obstetric situation. In this article we offer an approach to prenatal care planning for imperiled newborns and their families. Use of an interdisciplinary team and family involvement are the foci of the care planning process, which result in a perinatal birth plan that reflects parental values and ethical guidelines.
JOGNN, 42, 390-399; 2013. DOI: 10.1111/1552-6909.12031 Accepted January 2013
Keywords perinatal palliative care hospice prenatal birth planning antenatal birth planning lethal fetal diagnosis congenital anomaly decision making imperiled newborn high-risk pregnancy
Case Nancy K. English, PhD, APRN, CNS, CT, is an adjunct professor in the College of Nursing, University of Colorado, Denver, CO. Karen L. Hessler, PhD, RN, FNP-C, is an assistant professor in the School of Nursing, University of Northern Colorado, Greely, CO.
The authors report no conflict of interest or relevant financial relationships.
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n the fall of 2009 we received the official word that our as yet unborn baby, Gabriel, had Trisomy 18. The perinatologist told my husband over the phone that termination was recommended as soon as possible, as he was 18 gestational weeks old. No other options were provided or discussed. As an experienced labor and delivery nurse, I knew Trisomy 18 was terminal. Devastated, we resourced our care providers for more direction and a sense of peace. None would come. We were not offered any anticipatory guidance from a palliative care team or an opportunity to engage in advance care birth planning. We felt very much on our own to make an impossible decision.
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Two ultrasounds showed severe cardiac defects, so Gabe was not expected to survive until term. After months of anticipatory grief we finally convinced our obstetrician, 2-weeks postterm, to induce labor. As we walked into the labor and birthing room, I thought of all of the families that I had helped through fetal demise. Now my family would be the recipient of that care. Admission consisted of the nurses trying to convince us to sign a do-not-resuscitate (DNR) order for our unborn child. We explained that we knew he was terminal
but wanted him to feel love from us and comfort from his caregivers. We asked them to just treat him like any other baby delivered here. After several hours of labor without fetal heart rate monitoring, Gabriel Ray came into the world. His gray limp, motionless, body covered in vernix was placed on my chest. I began to wipe him off and keep him warm while the nurses and doctors themselves stood motionless. It was as if my husband and I were the only ones conscious that our baby had been born. The stimulation from me drying him brought about a soft cry, and the pediatrician heard a faint heartbeat. With more stimulation and warm blankets, Gabriel was moving, crying, and ready for love. The pediatrician and nurses continued their examination, pointing out Trisomy 18 defects and neglecting to see the beauty of his face, his delicate little features, and soft baby skin. We were told we needed to be dismissed from the hospital 12 hours after delivery to go home and spend time with him. No one asked us if we wanted to be dismissed, even though I had just been through a delivery and as other mothers needed postpartum care and monitoring.
C 2013 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
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Afraid, unsure, confused, we asked the pediatrician at Gabe’s warmer what we should know, expect, and do. Her response was quite unbelievable, “You need to go home and look for a mortuary that can pick him up on the weekend.” We excused her nicely and took our Gabe home, still unsure of what to expect, feeling unsupported and dismissed in a very personal way. It was clear that out of sight for the doctors and nurses meant out of mind. At home we became hypervigilant. We expected every stretch or breath to be Gabe’s last. I pumped colostrum into a cup to feed him until he was ready to take a bottle. Thank goodness I was an experienced nurse or he would have died of starvation or dehydration. He continued to thrive and loved the outdoors but was frequently cyanotic, particularly with feedings. We broke down and called hospice for help when he was 2 months old. The first time we felt cared for and understood was when we met Mary, our hospice nurse, and Lani, our social worker. What a change from what we had experienced the last couple of months. Gabe was with us for 4 months and 1 day. He came to teach us about ourselves and our professions.
Background The experiences of more than 200 women and families in a prenatal palliative care consultation service drive our professional desire to provide a process for advance care birth planning. As professional nurses, we strive to provide an exemplar of birth planning in which active interprofessional collaboration, provision of advanced knowledge, and careful attention to the individuality of patients and families serve as a practice guide for all perinatal clinicians. The description of advance-care birth planning and palliative care herein is based on services provided to women in a high-risk, maternal-fetal newborn center in a large metropolitan area from 2006 to 2011. Upon hearing a devastating fetal diagnosis, women and their families are thrust into an emotional turmoil of not knowing what to expect for their infants, themselves, or their families (Aite et al., 2011). Moral dilemmas often result surrounding treatment decisions for the infant as well as lost hopes and dreams (Sandelowski & Barroso, 2005). Parents are suddenly confronted with troubling decisions such as whether to terminate or continue a pregnancy, and these decisions are clouded by thoughts of imminent death of the in-
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In prenatal birth plans, the infant’s needs are central to all decisions and actions.
fant. Inundated with information about the diagnosis, these women and families are challenged to seek guidance and resolution regarding how to plan for the remaining months of pregnancy. Those who make the decision to continue the pregnancy are often without professional guidance or support, yet they must plan for the birth of a seriously imperiled infant. Although no one can erase the anguish of these families, informed and thoughtful collaborative planning can lessen it (Kuebelbeck & Davis, 2011). To this end, offering families support for their intense grief while planning for the birth of their infants is crucial, and the advance-care birth plan (ACBP) facilitates such a process. The care planning process provides proactive management of newborn care concurrent with support and guidance for mothers/families. The ACBP is consistent with the recommendations of the Gunderson Lutheran Medical Foundation: Advance care planning is provided, which includes discussions of treatment and potential delivery options (e.g., cesarean birth), but goes beyond decisions to administer or withhold medical treatment. Advance care planning also includes education about what to expect, what options are available (e.g., environment; site of care; plans for photos, DVDs, and other mementoes), and exploration of what parents consider most important for their baby. The plan includes how parents wish to spend the last minutes, hours, or days of their child’s life. Birth plans include psychosocial, physical, and spiritual needs if the baby is stillborn or if the baby is born alive. (Limbo, Kobler, Toce, & Peck, 2009, p. 4) Explicit in an ACBP are options of palliative care offered to parents by care providers who place the infant’s needs as central to all decisions and actions. Parents may choose to receive palliative care in the home with community hospice services or in an acute care pediatric setting that offers a palliative care service. The goals of care are focused on comfort, bonding with family, and respecting the dignity of the brief life of the infant. Relief of the distressing symptoms rather
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The clinician recognizes that the responses of parents to grief and the potential death of their infants influence all decisions.
than modifying and or correcting the underlying condition(s) associated with the fetal/infant diagnosis is stressed (Sumner, 2010; Working Group, 2010). In the birth-planning phase, patient/familycentered care strategies are employed (Field & Berman, 2003). Interdisciplinary teams, use of evidence-based practice, and applying quality improvement measures as recommended by Finkelman and Kenner (2009) are integrated in the process of planning and implementing the birth plan.
Literature Review Prenatal advance-care birth planning within the context of palliative- and hospice-guided practice is a relatively new concept, and it has only recently been addressed in nursing literature (Wool, 2013). Best practice models concerning the value of documented ACBP are lacking, although increased attention to prenatal discussion with parents concerning decisions and the needs the imperiled newborn has been stressed by policy statements, clinical practice guidelines, and clinicians (Committee on the Fetus and Newborn, American Academy of Pediatrics, 2007; Batton, 2009; Bennett, Dutcher, & Snyder, 2011; Kattwinkel et al., 2010). Other clinicians specifically recommend prenatal planning when preterm birth, severe birth anomalies, or lethal fetal anomalies are anticipated (Catlin, 2005; Kobler & Limbo, 2011; Leuthner & Jones, 2007; Munson & Leuthner, 2007; Sumner, 2010). In a retrospective review of the records of 196 infant deaths in the neonatal intensive care setting, researchers found that infants whose parents had a prenatal palliative care consultation had fewer resuscitation attempts prior to their deaths (Pierucci, Kirby, & Leuthner, 2001). This conclusion suggests that prenatal palliative care consultations may have an effect similar to advance care planning, and proactive discussions help mitigate the complexity of moral and ethical decisions surrounding the care of seriously ill infants. Moral dilemmas faced by health care providers responsible for newborn care are acknowledged by the American Academy of Pediatrics (AAP) Commit-
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tee on the Care of the Fetus and Newborn (the Committee): If intensive treatment uniformly resulted in survival with an acceptable quality of life, it would be the obvious choice for all severely ill infants. This is not always the case. Yet if intensive treatment is offered to all seriously ill infants, some may survive with significant neurodevelopment disability and severe mental retardation. If non-intensive care and treatment is not offered, death of the newborn is certain. (2007, p. 401) The committee recognizes that care providers faced with such dilemmas cannot be expected to resolve or make the ultimate decision concerning newborn care. Rather, the committee recommends that those involved with prenatal and neonatal care “encourage parents to become involved and active participants in the decisionmaking process concerning the postnatal management of their infant” (2007, p. 403). The Committee also issued a definitive statement regarding the initiation of or withdrawal of intensive care: “Decisions should be made jointly by the health care team and the infant’s family on the basis of the infant’s physiologic maturity, the infant’s medical condition, including any serious birth defects or medical complications, and the probabilities of death and severe disability based on available data” (p. 402). Implications are that parents and the neonatal team will reach a consensus of decisions concerning the special needs of the newborn prior to birth. In describing their perinatal palliative care service, Munson and Leuthner (2007) and Leuthner and Jones (2007) exemplified the above recommendations by involving parents soon after a serious fetal diagnosis is given. In their model, palliative care is offered as a viable option when the fetal diagnosis foretells the possibility of neonatal death or in cases with a high degree of prognostic uncertainty. Boss, Hutton, Sulpar, West, and Donohue (2008) conducted semistructured interviews with 26 mothers after the death of their neonates to determine what they remembered about prenatal discussion of delivery room resuscitation. Although the majority of parents felt they did participate in resuscitation decisions, a few remembered discussing these issues prenatally. The investigators identified another theme indicating that the mothers’ decisions were based on emotion, hope, and religious convictions (Boss et al.).
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In administering holistic and comprehensive care for patients and families, nurses are in the ideal position to facilitate birth planning that involves the family in anticipatory guidance and planning. The AAP statements provide guidance and direction for the care of the imperiled newborn. Presently, little direction is offered regarding guiding parents in planning for their newborns when life and or death decisions are questioned. Despite limitations of the current literature, implications suggest that a prenatal discussion between parents and providers of newborn care is recommended when the birth of an imperiled infant is anticipated. A written ACBP for these families would be of value to professional caregiver teams responsible for pre and postnatal care. These include palliative interventions where the goal is to maximize the infant’s comfort and care. Decisions regarding newborn care can be made in conjunction with parents who have been fully informed regarding the fetal diagnosis and the current evidence regarding prognosis. Choices for newborn care offered to parents can be based on what type of care best benefits their newborns. Information must include expectations regarding the risks or ramifications associated with the ACBP.
Table 1: Shared Decision Making in Prenatal Palliative Care A. Exploring the experience of the pregnancy and impact of fetal diagnosis: • Tell me about when you first heard about your baby’s diagnosis. • Have you or any of your friends or family members heard about this fetal diagnosis before? • Do you know anyone whose baby has had this diagnosis? o What was their experience like? B. Facilitating a therapeutic relationship: • Have you named your baby? If not, How would you like us to refer to your baby? • I really want to understand your concerns so we can answer your questions as best we can. • I will share what I know so we can make these decisions together. • We are always available for further discussion. • You do not have to make your plans and decisions alone. • Who supports you now?
Guide for Advance Care Birth Planning Initial Consultation The consultation with parents initiates the discussion of important decision points and treatment options for the mother and infant. These points involve management of the pregnancy until birth, possibility of preterm birth, labor considerations, mode of birth, immediate newborn care, and follow-up neonatal care. This information shared between parents and professionals serves as a foundation for the ACBP. The ensuing discussion with parents follows the principles of a shared decision-making model (Barry & Leviton, 2012). The shared decision-making format is critical when parents and physicians are making value-laden decisions involving the needs of the unborn infant. Parents assume an equal voice in decisions concerning the pregnancy, the infant, what happens at birth, and what happens after birth. The main components of decision making include exploring the experience, facilitating a therapeutic relationship, presenting information, acknowledging uncertainties, recognizing parents’ values and goals, and confirming parents’ interpretation of the discussion. Table 1 offers clinicians a guide for facilitating the initial consultation with parents in a shared decision-making format.
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C. Presenting information and evidence in simple terms: • Often babies with this diagnosis have some other problems that may or may not be helped. • I would like you to see my colleague who an expert in _____, and he/she could tell you more concerning ____ • Based on what we know . . . . • Babies with your baby’s diagnosis are usually born a little past their due dates and may live for a few hours. • This is a lot of information; I will send you a copy of today’s discussion. D. Acknowledging uncertainties in birth outcomes: • Babies with your baby’s diagnosis may live hours, days, or months, we cannot be certain until after he or she is born. • Sometimes babies with this diagnosis are born prematurely and, as their lungs are just too little, they are unable to take in air. • It is hard to say exactly how long a baby with ______ diagnosis will live, but we will make sure he/she is kept comfortable. E. Recognizing parents’ values and goals:
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Table 1: Continued • After your baby is born, we could again look at how she/he is breathing and we could talk again about what care you would like your baby to receive. • We support your decisions for giving your baby all the love and comfort after he/she is born. • I am going to suggest . . . . F. Confirming parents’ interpretation of discussion: • Sometimes all this information is difficult to understand,especially when it is about your baby. • Tell me what you have heard us saying. • Often the words we say are difficult to understand, how do you see things? • If you need more time, we can schedule another appointment . . . .
The perinatal team, including neonatologist, prenatal and palliative care clinicians offer parents support and information within their scope of practice. The neonatologist explains how the fetal diagnosis could affect the infant’s birth and life and what can be expected at birth and after birth. The prenatal care provider addresses any changes concerning the management of the pregnancy, labor, and birth that may be altered by the fetal diagnosis. The palliative care clinician provides information on support services available such as community hospice and may address the question parents are afraid to ask, “Will my baby die?” The response requires honest, simple statements based on the best evidence concerning the fetal diagnosis. The clinician could respond, “We do not know how long your baby will live; it could be minutes, hours, or weeks before (name of baby) dies” or “Because of the diagnosis your baby will not able to breathe and will die soon after birth.”
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The Neonatologist’s Role in Birth Planning The neonatologist is the pediatric specialist best prepared to offer parents information regarding the fetal diagnosis, etiology, and guidance concerning prognosis. Morrow (2000) described the role of the neonatologist as one who, “anticipates the vulnerability of parents and gently guides them in decisions” where uncertainty often prevails (p. 1147). Neonatologists are also well informed regarding immediate and continuing health needs as the infant develops, including how the diagnosis affects the infant’s quality of life. The neonatologist gives parents answers to the following questions based on the best evidence: What is the cause of the problem? Is there more than one cause? Can a prognosis be established even though the evidence supporting the fetal diagnosis is uncertain? Parents consider the risk and benefits associated with interventions regarding delivery room care, for example, intubation, mechanical ventilation, and cardiopulmonary resuscitation (CPR). A conversation around these topics could begin as follows: “From our discussion regarding the diagnosis, we need to plan care for when your baby is born. The baby may have problems with breathing or heart functions. We need to go over the intensity with which you might want us to proceed.” The neonatologist must be conscious of the impact of specific language when providing information. If terms such as life prolonging and life limiting are used, parents may interpret them as meaning their infants will live despite the evidence to the contrary. More useful phrases include mechanical assistance to breathe or CPR will not help the baby’s problems and it could cause the baby more pain.
The professional team asks parents to consider agonizing decisions concerning the life and death of their infants. The crisis of anticipating loss of an infant while simultaneously planning for birth can cause emotional highs and lows for parents during the remaining months of the pregnancy. Time is essential for parents to process complex information and consequential decisions. Often parents will need several conversations with the perinatal and palliative care team concerning such crucial decisions. Parents should be reassured that the perinatal professionals are available for continuing discussion throughout the pregnancy.
Sometimes parents request interventions that are not in the best interest of their infants. The following four-tiered decision guide is helpful for the neonatologist when advising parents: (a) mandatory life sustaining interventions, that is, the physician is not obligated to follow a parent’s request if it would not be in the best interest of the infant; (b) optional care, either comfort care or life-sustaining care, that is, the physician views the risks of further treatment as very high and the benefits of that treatment as uncertain. Parents can either accept or reject further life-sustaining support; (c) investigational that includes all new and experimental treatments as well as some fetal surgeries where the outcome is not fully known. Parents must fully consent to further treatment, and (d) unreasonable, indicating no obligation of the physician to provide further life-sustaining interventions.
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Parents often demand aggressive medical interventions that the physician does not believe can be effective (Ahluwalia, Lees, & Paris, 2008). Munson and Leuthner (2007) recommended that prenatal consultations include prognosis in the context of the fetal diagnosis and consideration of how long the newborn may survive after birth. For example, is it likely that the infant will live minutes, hours, days, or longer? If the infant lives, will he or she be dependent on mechanical intervention for survival? Is perinatal hospice care available if the newborn could live more than a few days? It is impossible to know for sure how long some infants may survive. An educated estimate of survival time may be offered or the clinician may say, “We do not know.” This offers parents options in planning postnatal care such as trial neonatal intensive care stay or home hospice care. The dialogue with the neonatologist helps guide and prepare parents for uncertainties at the time of birth. Such uncertainties are included in the written ACBP. Often decisions are delayed until after the birth for the prenatal diagnosis to be confirmed or to offer parents time to process the information as well as their grief.
The Role of the Prenatal Care Provider (Advanced Practice Nurse/Midwife/Obstetrician/Maternal or Fetal Medicine Consultant) in Birth Planning Decisions regarding how the pregnancy is managed continue with the mother’s primary prenatal care provider who may seek consultation regarding confirmation of the fetal diagnosis with the maternal fetal medicine (MFM) specialist (perinatologist) and the genetic counselor. The prenatal care provider considers if the goals for the pregnancy (mother or baby) are altered because of a change in the expected outcomes of the pregnancy. Are there decisions regarding fetal monitoring, mode of delivery, or maternal history that may influence the labor, birth, and newborn care? Any information that would help the delivery room team offer the highest quality of care in line with the parents’ preference for care is included in the ACBP.
Palliative Care in Birth Planning A palliative care clinician, such as an advanced practice nurse or clinical social worker, assumes the role as a pregnant woman’s care coordinator throughout the remaining months of the pregnancy and neonatal period (Leuthner & Jones, 2007). The goal of the palliative care clinician is
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to build a relationship of consistency and trust with the mother and her family, in which decisions concerning the fetus or newborn are made with support and guidance. The coordinator prepares the written ACBP, including information and recommendations from other team members and the parents’ preferences for care. Parents may include pictures, special rituals at the time of birth, and small mementos such as a lock of hair or hand and footprints. Table 2 offers the clinician a guide to preparing a written birth plan considering specific requests of the parents. Many contextual factors may influence a parents’ decision making and birth planning (Derrington & Dwortez, 2011). Assessment of psychosocial, spiritual, and religious factors as well as the mother’s emotional strength should continue as the pregnancy progresses. Table 3 provides ways to counsel parents and guide decisions and includes questions concerning contextual influences that the palliative care clinician can consider when preparing the birth plan. The clinician recognizes that the responses of parents to grief and the emotions surrounding anticipating the loss of an infant will invariably influence decisions (Bijma et al., 2005; Molewijk, Kleinlugtenbel, & Widdershoven, 2011). With gentle guidance and extreme sensitivity to the needs of the grieving mother-to-be and her family, the palliative care clinician guides and supports the parents in their difficult decisions concerning their infants.
Preparing a Written Plan The written plan is a summary of previous conversations and consultations reflecting the parents’ decisions and the perinatal teams recommendations for care of the newborn at the time of birth and after birth. The final plan provides an unequivocal record of goals for newborn care as determined by the parents and the perinatal teams and specifies personal values and recommendations. Parents review and approve the birth plan and are aware that they can change or revoke any decisions concerning their infants if new information is presented after the birth. Jonsen, Seigler, and Winslade (2002) provided an easily read one-page document known as the Four Topics Method: (a) medical indications, (b) preferences of parents, (c) quality of life, and (d) contextual issues. Although outlined to offer clinicians important aspects of ethical decision making, the 4 Topics Method lends itself to summarizing the written ACBP (see Table 4). Each section is written in
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Table 2: Questions for Mother/Parents in Preparing the Birth Plan
Table 3: Contextual Influences: Assessment 1. Have you or someone close to you experienced the
Identity of the newborn
What is the name of your baby? If not named, how would you like us to refer to your baby?
Family Education
Would you like help in telling your other family members such as your
loss of a baby? 2. Have you ever experienced a time in your life when you felt very sad? 3. If you had a prior pregnancy, was there a time when you felt sad?
children, siblings, or parents about your baby’s problems?
a. Did you share this information with your health care provider?
a. If you have children, have they experienced anyone close to them dying such as a grandparent or a pet? b. What helped with that experience? Labor/Delivery Process
Who would you like to be with you during labor? Would you like anything special to help you relax during labor, e.g., music, a shower, or a massage? Would you like to hear your baby’s heart beat? Would you like your (husband, partner, mother, other loved one) to cut the baby’s cord? Who would you like to be present after the birth of your baby?
Postpartum Actions
Would you like your baby to be baptized or dedicated? Would you like to bathe and dress your baby? Would you like to offer your baby some
b. What helped you most during this time? 4. Does your partner, mother, sister, other immediate family, and/or close friends support you in your decisions about your baby? Your pregnancy? 5. Do your friends and colleagues know that your baby may die? 6. How have you explained your baby’s problems to your other children (if any)? 7. How have you been sleeping since hearing about your baby’s diagnosis? 8. Would you consider yourself a spiritual or religious person/family? a. If so how do your spiritual/religious beliefs help you now? b. Do you have a spiritual teacher/religious book or teachings that help you with your decisions? 9. Are there any specific traditions in your family that you would like us to know? 10. Do you have any logistical concerns such as: a. Financial b. Transportation
expressions of breast milk or formula? Or, would you like your baby to be put to your breast? Would you like to have any special memories of you baby such as the cord clamp, ID band, or lock of hair? Would you like to have photographs taken after birth? If your baby dies, do you want photos then? Planning for Imminent Death
Would you like to speak to someone from hospice? Would you like help in planning a memorial service for your baby? Would you like to have someone from a Funeral Home to talk to?
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a concise manner in simple language that can be understood by parents and serves as a directive to the delivery room/neonatal team. Medical Indications (Section 1) is a brief medical history of the fetal diagnosis including tests and other pediatric consultations. Parent Preferences outlines decisions concerning immediate delivery room care of the newborn. Often the delivery room team is not the same team of physicians and nurses that provided prenatal care, thus a definitive outline regarding whether to proceed with emergency newborn care, transport the newborn to the intensive care setting, or allow the newborn to remain with parents is needed. If the newborn remains with the parents, the goal of care is the comfort of the
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infant and support for the parents. The neonatal nurse practitioner or neonatologist who is familiar with palliative care for neonates provides orders that include (a) symptom management for the newborn; (b) nasal/oral suctioning; (c) oxygen via cannula); (d) breast milk or formula if the newborn expresses hunger; (e) respiratory distress; opioids given sublingually; (f) cardiac / respiratory resuscitation status; and (g) family involvement in offering newborn care such as bathing and dressing (British Association of Perinatal Medicine, 2010; Leuthner & Jones, 2007; Williams, Munson, Zupancic, & Kirpaiani, 2008). The section Quality of Life reflects the parent’s definition of quality that involves their view of the pregnancy, the fetal diagnosis, and how it has affected their everyday life. Contextual influences are how the parents receive support from friends and the community and may include any financial concerns of the family.
Table 4: Guide for Using the 4 Topic Method 1. Medical Indications
• Fetal Diagnosis–including confirmation or lack of confirmation for any disorders • A List of all health care providers of prenatal care • Labor Consideration/mode of delivery/fetal monitoring
2. Parental Preference
• Summary of parents’ understanding of fetal diagnosis • Parents decisions regarding neonatal care for the newborn
Advance care plans emphasize the infants’ immediate needs for comfort, warmth, symptom relief, and bonding to family.
Additional information is summarized in the discussion section where parents’ concerns and questions are answered by the perinatal team. The final section outlines the specific Recommendations involving follow up infant and parents care. For example, specific contact information for the photographer, spiritual care provider, and or mortuary service is included. If parents elect to receive palliative care as offered in a community hospice, coordination of care between birth center and community hospice is facilitated by the palliative care clinician, case manager and or social worker. Admission criteria for home hospice or in patient hospice setting include confirmation of pre or postnatal diagnosis. This diagnosis is not amenable to curative efforts or the options that are available would mean extreme suffering for the infant (e.g., renal agenesis, requiring kidney dialysis or severe pulmonary hypoplasia requiring prolonged mechanical ventilation). The prognostic criteria regarding the specific diagnosis are based on the known evidence and certified by a neonatologist or other pediatric professional and indicate that the infant could die within six months. In addition, parents must agree that their infants will receive palliative care (Friebert & Osenga, n.d.). Despite advances in prenatal diagnosis technology, a significant degree of prognostic uncertainty may exist until after the birth of the infant. Often parents are unable to commit to community hospice care in prenatal care planning, thus this remains an open-ended option for infant care and parental support.
• Neonatologist or neonatal nurse practitioner order set • Cardiac or respiratory resuscitation directive 3. Quality of Life
• Summary of the issues important to the parents and immediate family
4. Contextual Influences
• The multiple issues that may impact parent/family decisions ◦ Financial concerns ◦ Social support ◦ Personal and/or religious-/faithbased values ◦ Cultural influences
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Parents and the perinatal palliative care team reach consensus for an approach to care that emphasizes the infant’s immediate needs for comfort, warmth, and symptom relief as well as bonding to parents and family. The final ACBP represents consensus of parents and the perinatal team regarding a compassionate and ethically appropriate plan for the special infant. Table 5 provides an example ACBP with an Illustrated Case.
Communication of the Completed Advance Care Birth Plan On completion of a written plan, a copy of the ACBP is given to the parents and the perinatal
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Table 5: Advance Care Birth Plan for: Ana Rose M. Prepared by M. Noble APRN Palliative Care Mother: Jennifer M. Father: Emilo M.
MR: xxxxxxx
DOB 11-16-1976
G3P2
EDD 10-05-07
Siblings: Beth 10y Adam 4y
Medical Indications
Parent Preferences
Fetal Diagnosis: Trisomy 13
Jennifer and Emilo are sadly aware that the diagnosis of
Diagnosis confirmed by: Stodard Genetics Laboratory (07/21/2007) Genetic Counselor: Ann Weise, Prenatal Care
Trisomy 13 means that Ana Rose may die before her arrival or could die soon after birth. They do not want Ana to have prolonged suffering or distress. They agree to offer Ana love and care when she is born and would like
Stephanie Jones MD, Eastside Women’s Care Neonatology: John Harris, MD
to keep her close so Beth and Adam can meet their sister. Dr. Harris recommends that Ana be offered:
Palliative Care: Mary Noble APRN
Oral and nasal suctioning
Labor/Delivery Considerations
Oxygen (humidified) by canula
Jennifer has had two vaginal deliveries with a Hx of
If expresses hunger offer nourishment
short labors. She agrees to NO C-Section if Ana Rose is in distress. External Fetal Monitoring only.
Liquid Morphine Sulfate (SL) for distress DO NOT attempt resuscitation if Ana Rose stops breathing
Quality of Life
Contextual Issues
Jennifer and Emilio have been married for a little over a
Jennifer and Emilio work very long hours. Jennifer’s mother,
year. They both were very excited about this
Corine, lives close and helps with taking care of Beth and
pregnancy. Their life centers on family life, and work.
Adam. Jennifer has shared Ana’s problems with her
Jennifer is a second grade teacher in a local public school and shares she loves her job and teaching. Emilio has only recently found full time work as an auto mechanic. When hearing Ana’s diagnosis they were both
principal and a few friends. She is concerned about how to tell her second grade class. Since this is Emilio’s first child he is grateful for support of friends but is concerned about taking off from work. Emilio and Jennifer like to talk about their problems and have
devastated. They shared they had no idea what to
agreed that they will love Ana “no matter what”! They do
expect.
not attend any specific church or believe in a particular
Beth has shared with her class that her baby sister will die and that all her classmates cried.
religion. They would like to have Ana receive a blessing from the hospital chaplain at her birth.
Note. Jonsen, A. Seigler, W., & Winslade, W. (2002). Four Topics Method. Clinical Ethics: A practical approach to ethical decisions in clinical medicine (5th ed.). New York, NY: McGraw-Hill. Reproduced with permission of The McGraw-Hill Companies.
care providers and placed in the mothers’ medical record. It may be necessary to designate specific neonatal staff to ensure that the on call neonatal team has a copy of the ACBP. Parents are asked to bring the completed ACBP to the Birth Center at the time of delivery or when labor begins. Communication of the ACBP to all staff members who will be caring for the mother and infant is essential.
The ACBP provides a framework to begin the difficult yet fulfilling work of helping parents when they receive a serious fetal diagnosis. The perinatal palliative care advanced practice nurse pays
close attention to the desires of the parents, considers the current evidence base for each imperiled newborn, and offers guidance, emotional support, and education to women and families in making informed decisions after receiving a serious fetal diagnosis. As a result, a special space is created for the newborn as a member of the family. The ACBP provides a process for obstetricians, neonatologists, and palliative care providers to engage in dialogues with the family concerning the fetal diagnosis and in planning care for the infant. Only within a safe and nurturing environment can crucial decisions, parental grief, and personal values can be explored. Thoughtful perinatal advance care planning offers parents and providers a dialogue in which parental autonomy is
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honored and the special needs of the newborn are addressed with dignity and caring. With this intention, we hope that ACBP will emerge as an exemplary and essential tool reflecting decisions that are ethically appropriate while expressing compassion and concern for the newborn.
Finkelman, A., & Kenner, C. (2009). Teaching IOM: Implications of the Institute of Medicine Report for Nursing Education. Silver Spring, MD: American Nurses Association Publishers. Friebert, S., & Osenga, K. (n.d.). Pediatric palliative care referral criteria. Retrieved from http://www.capc.org/tools-for-palliativecare-programs/clinical-tools/consult-triggers/pediatric-palliativecare-referral-criteria.pdf Jonsen, A., Seigler, W., & Winslade, W. (2002). Clinical bioethics: A
Acknowledgement Funded in part by Colorado Trust Foundation, Pediatric Palliative Initiative, 2001–2004. This article is modeled after a program created by Dr. English (grant coordinator) and Dr. Susan Townsend (co-investigator).
REFERENCES Ahluwalia, J., Lees, C., & Paris, J. (2008). Decisions for life made in perinatal period: Who decides and on which standards? Archives of Diseases of Child Fetal Neonatal Education, 93(5), F332–F334. Aite, I., Zaccara, A., Mirante, A., Nahom, A., Trucchi, A., Capolupo, I., & Bagolan, P. (2011). Antenatal diagnosis of congenital anomaly: A really traumatic experience? Journal of Perinatology, 31, 760– 763. Barry, M. J., & Leviton, S. (2012). Shared decision making—The pinnacle of patient-centered care. New England Journal of Medicine, 366, 780–781. Batton, D. G. (2009). Antenatal counseling regarding resuscitation at an extremely low gestation age. Pediatrics, 124(1), 422–427. Bennett, J., Dutcher, J., & Synders, M. (2011). Embrace: Addressing anticipatory grief and bereavement in the perinatal population. Journal of Perinatal and Neonatal Nursing, 25(1), 72–76. Bijma, H. H., Wildschut, H. I., vander Heide, A., Passchier, J., Wladimiroff, J. W., & Vander Maas, P. J. (2005). Parental decisionmaking after ultrasound diagnosis of a serious fetal abnormality. Fetal Diagnostic Therapy, 20(5), 321–327. Boss, R. D., Hutton, N., Sulpar, I. J., West, A. M., & Donohue, P.
practical guide to decision making in clinical medicine (5th ed.). New York, NY: McGraw-Hill. Kattwinkel, J., Perlman, J. M., Aziz, K., Colby, C., Fairchild, K., Gallagher, J., . . . American Heart Association. (2010). Neonatal resuscitation guidelines: 2010 American Heart Association guidelines for cardiopulmonary resuscitation and emergency cardiovascular care. Pediatrics, 126(5), e1319–e1344. doi:101542/peds.2010-2972B Kobler, K., & Limbo, R. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal and Neonatal Nursing, 25(1), 32–41. Kuebelbeck, A., & Davis, D. (2011). A gift of time: Continuing your pregnancy when your baby’s life is expected to be brief. Baltimore, MD: Johns Hopkins University Press. Leuthner, S., & Jones, E. L. (2007). Fetal concerns program: A model for perinatal palliative care. American Journal of Maternal/Child Nursing, 32(5), 272–278. Limbo, R., Kobler, R. Toce, S., & Peck, T. (2009). Resolve through sharing: Position paper on perinatal palliative care. La Crosse, WI: Gunderson Lutheran Medical Foundation, Inc. Molewijk, B., Kleinugtenbelt, D., & Widdershoven, G. (2011). The role of emotions in moral case deliberation: Theory, practice, and methodology. Bioethics, 25(7), 383–393. Morrow, J. (2000). Making mortal decisions at the beginning of life: The case of impaired and imperiled infants. Journal of the American Medical Association, 284(9), 1146–1147. Munson, D., & Leuthner, S. R. (2007). Palliative care for the family carrying a fetus with a life limiting diagnosis. Pediatric Clinics of North America, 54, 787–798.
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Neonatal Nursing, 34(3), 307–318. Sumner, L. (2010). Pediatric hospice and palliative care. In B. R. Ferrell & N. Coyle (Eds.), Oxford textbook of palliative nursing (3rd ed., pp. 997–1017). New York, NY: Oxford University Press. Williams, C., Munson, D., Zupancic, J., & Kirpaiani, H. (2008). Supporting bereaved parents: Practical steps in providing compassionate perinatal and neonatal end of life care. Seminars in Fetal and Neonatal Medicine, 13, 335–340. Wool, C. (2013). State of the science on perinatal palliative care. Journal of Obstetric, Gynecologic & Neonatal Nursing, XXX in this series. Working Group Palliative Care (2010). A framework for clinical
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Prenatal Birth Planning for Families of the Imperiled Newborn Nancy K. English and Karen L. Hessler
Correspondence Nancy K. English, PhD, APRN, CNS, CT, University of Colorado, College of Nursing, 1590 Cook Street, Denver, CO 80206. [email protected]
ABSTRACT Guidelines have not been established to address the needs of parents with imperiled newborns due to the infrequency of this obstetric situation. In this article we offer an approach to prenatal care planning for imperiled newborns and their families. Use of an interdisciplinary team and family involvement are the foci of the care planning process, which result in a perinatal birth plan that reflects parental values and ethical guidelines.
JOGNN, 42, 390-399; 2013. DOI: 10.1111/1552-6909.12031 Accepted January 2013
Keywords perinatal palliative care hospice prenatal birth planning antenatal birth planning lethal fetal diagnosis congenital anomaly decision making imperiled newborn high-risk pregnancy
Case Nancy K. English, PhD, APRN, CNS, CT, is an adjunct professor in the College of Nursing, University of Colorado, Denver, CO. Karen L. Hessler, PhD, RN, FNP-C, is an assistant professor in the School of Nursing, University of Northern Colorado, Greely, CO.
The authors report no conflict of interest or relevant financial relationships.
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n the fall of 2009 we received the official word that our as yet unborn baby, Gabriel, had Trisomy 18. The perinatologist told my husband over the phone that termination was recommended as soon as possible, as he was 18 gestational weeks old. No other options were provided or discussed. As an experienced labor and delivery nurse, I knew Trisomy 18 was terminal. Devastated, we resourced our care providers for more direction and a sense of peace. None would come. We were not offered any anticipatory guidance from a palliative care team or an opportunity to engage in advance care birth planning. We felt very much on our own to make an impossible decision.
I
Two ultrasounds showed severe cardiac defects, so Gabe was not expected to survive until term. After months of anticipatory grief we finally convinced our obstetrician, 2-weeks postterm, to induce labor. As we walked into the labor and birthing room, I thought of all of the families that I had helped through fetal demise. Now my family would be the recipient of that care. Admission consisted of the nurses trying to convince us to sign a do-not-resuscitate (DNR) order for our unborn child. We explained that we knew he was terminal
but wanted him to feel love from us and comfort from his caregivers. We asked them to just treat him like any other baby delivered here. After several hours of labor without fetal heart rate monitoring, Gabriel Ray came into the world. His gray limp, motionless, body covered in vernix was placed on my chest. I began to wipe him off and keep him warm while the nurses and doctors themselves stood motionless. It was as if my husband and I were the only ones conscious that our baby had been born. The stimulation from me drying him brought about a soft cry, and the pediatrician heard a faint heartbeat. With more stimulation and warm blankets, Gabriel was moving, crying, and ready for love. The pediatrician and nurses continued their examination, pointing out Trisomy 18 defects and neglecting to see the beauty of his face, his delicate little features, and soft baby skin. We were told we needed to be dismissed from the hospital 12 hours after delivery to go home and spend time with him. No one asked us if we wanted to be dismissed, even though I had just been through a delivery and as other mothers needed postpartum care and monitoring.
C 2013 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses
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Afraid, unsure, confused, we asked the pediatrician at Gabe’s warmer what we should know, expect, and do. Her response was quite unbelievable, “You need to go home and look for a mortuary that can pick him up on the weekend.” We excused her nicely and took our Gabe home, still unsure of what to expect, feeling unsupported and dismissed in a very personal way. It was clear that out of sight for the doctors and nurses meant out of mind. At home we became hypervigilant. We expected every stretch or breath to be Gabe’s last. I pumped colostrum into a cup to feed him until he was ready to take a bottle. Thank goodness I was an experienced nurse or he would have died of starvation or dehydration. He continued to thrive and loved the outdoors but was frequently cyanotic, particularly with feedings. We broke down and called hospice for help when he was 2 months old. The first time we felt cared for and understood was when we met Mary, our hospice nurse, and Lani, our social worker. What a change from what we had experienced the last couple of months. Gabe was with us for 4 months and 1 day. He came to teach us about ourselves and our professions.
Background The experiences of more than 200 women and families in a prenatal palliative care consultation service drive our professional desire to provide a process for advance care birth planning. As professional nurses, we strive to provide an exemplar of birth planning in which active interprofessional collaboration, provision of advanced knowledge, and careful attention to the individuality of patients and families serve as a practice guide for all perinatal clinicians. The description of advance-care birth planning and palliative care herein is based on services provided to women in a high-risk, maternal-fetal newborn center in a large metropolitan area from 2006 to 2011. Upon hearing a devastating fetal diagnosis, women and their families are thrust into an emotional turmoil of not knowing what to expect for their infants, themselves, or their families (Aite et al., 2011). Moral dilemmas often result surrounding treatment decisions for the infant as well as lost hopes and dreams (Sandelowski & Barroso, 2005). Parents are suddenly confronted with troubling decisions such as whether to terminate or continue a pregnancy, and these decisions are clouded by thoughts of imminent death of the in-
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In prenatal birth plans, the infant’s needs are central to all decisions and actions.
fant. Inundated with information about the diagnosis, these women and families are challenged to seek guidance and resolution regarding how to plan for the remaining months of pregnancy. Those who make the decision to continue the pregnancy are often without professional guidance or support, yet they must plan for the birth of a seriously imperiled infant. Although no one can erase the anguish of these families, informed and thoughtful collaborative planning can lessen it (Kuebelbeck & Davis, 2011). To this end, offering families support for their intense grief while planning for the birth of their infants is crucial, and the advance-care birth plan (ACBP) facilitates such a process. The care planning process provides proactive management of newborn care concurrent with support and guidance for mothers/families. The ACBP is consistent with the recommendations of the Gunderson Lutheran Medical Foundation: Advance care planning is provided, which includes discussions of treatment and potential delivery options (e.g., cesarean birth), but goes beyond decisions to administer or withhold medical treatment. Advance care planning also includes education about what to expect, what options are available (e.g., environment; site of care; plans for photos, DVDs, and other mementoes), and exploration of what parents consider most important for their baby. The plan includes how parents wish to spend the last minutes, hours, or days of their child’s life. Birth plans include psychosocial, physical, and spiritual needs if the baby is stillborn or if the baby is born alive. (Limbo, Kobler, Toce, & Peck, 2009, p. 4) Explicit in an ACBP are options of palliative care offered to parents by care providers who place the infant’s needs as central to all decisions and actions. Parents may choose to receive palliative care in the home with community hospice services or in an acute care pediatric setting that offers a palliative care service. The goals of care are focused on comfort, bonding with family, and respecting the dignity of the brief life of the infant. Relief of the distressing symptoms rather
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The clinician recognizes that the responses of parents to grief and the potential death of their infants influence all decisions.
than modifying and or correcting the underlying condition(s) associated with the fetal/infant diagnosis is stressed (Sumner, 2010; Working Group, 2010). In the birth-planning phase, patient/familycentered care strategies are employed (Field & Berman, 2003). Interdisciplinary teams, use of evidence-based practice, and applying quality improvement measures as recommended by Finkelman and Kenner (2009) are integrated in the process of planning and implementing the birth plan.
Literature Review Prenatal advance-care birth planning within the context of palliative- and hospice-guided practice is a relatively new concept, and it has only recently been addressed in nursing literature (Wool, 2013). Best practice models concerning the value of documented ACBP are lacking, although increased attention to prenatal discussion with parents concerning decisions and the needs the imperiled newborn has been stressed by policy statements, clinical practice guidelines, and clinicians (Committee on the Fetus and Newborn, American Academy of Pediatrics, 2007; Batton, 2009; Bennett, Dutcher, & Snyder, 2011; Kattwinkel et al., 2010). Other clinicians specifically recommend prenatal planning when preterm birth, severe birth anomalies, or lethal fetal anomalies are anticipated (Catlin, 2005; Kobler & Limbo, 2011; Leuthner & Jones, 2007; Munson & Leuthner, 2007; Sumner, 2010). In a retrospective review of the records of 196 infant deaths in the neonatal intensive care setting, researchers found that infants whose parents had a prenatal palliative care consultation had fewer resuscitation attempts prior to their deaths (Pierucci, Kirby, & Leuthner, 2001). This conclusion suggests that prenatal palliative care consultations may have an effect similar to advance care planning, and proactive discussions help mitigate the complexity of moral and ethical decisions surrounding the care of seriously ill infants. Moral dilemmas faced by health care providers responsible for newborn care are acknowledged by the American Academy of Pediatrics (AAP) Commit-
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tee on the Care of the Fetus and Newborn (the Committee): If intensive treatment uniformly resulted in survival with an acceptable quality of life, it would be the obvious choice for all severely ill infants. This is not always the case. Yet if intensive treatment is offered to all seriously ill infants, some may survive with significant neurodevelopment disability and severe mental retardation. If non-intensive care and treatment is not offered, death of the newborn is certain. (2007, p. 401) The committee recognizes that care providers faced with such dilemmas cannot be expected to resolve or make the ultimate decision concerning newborn care. Rather, the committee recommends that those involved with prenatal and neonatal care “encourage parents to become involved and active participants in the decisionmaking process concerning the postnatal management of their infant” (2007, p. 403). The Committee also issued a definitive statement regarding the initiation of or withdrawal of intensive care: “Decisions should be made jointly by the health care team and the infant’s family on the basis of the infant’s physiologic maturity, the infant’s medical condition, including any serious birth defects or medical complications, and the probabilities of death and severe disability based on available data” (p. 402). Implications are that parents and the neonatal team will reach a consensus of decisions concerning the special needs of the newborn prior to birth. In describing their perinatal palliative care service, Munson and Leuthner (2007) and Leuthner and Jones (2007) exemplified the above recommendations by involving parents soon after a serious fetal diagnosis is given. In their model, palliative care is offered as a viable option when the fetal diagnosis foretells the possibility of neonatal death or in cases with a high degree of prognostic uncertainty. Boss, Hutton, Sulpar, West, and Donohue (2008) conducted semistructured interviews with 26 mothers after the death of their neonates to determine what they remembered about prenatal discussion of delivery room resuscitation. Although the majority of parents felt they did participate in resuscitation decisions, a few remembered discussing these issues prenatally. The investigators identified another theme indicating that the mothers’ decisions were based on emotion, hope, and religious convictions (Boss et al.).
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In administering holistic and comprehensive care for patients and families, nurses are in the ideal position to facilitate birth planning that involves the family in anticipatory guidance and planning. The AAP statements provide guidance and direction for the care of the imperiled newborn. Presently, little direction is offered regarding guiding parents in planning for their newborns when life and or death decisions are questioned. Despite limitations of the current literature, implications suggest that a prenatal discussion between parents and providers of newborn care is recommended when the birth of an imperiled infant is anticipated. A written ACBP for these families would be of value to professional caregiver teams responsible for pre and postnatal care. These include palliative interventions where the goal is to maximize the infant’s comfort and care. Decisions regarding newborn care can be made in conjunction with parents who have been fully informed regarding the fetal diagnosis and the current evidence regarding prognosis. Choices for newborn care offered to parents can be based on what type of care best benefits their newborns. Information must include expectations regarding the risks or ramifications associated with the ACBP.
Table 1: Shared Decision Making in Prenatal Palliative Care A. Exploring the experience of the pregnancy and impact of fetal diagnosis: • Tell me about when you first heard about your baby’s diagnosis. • Have you or any of your friends or family members heard about this fetal diagnosis before? • Do you know anyone whose baby has had this diagnosis? o What was their experience like? B. Facilitating a therapeutic relationship: • Have you named your baby? If not, How would you like us to refer to your baby? • I really want to understand your concerns so we can answer your questions as best we can. • I will share what I know so we can make these decisions together. • We are always available for further discussion. • You do not have to make your plans and decisions alone. • Who supports you now?
Guide for Advance Care Birth Planning Initial Consultation The consultation with parents initiates the discussion of important decision points and treatment options for the mother and infant. These points involve management of the pregnancy until birth, possibility of preterm birth, labor considerations, mode of birth, immediate newborn care, and follow-up neonatal care. This information shared between parents and professionals serves as a foundation for the ACBP. The ensuing discussion with parents follows the principles of a shared decision-making model (Barry & Leviton, 2012). The shared decision-making format is critical when parents and physicians are making value-laden decisions involving the needs of the unborn infant. Parents assume an equal voice in decisions concerning the pregnancy, the infant, what happens at birth, and what happens after birth. The main components of decision making include exploring the experience, facilitating a therapeutic relationship, presenting information, acknowledging uncertainties, recognizing parents’ values and goals, and confirming parents’ interpretation of the discussion. Table 1 offers clinicians a guide for facilitating the initial consultation with parents in a shared decision-making format.
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C. Presenting information and evidence in simple terms: • Often babies with this diagnosis have some other problems that may or may not be helped. • I would like you to see my colleague who an expert in _____, and he/she could tell you more concerning ____ • Based on what we know . . . . • Babies with your baby’s diagnosis are usually born a little past their due dates and may live for a few hours. • This is a lot of information; I will send you a copy of today’s discussion. D. Acknowledging uncertainties in birth outcomes: • Babies with your baby’s diagnosis may live hours, days, or months, we cannot be certain until after he or she is born. • Sometimes babies with this diagnosis are born prematurely and, as their lungs are just too little, they are unable to take in air. • It is hard to say exactly how long a baby with ______ diagnosis will live, but we will make sure he/she is kept comfortable. E. Recognizing parents’ values and goals:
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Table 1: Continued • After your baby is born, we could again look at how she/he is breathing and we could talk again about what care you would like your baby to receive. • We support your decisions for giving your baby all the love and comfort after he/she is born. • I am going to suggest . . . . F. Confirming parents’ interpretation of discussion: • Sometimes all this information is difficult to understand,especially when it is about your baby. • Tell me what you have heard us saying. • Often the words we say are difficult to understand, how do you see things? • If you need more time, we can schedule another appointment . . . .
The perinatal team, including neonatologist, prenatal and palliative care clinicians offer parents support and information within their scope of practice. The neonatologist explains how the fetal diagnosis could affect the infant’s birth and life and what can be expected at birth and after birth. The prenatal care provider addresses any changes concerning the management of the pregnancy, labor, and birth that may be altered by the fetal diagnosis. The palliative care clinician provides information on support services available such as community hospice and may address the question parents are afraid to ask, “Will my baby die?” The response requires honest, simple statements based on the best evidence concerning the fetal diagnosis. The clinician could respond, “We do not know how long your baby will live; it could be minutes, hours, or weeks before (name of baby) dies” or “Because of the diagnosis your baby will not able to breathe and will die soon after birth.”
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The Neonatologist’s Role in Birth Planning The neonatologist is the pediatric specialist best prepared to offer parents information regarding the fetal diagnosis, etiology, and guidance concerning prognosis. Morrow (2000) described the role of the neonatologist as one who, “anticipates the vulnerability of parents and gently guides them in decisions” where uncertainty often prevails (p. 1147). Neonatologists are also well informed regarding immediate and continuing health needs as the infant develops, including how the diagnosis affects the infant’s quality of life. The neonatologist gives parents answers to the following questions based on the best evidence: What is the cause of the problem? Is there more than one cause? Can a prognosis be established even though the evidence supporting the fetal diagnosis is uncertain? Parents consider the risk and benefits associated with interventions regarding delivery room care, for example, intubation, mechanical ventilation, and cardiopulmonary resuscitation (CPR). A conversation around these topics could begin as follows: “From our discussion regarding the diagnosis, we need to plan care for when your baby is born. The baby may have problems with breathing or heart functions. We need to go over the intensity with which you might want us to proceed.” The neonatologist must be conscious of the impact of specific language when providing information. If terms such as life prolonging and life limiting are used, parents may interpret them as meaning their infants will live despite the evidence to the contrary. More useful phrases include mechanical assistance to breathe or CPR will not help the baby’s problems and it could cause the baby more pain.
The professional team asks parents to consider agonizing decisions concerning the life and death of their infants. The crisis of anticipating loss of an infant while simultaneously planning for birth can cause emotional highs and lows for parents during the remaining months of the pregnancy. Time is essential for parents to process complex information and consequential decisions. Often parents will need several conversations with the perinatal and palliative care team concerning such crucial decisions. Parents should be reassured that the perinatal professionals are available for continuing discussion throughout the pregnancy.
Sometimes parents request interventions that are not in the best interest of their infants. The following four-tiered decision guide is helpful for the neonatologist when advising parents: (a) mandatory life sustaining interventions, that is, the physician is not obligated to follow a parent’s request if it would not be in the best interest of the infant; (b) optional care, either comfort care or life-sustaining care, that is, the physician views the risks of further treatment as very high and the benefits of that treatment as uncertain. Parents can either accept or reject further life-sustaining support; (c) investigational that includes all new and experimental treatments as well as some fetal surgeries where the outcome is not fully known. Parents must fully consent to further treatment, and (d) unreasonable, indicating no obligation of the physician to provide further life-sustaining interventions.
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Parents often demand aggressive medical interventions that the physician does not believe can be effective (Ahluwalia, Lees, & Paris, 2008). Munson and Leuthner (2007) recommended that prenatal consultations include prognosis in the context of the fetal diagnosis and consideration of how long the newborn may survive after birth. For example, is it likely that the infant will live minutes, hours, days, or longer? If the infant lives, will he or she be dependent on mechanical intervention for survival? Is perinatal hospice care available if the newborn could live more than a few days? It is impossible to know for sure how long some infants may survive. An educated estimate of survival time may be offered or the clinician may say, “We do not know.” This offers parents options in planning postnatal care such as trial neonatal intensive care stay or home hospice care. The dialogue with the neonatologist helps guide and prepare parents for uncertainties at the time of birth. Such uncertainties are included in the written ACBP. Often decisions are delayed until after the birth for the prenatal diagnosis to be confirmed or to offer parents time to process the information as well as their grief.
The Role of the Prenatal Care Provider (Advanced Practice Nurse/Midwife/Obstetrician/Maternal or Fetal Medicine Consultant) in Birth Planning Decisions regarding how the pregnancy is managed continue with the mother’s primary prenatal care provider who may seek consultation regarding confirmation of the fetal diagnosis with the maternal fetal medicine (MFM) specialist (perinatologist) and the genetic counselor. The prenatal care provider considers if the goals for the pregnancy (mother or baby) are altered because of a change in the expected outcomes of the pregnancy. Are there decisions regarding fetal monitoring, mode of delivery, or maternal history that may influence the labor, birth, and newborn care? Any information that would help the delivery room team offer the highest quality of care in line with the parents’ preference for care is included in the ACBP.
Palliative Care in Birth Planning A palliative care clinician, such as an advanced practice nurse or clinical social worker, assumes the role as a pregnant woman’s care coordinator throughout the remaining months of the pregnancy and neonatal period (Leuthner & Jones, 2007). The goal of the palliative care clinician is
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to build a relationship of consistency and trust with the mother and her family, in which decisions concerning the fetus or newborn are made with support and guidance. The coordinator prepares the written ACBP, including information and recommendations from other team members and the parents’ preferences for care. Parents may include pictures, special rituals at the time of birth, and small mementos such as a lock of hair or hand and footprints. Table 2 offers the clinician a guide to preparing a written birth plan considering specific requests of the parents. Many contextual factors may influence a parents’ decision making and birth planning (Derrington & Dwortez, 2011). Assessment of psychosocial, spiritual, and religious factors as well as the mother’s emotional strength should continue as the pregnancy progresses. Table 3 provides ways to counsel parents and guide decisions and includes questions concerning contextual influences that the palliative care clinician can consider when preparing the birth plan. The clinician recognizes that the responses of parents to grief and the emotions surrounding anticipating the loss of an infant will invariably influence decisions (Bijma et al., 2005; Molewijk, Kleinlugtenbel, & Widdershoven, 2011). With gentle guidance and extreme sensitivity to the needs of the grieving mother-to-be and her family, the palliative care clinician guides and supports the parents in their difficult decisions concerning their infants.
Preparing a Written Plan The written plan is a summary of previous conversations and consultations reflecting the parents’ decisions and the perinatal teams recommendations for care of the newborn at the time of birth and after birth. The final plan provides an unequivocal record of goals for newborn care as determined by the parents and the perinatal teams and specifies personal values and recommendations. Parents review and approve the birth plan and are aware that they can change or revoke any decisions concerning their infants if new information is presented after the birth. Jonsen, Seigler, and Winslade (2002) provided an easily read one-page document known as the Four Topics Method: (a) medical indications, (b) preferences of parents, (c) quality of life, and (d) contextual issues. Although outlined to offer clinicians important aspects of ethical decision making, the 4 Topics Method lends itself to summarizing the written ACBP (see Table 4). Each section is written in
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Table 2: Questions for Mother/Parents in Preparing the Birth Plan
Table 3: Contextual Influences: Assessment 1. Have you or someone close to you experienced the
Identity of the newborn
What is the name of your baby? If not named, how would you like us to refer to your baby?
Family Education
Would you like help in telling your other family members such as your
loss of a baby? 2. Have you ever experienced a time in your life when you felt very sad? 3. If you had a prior pregnancy, was there a time when you felt sad?
children, siblings, or parents about your baby’s problems?
a. Did you share this information with your health care provider?
a. If you have children, have they experienced anyone close to them dying such as a grandparent or a pet? b. What helped with that experience? Labor/Delivery Process
Who would you like to be with you during labor? Would you like anything special to help you relax during labor, e.g., music, a shower, or a massage? Would you like to hear your baby’s heart beat? Would you like your (husband, partner, mother, other loved one) to cut the baby’s cord? Who would you like to be present after the birth of your baby?
Postpartum Actions
Would you like your baby to be baptized or dedicated? Would you like to bathe and dress your baby? Would you like to offer your baby some
b. What helped you most during this time? 4. Does your partner, mother, sister, other immediate family, and/or close friends support you in your decisions about your baby? Your pregnancy? 5. Do your friends and colleagues know that your baby may die? 6. How have you explained your baby’s problems to your other children (if any)? 7. How have you been sleeping since hearing about your baby’s diagnosis? 8. Would you consider yourself a spiritual or religious person/family? a. If so how do your spiritual/religious beliefs help you now? b. Do you have a spiritual teacher/religious book or teachings that help you with your decisions? 9. Are there any specific traditions in your family that you would like us to know? 10. Do you have any logistical concerns such as: a. Financial b. Transportation
expressions of breast milk or formula? Or, would you like your baby to be put to your breast? Would you like to have any special memories of you baby such as the cord clamp, ID band, or lock of hair? Would you like to have photographs taken after birth? If your baby dies, do you want photos then? Planning for Imminent Death
Would you like to speak to someone from hospice? Would you like help in planning a memorial service for your baby? Would you like to have someone from a Funeral Home to talk to?
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a concise manner in simple language that can be understood by parents and serves as a directive to the delivery room/neonatal team. Medical Indications (Section 1) is a brief medical history of the fetal diagnosis including tests and other pediatric consultations. Parent Preferences outlines decisions concerning immediate delivery room care of the newborn. Often the delivery room team is not the same team of physicians and nurses that provided prenatal care, thus a definitive outline regarding whether to proceed with emergency newborn care, transport the newborn to the intensive care setting, or allow the newborn to remain with parents is needed. If the newborn remains with the parents, the goal of care is the comfort of the
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English, N. K., and Hessler, K. L.
infant and support for the parents. The neonatal nurse practitioner or neonatologist who is familiar with palliative care for neonates provides orders that include (a) symptom management for the newborn; (b) nasal/oral suctioning; (c) oxygen via cannula); (d) breast milk or formula if the newborn expresses hunger; (e) respiratory distress; opioids given sublingually; (f) cardiac / respiratory resuscitation status; and (g) family involvement in offering newborn care such as bathing and dressing (British Association of Perinatal Medicine, 2010; Leuthner & Jones, 2007; Williams, Munson, Zupancic, & Kirpaiani, 2008). The section Quality of Life reflects the parent’s definition of quality that involves their view of the pregnancy, the fetal diagnosis, and how it has affected their everyday life. Contextual influences are how the parents receive support from friends and the community and may include any financial concerns of the family.
Table 4: Guide for Using the 4 Topic Method 1. Medical Indications
• Fetal Diagnosis–including confirmation or lack of confirmation for any disorders • A List of all health care providers of prenatal care • Labor Consideration/mode of delivery/fetal monitoring
2. Parental Preference
• Summary of parents’ understanding of fetal diagnosis • Parents decisions regarding neonatal care for the newborn
Advance care plans emphasize the infants’ immediate needs for comfort, warmth, symptom relief, and bonding to family.
Additional information is summarized in the discussion section where parents’ concerns and questions are answered by the perinatal team. The final section outlines the specific Recommendations involving follow up infant and parents care. For example, specific contact information for the photographer, spiritual care provider, and or mortuary service is included. If parents elect to receive palliative care as offered in a community hospice, coordination of care between birth center and community hospice is facilitated by the palliative care clinician, case manager and or social worker. Admission criteria for home hospice or in patient hospice setting include confirmation of pre or postnatal diagnosis. This diagnosis is not amenable to curative efforts or the options that are available would mean extreme suffering for the infant (e.g., renal agenesis, requiring kidney dialysis or severe pulmonary hypoplasia requiring prolonged mechanical ventilation). The prognostic criteria regarding the specific diagnosis are based on the known evidence and certified by a neonatologist or other pediatric professional and indicate that the infant could die within six months. In addition, parents must agree that their infants will receive palliative care (Friebert & Osenga, n.d.). Despite advances in prenatal diagnosis technology, a significant degree of prognostic uncertainty may exist until after the birth of the infant. Often parents are unable to commit to community hospice care in prenatal care planning, thus this remains an open-ended option for infant care and parental support.
• Neonatologist or neonatal nurse practitioner order set • Cardiac or respiratory resuscitation directive 3. Quality of Life
• Summary of the issues important to the parents and immediate family
4. Contextual Influences
• The multiple issues that may impact parent/family decisions ◦ Financial concerns ◦ Social support ◦ Personal and/or religious-/faithbased values ◦ Cultural influences
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Parents and the perinatal palliative care team reach consensus for an approach to care that emphasizes the infant’s immediate needs for comfort, warmth, and symptom relief as well as bonding to parents and family. The final ACBP represents consensus of parents and the perinatal team regarding a compassionate and ethically appropriate plan for the special infant. Table 5 provides an example ACBP with an Illustrated Case.
Communication of the Completed Advance Care Birth Plan On completion of a written plan, a copy of the ACBP is given to the parents and the perinatal
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Prenatal Birth Planning for Families of the Imperiled Newborn
Table 5: Advance Care Birth Plan for: Ana Rose M. Prepared by M. Noble APRN Palliative Care Mother: Jennifer M. Father: Emilo M.
MR: xxxxxxx
DOB 11-16-1976
G3P2
EDD 10-05-07
Siblings: Beth 10y Adam 4y
Medical Indications
Parent Preferences
Fetal Diagnosis: Trisomy 13
Jennifer and Emilo are sadly aware that the diagnosis of
Diagnosis confirmed by: Stodard Genetics Laboratory (07/21/2007) Genetic Counselor: Ann Weise, Prenatal Care
Trisomy 13 means that Ana Rose may die before her arrival or could die soon after birth. They do not want Ana to have prolonged suffering or distress. They agree to offer Ana love and care when she is born and would like
Stephanie Jones MD, Eastside Women’s Care Neonatology: John Harris, MD
to keep her close so Beth and Adam can meet their sister. Dr. Harris recommends that Ana be offered:
Palliative Care: Mary Noble APRN
Oral and nasal suctioning
Labor/Delivery Considerations
Oxygen (humidified) by canula
Jennifer has had two vaginal deliveries with a Hx of
If expresses hunger offer nourishment
short labors. She agrees to NO C-Section if Ana Rose is in distress. External Fetal Monitoring only.
Liquid Morphine Sulfate (SL) for distress DO NOT attempt resuscitation if Ana Rose stops breathing
Quality of Life
Contextual Issues
Jennifer and Emilio have been married for a little over a
Jennifer and Emilio work very long hours. Jennifer’s mother,
year. They both were very excited about this
Corine, lives close and helps with taking care of Beth and
pregnancy. Their life centers on family life, and work.
Adam. Jennifer has shared Ana’s problems with her
Jennifer is a second grade teacher in a local public school and shares she loves her job and teaching. Emilio has only recently found full time work as an auto mechanic. When hearing Ana’s diagnosis they were both
principal and a few friends. She is concerned about how to tell her second grade class. Since this is Emilio’s first child he is grateful for support of friends but is concerned about taking off from work. Emilio and Jennifer like to talk about their problems and have
devastated. They shared they had no idea what to
agreed that they will love Ana “no matter what”! They do
expect.
not attend any specific church or believe in a particular
Beth has shared with her class that her baby sister will die and that all her classmates cried.
religion. They would like to have Ana receive a blessing from the hospital chaplain at her birth.
Note. Jonsen, A. Seigler, W., & Winslade, W. (2002). Four Topics Method. Clinical Ethics: A practical approach to ethical decisions in clinical medicine (5th ed.). New York, NY: McGraw-Hill. Reproduced with permission of The McGraw-Hill Companies.
care providers and placed in the mothers’ medical record. It may be necessary to designate specific neonatal staff to ensure that the on call neonatal team has a copy of the ACBP. Parents are asked to bring the completed ACBP to the Birth Center at the time of delivery or when labor begins. Communication of the ACBP to all staff members who will be caring for the mother and infant is essential.
The ACBP provides a framework to begin the difficult yet fulfilling work of helping parents when they receive a serious fetal diagnosis. The perinatal palliative care advanced practice nurse pays
close attention to the desires of the parents, considers the current evidence base for each imperiled newborn, and offers guidance, emotional support, and education to women and families in making informed decisions after receiving a serious fetal diagnosis. As a result, a special space is created for the newborn as a member of the family. The ACBP provides a process for obstetricians, neonatologists, and palliative care providers to engage in dialogues with the family concerning the fetal diagnosis and in planning care for the infant. Only within a safe and nurturing environment can crucial decisions, parental grief, and personal values can be explored. Thoughtful perinatal advance care planning offers parents and providers a dialogue in which parental autonomy is
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Summary
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English, N. K., and Hessler, K. L.
honored and the special needs of the newborn are addressed with dignity and caring. With this intention, we hope that ACBP will emerge as an exemplary and essential tool reflecting decisions that are ethically appropriate while expressing compassion and concern for the newborn.
Finkelman, A., & Kenner, C. (2009). Teaching IOM: Implications of the Institute of Medicine Report for Nursing Education. Silver Spring, MD: American Nurses Association Publishers. Friebert, S., & Osenga, K. (n.d.). Pediatric palliative care referral criteria. Retrieved from http://www.capc.org/tools-for-palliativecare-programs/clinical-tools/consult-triggers/pediatric-palliativecare-referral-criteria.pdf Jonsen, A., Seigler, W., & Winslade, W. (2002). Clinical bioethics: A
Acknowledgement Funded in part by Colorado Trust Foundation, Pediatric Palliative Initiative, 2001–2004. This article is modeled after a program created by Dr. English (grant coordinator) and Dr. Susan Townsend (co-investigator).
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