Perinatal Hospice: Comprehensive Care for the Family of the Fetus with a Lethal Condition
AAPLOG Statement on Perinatal Hospice
By Byron C. Calhoun, MD, President, AAPLOG
By Peter Napolitano, MD, Member, AAPLOG
Department of Obstetrics and Gynecology, Madigan Army Medical Center, Tacoma, Wash.
By Nathan J. Hoeldtke, MD, Military District Board Member, AAPLOG
Department of Obstetrics and Gynecology, Tripler Army Medical Center, Honolulu
Many congenital anomalies are currently diagnosed in the antenatal period and congenital anomalies now account for the majority of causes of death in the first year of life in the United States.[Centers for Disease Control. 1994. Infant Mortality-United States, 1992. MMWR 905-909.] Prenatal diagnostic capabilities continue to rapidly expand, but unfortunately the ability to adequately treat many of the diagnosed conditions has not kept pace. Likewise, thinking regarding care for families of fetuses that will die in utero or live only a short time after birth has also lagged. We believe that the family experience with these pregnancies is somewhat analogous to that of families with a terminally ill child and that their management is well served with a coherent end-of-life approach. We have proposed perinatal hospice as a comprehensive structured approach for the care of these families.[Hoeldtke, NJ, Calhoun, BC. Perinatal hospice. Am J Obstet Gynecol,2001:185:525-529.]
Modern hospice care for adults originated in the 1960s in response to a realization that end of life issues for terminally ill patients were being inadequately addressed with traditional approaches.[Saunders, C. The last stages of life. AmerJNurs1965;65:70-75. Saunders, C. Terminal patient care.Geriatrics1966;21:70-74.] This philosophy of care rapidly expanded over the ensuing three decades, including application to the management of families with terminally ill children.[Saunders, C. The management of fatal illness in childhood. Pro Royal Soc Med1969; 62: 550-553.]
A neonatal hospice construct of care has also been described and implemented, [Whitfield 3M, Siegel RE, Glicken AD, Harmnon, RI, Powers LK, Goldson EL. The application of hospice concepts to neonatal care.Am J Dis Child1982;136:421-424.] but this alone is no longer sufficient for the needs of families confronted with the now common scenario of prenatal diagnosis of a lethal fetal condition. In this setting the process of providing care for a family expecting the death of their youngest member no longer begins at birth but at the time of diagnosis.
Therefore, we have extended the concept of hospice to include comprehensive support from the time of diagnosis through the birth and death of the infant, and into the postpartum period. The availability of perinatal hospice provides a viable management alternative to those families for whom elective pregnancy termination is not a desirable option.
After prenatal diagnosis of a lethal fetal condition parents are presented with the option of a multi-disciplinary program of ongoing supportive care until the time of spontaneous labor or until delivery is required for obstetrical indications. For those choosing the option of perinatal hospice, the burden of effort in their care lay in the antepartum counseling and preparation.
Each family's status and care plan are reviewed at regularly scheduled perinatal planning conferences. These multidisciplinary conferences include the maternal-fetal medicine service, anesthesia service, neonatology service, resident obstetrical team, labor and delivery nursing service, antepartum/postpartum nursing service, neonatal nursing service, social service, and chaplain service.
Patients are occasionally invited to meet together with a portion of this multidisciplinary team, depending on their particular circumstances. Careful attention is paid to insure that the care remained patient centered with easy accessibility for the patients and their families to the various members of this care team.
Extensive support is also provided in labor through encouragement by nursing staff trained in grief management. Pain relief was administered by the anesthesia service. Labor management is conducted as other labors with the exception of continuous fetal heart rate monitoring in conditions where an abnormal fetal heart pattern is expected.
Method of delivery is based on obstetrical indications, except in rare instances where maternal request for cesarean delivery is made, usually out of a desire to see their infant alive before his or her death. In these cases there is extensive counseling to ensure that the patients understood the additional maternal risks entailed in the procedure, the inability of the surgery to change the ultimate prognosis for the neonate, and our recommendation for an attempted vaginal delivery. If patients stated an understanding of these facts and persisted in their desire for cesarean delivery this is generally granted. At birth, the attending neonatologist evaluated the infant, confirm the diagnosis, and placed the infant with the parents so they could share in their baby's life and death.
The parents are allowed to stay in the delivery suite with the child as long as they wished. We encourage dressing the baby, taking photographs of the baby and holding the baby by all family members, including children when appropriate. Non-anomalous features of the infant are emphasized to the parents. Descriptions of features such as cute hands and soft skin gave the parents a positive focus and remembrance of their child. Each family receives a special remembrance decorative gift box as a keepsake and repository for birth items.
Comfort measures are emphasized to the family, with staff assisting in this care as needed. The infants are kept warm and cuddled and some even fed. Infants surviving for longer periods are occasionally cared for in the nursery during the postpartum period, if the parents desire. Chaplain and social services provided spiritual and emotional support during this time as needed. Care is continued into the post-partum period by those providing grief support and contact from various members of the hospice team, with the level and timing of involvement dictated by the desires of the parents.
We recently evaluated our current experience with providing such a program of multidisciplinary care at Madigan Army Medical Center, Tacoma, Wash., from July 1995 to January 2004 and Travis Air Force Medical Center, Sacramento, Calif., from July 1996 to July 1999. There were 31 patients whose pregnancies were complicated by a lethal fetal condition during these time periods. We evaluated how many choose the perinatal hospice method of care; how many of these suffered an intrauterine fetal demise; how many had a live birth; how many had a preterm birth; mode of delivery; length of survival of the neonate in the event of a live birth; and maternal morbidity, including infection, operative complications, need for blood product transfusion and postpartum readmission.
Our population consisted of 31 patients with a clearly delineated lethal fetal anomaly. Twenty-seven (87%) chose to participate in the perinatal hospice program. The four pregnancy terminations consisted of fetuses with trisomy 13, sirenomelia, lethal skeletal dysplasia, and monosomy 13.
In the remaining patients, 10/27 (37%) had an intrauterine fetal demise rate and 17/27(63%) delivered live born infants. All who experienced an intrauterine fetal demise had a vaginal delivery. Of the live born infants, there were 14 vaginal deliveries, five were preterm and nine were at term. Obstetric indication or maternal request resulted in cesarean delivery for 4/27 (15%), three preterm and one term, all resulting in delivery of live born infants. These cesarean sections were performed for a 36 week fetus with thanatophoric dysplasia and macrocrania with a biparietal diameter of >11 cm; a 36 week fetus with a large, posterior encephalocele; a 25 week fetus cloacal dysgenesis with anhydramnios and placenta previa with hemorrhage; and a 39 week fetus with a posterior encephalocele and severe skeletal dysplasia. All live born infants died within 20 minutes to two months.
There were no maternal infections, operative complications, blood product transfusions or postpartum admissions.
Perinatal hospice care has now been offered on our service for a number of years. We have found that a large number of our patients diagnosed to be carrying a fetus with a lethal congenital disorder choose to continue their pregnancies in this environment of care (87%). The majority of these patients delivered a live-born infant (63%), although a significant minority suffered an intrauterine fetal demise (37%). The care of this group of patients was accomplished without any notable maternal morbidity.
Typically, when a lethal congenital condition is prenatally diagnosed options presented to the parents include termination of the pregnancy versus continued pregnancy with routine maternal care and non-intervention for the fetus and neonate at the time of labor and delivery. A bare presentation of these options may leave parents with the perceived choice of futilely watching their infant die, which they may also interpret as increased suffering for their child, versus actively doing something to end this new and sudden emotionally wrenching dilemma. Although this counseling is presented with the intention of being non-directive, it may be viewed by parents as a tacit recommendation for early termination of the pregnancy. Parental decisions may also be strongly colored by the common fear of abandonment of themselves and their unborn child and the anticipation of pain and suffering that both may endure.
Nevertheless, some studies have suggested that up to 20% of parents with a fetus with known severe chromosomal or anatomic anomalies choose to continue their pregnancy.[Schechtman KG, Gray DL, Baty 3D, Rothman SM. Decision-making for termination of pregnancies with fetal anomalies: analysis of 53,000 pregnancies. Obstet Gynecol2004; 99:216-222.] In the United States 0.2% to 0.3% (6,000 to 10,000) of all live births each year have defects severe enough to cause neonatal death,[Centers for Disease Control. 1998. Trends in Infant Mortality Attributable to Birth Defects — United States, 1980-199S. MMWR773-778.] and there are still others with conditions eventually resulting in intrauterine demise. Thus, there are a significant number of families who are candidates for perinatal hospice, a compassionate, supportive, and desired management alternative. In our experience, it appears that if such an approach is actively available and explicitly offered to patients that a much larger proportion than 20% may accept such care and continue their pregnancies, at least for those with a lethal fetal anomaly.
A few of our patients had diagnoses made later in pregnancy, secondary to late entry to care or later referral for evaluation. These patients are conceivably more likely to continue their pregnancy, given the difficulties that may be encountered in obtaining late pregnancy terminations. This in turn may make our uptake rate for perinatal hospice slightly higher than would have been the case if the study population was limited to those with prenatal diagnosis before 20 to 22 weeks of gestation. However, even among our patients with diagnosis before 22 weeks, 19/23 (83%) choose perinatal hospice for their pregnancy management. Further, in many settings these conditions may often not be diagnosed until later in pregnancy, and therefore any benefits of perinatal hospice care that may accrue to those patients with earlier diagnoses can also be helpful for these patients.
In conclusion, it appears that when parents are given loving support, freedom from the fear of abandonment and careful counsel regarding clinical expectations in the setting of a lethal fetal condition, they frequently choose the option of perinatal hospice care for the management of their pregnancy. This can be safely accomplished with current methods of obstetrical care. These parents are thus allowed to fully experience the birth of their child and the bonding that occurs during the antepartum and immediate postpartum period. This bonding helps provide a firm foundation for obtaining closure with the death of their child. They may rest secure in the knowledge that they shared in their baby's life, however brief, and treated their child with the same dignity afforded other terminally ill individuals under the best of circumstances.
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Other Related Reading
Hoeldtke NJ, Calhoun BC. Perinatal hospice. Am J Obstet Gynecol 2001; 185:525-29.
Reitman JS, Calhoun BC, Hoeldtke NJ. Perinatal Hospice: A response to early termination for severe congenital anomalies. In TJ Demy, GP Stewart, eds., Genetics and Reproductive Technology: A Christian Response (Grand Rapids, MI: Kregel Books, 1999), pp. 197-211.
Calhoun BC, Hoeldtke NJ. The perinatal hospice. J Biblical Ethics in Med 1996;9(l): 18-20.
Calhoun BC, Hoeldtke NJ, Hinson RM, Judge KM. Perinatal Hospice: should all centers have this service? Neonatal Network. 1997;16(6): 101-102.
Calhoun BC, Reitman JS, Hoeldtke NJ. Perinatal hospice: a response to partial birth abortion for infants with congenital defects. Issues in Law and Medicine 1997; 13(2): 125-143.
Calhoun BC, Hoeldtke NJ. The perinatal hospice: ploughing the field of natal sorrow. Care in Dying. Fall, 1999.
Calhoun BC, Hoeldtke NJ. The perinatal hospice: ploughing the field of natal sorrow. Frontiers in Fetal Health: A Global Perspective. 2000; 1(2): 16-33.
Reprinted in its entirety as submitted.