Clinician’s Corner
Case 1: A primary care provider enhances family support in perinatal palliative care
A
healthy 42-year-old G10 P7 mother with seven healthy children with the same partner conceived naturally while taking prenatal folic acid supplementation. She was referred to a perinatal assessment team at a tertiary hospital following a 21-week ultrasound showing extensive lumbosacral meningomyelocele and Chiari II malformation. Serial ultrasounds documented progressive polyhydramnios, massive ventriculomegaly, poorly developed mantle, 120° kyphoscoliosis and club feet. The referring family physician and obstetrics, genetics, neonatology, neurosurgery and palliative care were involved throughout the pregnancy. The consultants’ impressions of profound neurological damage led to counselling about options for termination of pregnancy, comfort measures alone, or resuscitative care and re-evaluation after delivery. The parents hoped for a live-born infant and time to hold her while alive. Following extensive discussions with their family physician, they chose a trial of resuscitative care with immediate neonatology assessment. A scheduled Caesarean section under spinal anesthetic, preceded by ultrasound-guided ventriculocentesis to facilitate delivery, was performed at 37 weeks’ gestation. Resuscitation included intubation and administration of intravenous fluid. The neonatologist confirmed a large open lumbosacral meningomyelocele. The baby became increasingly hypoxic despite attempts to optimize ventilation and, in discussion with the parents, the neonatologist discontinued mechanical ventilation while the baby was held in her father’s arms. Death occurred at 2 h of age.
Correspondence (Case 1): Dr Sharron Spicer, Alberta Children’s Hospital, Pediatrics, 2888 Shaganappi Trail Northwest, Calgary, Alberta T3B 6A8. Telephone 403-955-5465, e-mail [email protected] Case 1 accepted for publication December 2, 2014.
Paediatr Child Health Vol 20 No 3 April 2015
©2015 Pulsus Group Inc. All rights reserved
149
Clinician’s Corner
case 1 discussion
Advances in fetal imaging and genetic testing have improved the ability to diagnose serious congenital anomalies before birth, creating a window of opportunity for families to consider options for the remainder of the pregnancy, birth, life and potential death of their baby in ways that are consistent with their values based on the likely outcome. Paediatric palliative care is an approach that offers support to families when there is a likely possibility of death in childhood (1). Specialized perinatal palliative care teams are increasingly involved in the care of unborn and newborn infants; recommendations have been developed to meet the needs of patients, families and staff to ensure a pain-free, dignified, family-centred death for infants receiving end-of-life care (2). As perinatal medical care becomes more specialized, expectant mothers and families meet multiple care providers for investigations, monitoring and planning. Feedback given by this family and others indicates that care is fragmented in time, geographical location and access by specialists to real-time information. Recommendations and decisions regarding treatment choices, such as continuation of the pregnancy and delivery plans, may not be accurately or fully communicated to other providers. We suggest that a primary care provider may serve a useful role to help the mother and family navigate the health system, coordinate specialist appointments, ensure creation of a coordinated written birth plan, provide additional psychosocial support, and ensure adequate postpartum and bereavement follow-up. In the case presented here, the family physician who provided initial prenatal care referred the mother to a specialized perinatal assessment program. Thereafter, he continued to receive consultant reports and was invited to multidisciplinary meetings. He continued to see the mother regularly and provided clarity about consultant recommendations. He attended the delivery and served a valuable role in providing the mother updates for the short time she was in the recovery room separated from her baby. He provided the mother’s postpartum care and has addressed bereavement needs for the entire family, including siblings ranging from toddlers to teens. A perinatal palliative care working group at this centre had already been considering how to integrate a system navigator into the complex care of women carrying babies with serious fetal anomalies. Based on the success of this family’s interactions with their own family physician, there was support for ongoing involvement by primary care providers. Recognizing that not all
150
mothers have such a rapport with a family physician, nor do all family physicians have the availability or interest to provide this intensive perinatal care, a model is being developed to invite interested family physicians and midwives to participate in the prenatal and postpartum care of these women as care coordinators, to provide additional psychosocial and family support, and ensure robust postpartum care.
Clinical Pearls • Perinatal palliative care services provide support to families facing a short life for their unborn baby with serious congenital anomalies. Personalized care plans can be made according to families’ values and the expected outcomes. • To ensure consistent care, a primary care provider is in a unique position to assume the roles of system navigation, family support, bereavement facilitation and postpartum care. Acknowledgements: The authors thank the family for graciously sharing their story and Dr Thomas Bouchard for his dedication as a family physician.
Ciara Chamberlain BSc MSc MD Department of Pediatrics, University of Calgary Alberta Children’s Hospital Sharron Spicer MD FRCPC Department of Pediatrics, University of Calgary; Alberta Children’s Hospital Children’s Hospice and Palliative Care Service Kathryn daSilva Curiel RN MN Alberta Children’s Hospital Children’s Hospice and Palliative Care Service Calgary, Alberta References
1. Spicer S, MacDonald ME, Davies D, Vadeboncoeur C, Siden HB. Lexicon of Terms in Pediatric Palliative Care. PedPalASCNET, 2014. (Accessed July 31, 2014). 2. Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002;22:184-95.
Paediatr Child Health Vol 20 No 3 April 2015
Case 1: A primary care provider enhances family support in perinatal palliative care
A
healthy 42-year-old G10 P7 mother with seven healthy children with the same partner conceived naturally while taking prenatal folic acid supplementation. She was referred to a perinatal assessment team at a tertiary hospital following a 21-week ultrasound showing extensive lumbosacral meningomyelocele and Chiari II malformation. Serial ultrasounds documented progressive polyhydramnios, massive ventriculomegaly, poorly developed mantle, 120° kyphoscoliosis and club feet. The referring family physician and obstetrics, genetics, neonatology, neurosurgery and palliative care were involved throughout the pregnancy. The consultants’ impressions of profound neurological damage led to counselling about options for termination of pregnancy, comfort measures alone, or resuscitative care and re-evaluation after delivery. The parents hoped for a live-born infant and time to hold her while alive. Following extensive discussions with their family physician, they chose a trial of resuscitative care with immediate neonatology assessment. A scheduled Caesarean section under spinal anesthetic, preceded by ultrasound-guided ventriculocentesis to facilitate delivery, was performed at 37 weeks’ gestation. Resuscitation included intubation and administration of intravenous fluid. The neonatologist confirmed a large open lumbosacral meningomyelocele. The baby became increasingly hypoxic despite attempts to optimize ventilation and, in discussion with the parents, the neonatologist discontinued mechanical ventilation while the baby was held in her father’s arms. Death occurred at 2 h of age.
Correspondence (Case 1): Dr Sharron Spicer, Alberta Children’s Hospital, Pediatrics, 2888 Shaganappi Trail Northwest, Calgary, Alberta T3B 6A8. Telephone 403-955-5465, e-mail [email protected] Case 1 accepted for publication December 2, 2014.
Paediatr Child Health Vol 20 No 3 April 2015
©2015 Pulsus Group Inc. All rights reserved
149
Clinician’s Corner
case 1 discussion
Advances in fetal imaging and genetic testing have improved the ability to diagnose serious congenital anomalies before birth, creating a window of opportunity for families to consider options for the remainder of the pregnancy, birth, life and potential death of their baby in ways that are consistent with their values based on the likely outcome. Paediatric palliative care is an approach that offers support to families when there is a likely possibility of death in childhood (1). Specialized perinatal palliative care teams are increasingly involved in the care of unborn and newborn infants; recommendations have been developed to meet the needs of patients, families and staff to ensure a pain-free, dignified, family-centred death for infants receiving end-of-life care (2). As perinatal medical care becomes more specialized, expectant mothers and families meet multiple care providers for investigations, monitoring and planning. Feedback given by this family and others indicates that care is fragmented in time, geographical location and access by specialists to real-time information. Recommendations and decisions regarding treatment choices, such as continuation of the pregnancy and delivery plans, may not be accurately or fully communicated to other providers. We suggest that a primary care provider may serve a useful role to help the mother and family navigate the health system, coordinate specialist appointments, ensure creation of a coordinated written birth plan, provide additional psychosocial support, and ensure adequate postpartum and bereavement follow-up. In the case presented here, the family physician who provided initial prenatal care referred the mother to a specialized perinatal assessment program. Thereafter, he continued to receive consultant reports and was invited to multidisciplinary meetings. He continued to see the mother regularly and provided clarity about consultant recommendations. He attended the delivery and served a valuable role in providing the mother updates for the short time she was in the recovery room separated from her baby. He provided the mother’s postpartum care and has addressed bereavement needs for the entire family, including siblings ranging from toddlers to teens. A perinatal palliative care working group at this centre had already been considering how to integrate a system navigator into the complex care of women carrying babies with serious fetal anomalies. Based on the success of this family’s interactions with their own family physician, there was support for ongoing involvement by primary care providers. Recognizing that not all
150
mothers have such a rapport with a family physician, nor do all family physicians have the availability or interest to provide this intensive perinatal care, a model is being developed to invite interested family physicians and midwives to participate in the prenatal and postpartum care of these women as care coordinators, to provide additional psychosocial and family support, and ensure robust postpartum care.
Clinical Pearls • Perinatal palliative care services provide support to families facing a short life for their unborn baby with serious congenital anomalies. Personalized care plans can be made according to families’ values and the expected outcomes. • To ensure consistent care, a primary care provider is in a unique position to assume the roles of system navigation, family support, bereavement facilitation and postpartum care. Acknowledgements: The authors thank the family for graciously sharing their story and Dr Thomas Bouchard for his dedication as a family physician.
Ciara Chamberlain BSc MSc MD Department of Pediatrics, University of Calgary Alberta Children’s Hospital Sharron Spicer MD FRCPC Department of Pediatrics, University of Calgary; Alberta Children’s Hospital Children’s Hospice and Palliative Care Service Kathryn daSilva Curiel RN MN Alberta Children’s Hospital Children’s Hospice and Palliative Care Service Calgary, Alberta References
1. Spicer S, MacDonald ME, Davies D, Vadeboncoeur C, Siden HB. Lexicon of Terms in Pediatric Palliative Care. PedPalASCNET, 2014. (Accessed July 31, 2014). 2. Catlin A, Carter B. Creation of a neonatal end-of-life palliative care protocol. J Perinatol 2002;22:184-95.
Paediatr Child Health Vol 20 No 3 April 2015
