8/23/2014 PERINATAL PALLIATIVE CARE BACKGROUND

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1 PERINATAL PALLIATIVE CARE AND BEREAVEMENT : Establishing a Compassionate, Multidisciplinary Program for Families Facing a Life-Limiting Diagnosis Sara L. Chadwick, Stefanie Kasperski, Julie Moldenhauer, Nahla Khalek, Elizabeth Shaughnessy, David Munson, Joanna Cole 1 BACKGROUND According to the Centers for Disease Control and Prevention, it is estimated that 3% of all babies born in the United States will be born with major structural or genetic birth defects Birth defects are the leading cause of infant mortality Birth defects are being diagnosed more often and in more detail prenatally because of advances in fetal imaging and with improved screening Centers dedicated to the diagnosis and treatment of birth defects are becoming more common 2 WHAT ABOUT WOMEN CARRYING PREGNANCIES WITH LIFE-LIMITING CONDITIONS? For these women and their families, options can include Termination of Pregnancy Continuation with comfort care measures at the time of delivery Continuation with full resuscitation and evaluation measures at the time of delivery A trial of intensive intervention with the option to convert to palliative care Adoption following delivery 3 1

2 PERINATAL PALLIATIVE CARE A sub-specialty of palliative care that focuses on the perinatal and neonatal period for women carrying babies with life limiting genetic conditions or birth defects Focuses on the perinatal and neonatal period First described in the literature in 1982, but origins of practice began in the 1970s Growing field which has evolved from primarily pain relief and comfort to other aspects of hospice care 4 THE EVOLUTION OF PERINATAL PALLIATIVE CARE Balaguer et al. BMC Pediatrics. 2012, 12:25 5 PERINATAL PALLIATIVE CARE AT THE CHILDREN S HOSPITAL OF PHILADELPHIA Program initiated within the Center for Fetal Diagnosis and Treatment at the Children s Hospital of Philadelphia Developed in response to a need expressed by families for additional support during and following delivery of babies with severe birth defects or genetic conditions Started informally by a neonatologist and social worker in 2007, the current multidisciplinary program was launched in

3 MULTIDISCIPLINARY PROGRAM Social Work Genetics Midwifery Advanced Practice Nursing Care Coordination Neonatology Child Life Clinical Psychology Maternal Fetal Medicine Perinatal Palliative Care Spiritual Support and Guidance Nursing The Family 7 CFDT STATISTICS Since September 2012, 43 patients have had palliative care consults at our institution 6 patients have yet to deliver 24 babies passed away following delivery 13 babies survived 8 9 3

4 10 PRENATAL PALLIATIVE CARE PROCESS Suggested Stages for Palliative Care Plans: Prior to Delivery Eligibility of the Fetus or Baby for Palliative Care Family Care Psychological support Creating memories Spiritual/personal belief support Social support Communication and Documentation Flexible parallel care planning Transition from prenatal to neonatal care Pre-birth care Transition from active postnatal care to supportive care End of life care Post end of life care Balaguer et al. BMC Pediatrics. 2012, 12:25 11 THE ROLE OF THE GENETIC COUNSELOR IN PALLIATIVE CARE Initially discuss program with the family and refer family for a formal consult per the family s wishes Coordinate prenatal testing and relate it directly to the palliative care plan Serve as a resource for families regarding specific diagnosis information, postnatal specialists, and support groups Coordinate postnatal testing and/or autopsy and follow-up with family with results 12 4

5 CASE 1 Anna, a G2P1, came in for an evaluation following a positive FISH for Trisomy 13 Evaluation identified multiple congenital anomalies consistent with the diagnosis including a complex cardiac defect and a congenital diaphragmatic hernia Family came with the intent to find a hospital that would give their baby a chance 13 Anna and her partner had done extensive research on Trisomy 13, and were aware that although the majority of babies do not survive, there are some that do We aren t going to give up on this baby, we know our baby can be one of the survivors Palliative Care was discussed with the family, and while hesitant, they agreed to a consult Family continued to return to our center for routine prenatal care, as well as visits with our clinical psychologist Slowly were able to come to terms with the severity of the birth defects 14 CHALLENGES TO THIS CASE Helping family to manage expectations Supporting the family through the decision making process and helping them cope with the feeling of failing their child or giving up 15 5

6 CASE 2 Debbie, a G2P0, presented for an evaluation because of a concern for a skeletal dysplasia IVF conceived pregnancy, had one prior miscarriage Parents have 9 other embryos frozen and stored Evaluation confirmed diagnosis of a lethal skeletal dysplasia Parents were devastated Wanted to put a name on it 16 During the course of the pregnancy, additional genetic testing identified a disease causing mutation in the SOX9 gene, consistent with campomelic dysplasia Let them feel more control about what was likely to happen after delivery Helped them feel doctors would fully understand their daughter and what she was experiencing Allowed them to consider possibility for survival, although unlikely Allowed them to know risks for future pregnancies Opted for Palliative care, and plan used this information to help direct delivery decisions 17 Challenges in this case Helping the family work through issues with uncertainty This pregnancy Future pregnancies Very Involved Extended Family Providing support to multiple individuals Making sure parents wishes were heard and not overshadowed by other opinions 18 6

7 CASE 3 Betty, a G1P0, came for a referral because of a complex cardiac malformation Evaluation identified multiple congenital anomalies in addition to the heart defect Family opted for an amniocentesis 46,XX,del(4p16) Consistent with Wolf-Hirschhorn Syndrome Because of the complexity of the heart defect, family opted for palliative care 19 Following their child s delivery, the baby did better than expected, and was transferred to the NICU for additional management Baby girl is now 14 months old, and has typical features of Wolf-Hirschhorn, however is overall doing well Has undergone two heart surgeries Has had eye surgery Being followed by multiple specialists 20 Reflection on this case Palliative Care plan must remain flexible to accommodate for babies that do better than expected All options must be explored with families in terms of what their wishes are Families must be kept up to date with decisions that they are facing 21 7

8 CONCLUSIONS Prenatal Palliative Care continues to be a growing field in fetal diagnosis and treatment Care expands beyond the fetus and mother and to the entire family Is not a single consultation represents a process that starts during pregnancy, continues through delivery, and extends past the neonatal period Is more than just comfort care Helps families feel involved and in control of their delivery Genetic Counselors are an important part of the clinical care team for these families Confirmation of and education about genetic diagnosis is critical in many cases and aids in optimizing care plans and parental expectations Every family s situation is a unique scenario with its own unique challenges 22 ACKNOWLEDGEMENTS Dr. Joanna Cole, Clinical Psychology Dr. Nahla Khalek, MFM, Clinical Genetics Dr. Julie Moldenhauer, MFM, Clinical Genetics Dr. David Munson, Neonatology Elizabeth Shaughnessy, Child Life Specialist Stefanie Kasperski, Genetic Counseling The rest of the Palliative Care Team Our Families 23 REFERENCES Centers for Disease Control and Prevention. Update on Overall Prevalence of Major Birth Defects --- Atlanta, Georgia, Morbidity and Mortality Weekly Report. January 11, 2008: 57(01);1-5 Balaguer et al. The model of Palliative Care in the Perinatal Setting: A Review of the Literature. BMC Pediatrics. 2012: 12;25. North American Fetal Therapy Network

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