Perinatal Hospice: Babies are not supposed to die Lyle Workman, MD 1 and Cara Geary, MD, Ph. D 2 1 Pediatric Resident - PGY 3, 2 Associate Professor, Department of Pediatrics, Division of Neonatology, University of Texas Medical Branch, Galveston, TX Abstract Excerpts This project entailed reviewing Perinatal Hospice from multiple perspectives: family, care-provider, historical, and current practices. The review was performed for an invited chapter on Perinatal Hospice in an upcoming book titled, “Awake at the Bedside: Contemplative Approaches to Palliative and End-of-Life Care. ” Due to my personal experience in this area, I was asked to co-author the chapter, which later becoming my scholarly activity. Writing this chapter faced unique challenges both in the writing style and in balancing emotions with facts. In order to create structure in detailing the nine month process, a poem titled “The Guest House” by Rumi was used. First person was used primarily in order to personalize the experience. Third person was only used in detailing facts about perinatal hospice. Submission of a 7, 000 word chapter occurred in July 2013. The review process was just started as the deadline was extended for other chapter authors. Publication is expected in Fall 2014. Most parents who are offered Perinatal Hospice versus termination will choose to continue their pregnancy. In regard to my participation in Perinatal Hospice, my experience allowed me to effectively heal from my loss, which now allows me to participate in Perinatal Hospice and offer assistance to other families. Writing this chapter has allowed me to reflect back on my experience and express the importance of this program for families in similar situations. Shock and awe calls on the phone “Don’t worry about call, you are not taking call for the rest of your rotation. I also want to talk to you about a program we have started here for expectant parents dealing with a bad diagnosis. The program is a Perinatal Hospice program, and we will help you with all the turmoil you must be feeling. ” The conversation went on for awhile. . I really don’t remember any details…. I just kept saying “okay. ” I remember afterwards wishing I had a recorder and could replay this amazing conversation. I later commented that God had just reached through the phone and pulled me from despair. Background § More than 170 perinatal hospice programs exist in the US and they address physical, medical, psychosocial, emotional, and spiritual issues parents are struggling with § Perinatal Hospice groups support women dealing with miscarriages, in-utero losses, neonates born before reaching a viable age, neonatal losses, and families dealing with a continuation of pregnancy with a lethal diagnosis § Much of Perinatal Hospice is directed towards parents whose fetus is diagnosed with a lethal disorder as early as 18 weeks of gestation and supports them through and beyond their pregnancy § Some Definitions: § Miscarriage: loss <20 wks gestation § incidence ~20% of all pregnancies § Late fetal death or stillbirth: loss >20 wks gestation § incidence ~0. 7% of all pregnancies § Neonatal loss: death in the first 28 days of life § incidence is 0. 4% § Infant death: death between 28 days and 1 yr of age § incidence is 0. 2% § Cumulative incidence of death >20 weeks gestation is 1. 3% § Number of deaths in first year of life exceeds the number of deaths in any decade of life thereafter § Leading cause of death in first year of life was prematurity (16. 8%) and congenital anomalies (20. 2%) in 2010 Methods § Dr. Geary invited to write a chapter on Perinatal Hospice for the future book: “Awake at the Bedside: Contemplative Approaches to Palliative and End-of-Life Care. ” § Editors asked authors to keep their chapters from a patient perspective, thus Dr. Geary asked Dr. Workman to co-author § Writing chapter: challenges § Staying personal § Relaying facts § Having reader experience the emotional edge families deal with § Relaying care-provider perspective without losing family thread § Staying under the required word limit § Learning that the submission due date is relatively theoretical and that delays in publication are the norm – publication is expected this coming year Fresh air arrives at the door The following day, I ventured to meet Dr. Geary…I went into the meeting simply because this faculty member told me to come, and because Jo Anna and I had no where else to turn. I was supposed to be the strong one in the family, the supporter and caretaker of my wife and my arriving daughter. I was at a loss. The only options we had were talking to a Geneticist or termination, which seemed like a joke. So, there I sat in her office. …The point that I do remember was when she seemed to find me right where I was…lost and looking for some help. She said, “We will be there for you every step of the way if you want us to. ” Want us to? How about need you to! It was like a thousand bricks had been lifted off of me. For the first time in five days, I felt like I could breathe. I felt like I had someone I could turn to. Some relief and some reality arrive at the door …Our next struggle was the diagnosis. What exactly does it mean to have Alobar Holoprosencephaly? We were provided as much detail as we wished on the diagnosis and its prognosis. This was more than I could ask for…So, there we sat taking in as much as we could about what Abby had. Of course, this also meant slowly, piece by piece, taking in bites of reality. Learning more about Abby’s diagnosis meant finding out more about her prognosis, that Abby would never be “normal, ” and that death was something we would have to face. It was painful but necessary for us to make an educated decision about her future. How could others make this decision alone and without the help of a team like this? It is impossible for me to imagine. I remember leaving that day with so many questions answered, but just as many new questions created. …. I also remember entering that room as total strangers and leaving feeling as if I had found three new friends… Joy visits again We are bringing our baby home! She gets to come home to her nursery! Maybe everything will be okay. Maybe she will live forever. It is hard to tell, but we must do everything we have ever imagined with our baby. How about we stop at the beach? Every child needs to visit the beach. Then, if she doesn’t live forever, we can at least say we visited the beach. How about a stroll in the neighborhood? ……. . Let’s invite all our family over. Everyone should get a chance to meet our baby. She deserves to be held and loved by all. Discussion § Statistics indicate that there is a significant number of families that would benefit for Perinatal Hospice services (cumulative incidence of death is 1. 3%) § Despite the need, society often does not recognize these losses or are not prepared to address the needs of those involved. § When parents are given the option of Perinatal Hospice versus termination, 85% of them will choose to continue their pregnancy § Perinatal Hospice is effective in supporting families experiencing miscarriages, in-utero losses, neonates born before reaching a viable age, neonatal losses, and families dealing within continuation of pregnancy with a lethal diagnosis § Much of the effort of Perinatal Hospice is directed to the continuation of pregnancy with a lethal diagnosis § Lethal diagnosis may include complex or multiple congenital anomalies (often due to chromosomal disorders), holoprosencephaly, anencephaly, hydranencephaly, severe hydrocephalus, complex severe meningomyelocele, large encephaloceles, severe kidney disease with oligohydramnios, renal agenesis, thanatophoric dwarfism, lethal osteogenesis imperfecta, spinal muscular atrophy, ectopia cordis, acardia, Pentalogy of Cantrell, inoperable cardiac conditions, and some conjoined twins § Recent legal mandates are increasing the awareness of Perinatal Hospice options: § Women’s Right to Know Act in Minnesota (2003) § House Bill 2036 in Arizona (2013) Writing Experience § Use of poem as guide § Allowed for structure to nine month process § Allowed connection to emotion of process § Unsuccessful attempt to shift to third person perspective § To provide Perinatal Hospice facts § To provide Perinatal Hospice Team (care provider) perspective § Decision to prioritize first person to create a very personalized perspective § Theorized what ‘care providers must be thinking’ § Guidance from entire team and literature for this perspective The Guest House This being human is a guest house. Every morning a new arrival. A joy, a depression, a meanness, some momentary awareness comes as an unexpected visitor. Welcome and entertain them all! Even if they are a crowd of sorrows, who violently sweep your house empty of its furniture, still, treat each guest honorably. He may be clearing you out for some new delight. The dark thought, the shame, the malice. meet them at the door laughing and invite them in. Be grateful for whatever comes. because each has been sent as a guide from beyond. -- Jelaluddin Rumi, translation by Coleman Barks Summary § Receiving the diagnosis of holoprosencephaly at 18 weeks gestation was excruciatingly difficult to handle § Alone, afraid, and confused were just some of our feelings § Perinatal Hospice helped us to process our emotions, experience pregnancy with joy, and develop a birth plan that would be appropriate for both our needs and our baby’s needs § Perinatal Hospice has also continued to offer support in the time after the death of our baby References § Calhoun BC, Napolitano P, Terry M, Bussey C, Hoeldtke NJ. “Perinatal Hospice. Comprehensive care for the family of the fetus with a lethal condition. ” The Journal of Reproductive Medicine. 2003; 48(5): 343 -8. § House Bill 2036. State of Arizona. House of Representatives. Fiftieth Legislature. Second Regular Session. (2012). § Katz, Vern. Comprehensive Gynecology. 6 th ed. Gretchen Lentz, MD. Philadelphia: Mosby Inc. , 2012. § Kochanek KD, Kirmeyer SE, Martin JA, Strobino DM, Guyer B. “Annual summary of vital statistics: 2009. ” Pediatrics. 2012 Feb; 129(2): 338 -48. § Kuebelbeck, A. Perinatal Hospice: A Gift of Time. 2013. Web. 29 June 2013. § Mac. Dorman MF, Hoyert DL, Mathews TJ. “Recent declines in infant mortality in the United States, 2005– 2011. ” NCHS data brief, no 120. Hyattsville, MD: National Center for Health Statistics. 2013. § Women’s Right to Know Act. State of Minnesota. 83 rd Legislature. Regular Session. (2003). Texas Pediatric Society Electronic Poster Contest
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