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Denise Ct-Arsenault, PhD, RNC, FNAP University of North Carolina at Greensboro Erin M. Denney-Koelsch, MD University of Rochester Medical Center

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Background Prenatal testing is now routinely done Ultrasounds done at 12-20 weeks 2% of pregnancies have life-threatening fetal diagnosis 20-85% of women choose to continue pregnancy (wide range in studies). Perinatal palliative care services are scarce Counseling re options is done by Obstetrics, Neonatology, Genetic Counselors Long-term follow up is not common

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Previous Research Most existing studies are retrospective Perinatal loss often leads to emotional distress, intense grief, and PTSD British studies: parents need time to make a decision; grieving may be easier if they continue pregnancy Prospective US study: parents often find personal growth under these circumstances (Black & Sandelowski, 2010) Prospective studies are limited to specific diagnosis with varying prognosis

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Purpose of the Study To explore the parental experience of continuing pregnancy with a known lethal fetal diagnosis To learn the parental perspective of perinatal palliative care services when they were offered or received To demonstrate the feasibility and acceptability of research participation of couples

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Study Methods Qualitative descriptive pilot study Recruit women, and their willing partners Through Palliative care consultants with Prenatal PC consultation requested by obstetrics. Inclusion criteria: Pregnancy with fetal diagnosis and prognosis of < 2 mo. Family has decided to continue pregnancy Being seen by Pall Care was not a requirement for inclusion. Semi-structured interviews One interview, during pregnancy or after birth

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Data Collection & Analysis: Interviews Informed consent obtained Audio-recorded Encourage personal story-telling Qualitative analysis Comprehending, synthesizing, theorizing (Morse & Field, 1995) Each researcher independently pulls out important themes and quotes

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Interview Guide Semi-structured Question Examples: Please tell me about this pregnancy, from the beginning. How have other people reacted to the babys diagnosis? What could the doctors and nurses provide you right now that would be helpful? What has it been like to talk to the palliative care team?

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Sample 5 families interviewed Prenatally: 2 couples, 2 mothers Postnatally: 1 couple Demographics All were Caucasian except one mother mixed Asian All had at least HS education, half had graduate education 3 were first pregnancies 1 had history of 1 termination and one miscarriage 1 had history of 1 miscarriage and 1 living child Fetal diagnoses: trisomy 18, renal agenesis, hypoplastic left heart

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Results: Overall Impression Parents, in spite of their grief, demonstrated love for their baby and determination to find meaning in and honor their babys life.

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Dimensions & Themes Personal Pregnancy Experience Interactions with Others Grieving Multiple Losses Arrested Parenting My Baby is a Person Fragmented Health Care Disconnected Family and Friends Utterly Alone

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Grieving Multiple Losses Multiple losses of: Perfect baby Normal pregnancy experiences Future parenting Grief reactions: Disbelief Sadness Denial Anger Guilt

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Grieving Multiple Losses I guess Ive been getting depressed lately just thinking about it because I can feel him and everything and I can see him in the pictures. I dont get to plan a nursery, I get to plan a funeral. Were going to have to spend over half of our pregnancy knowing that this baby isnt going to live once hes born. ..kept asking am I doing something wrong? Am I not drinking enough water? Is this my fault? This has got to be because of something that I did.

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Grieving Multiple Losses We were really hopeful that there was a mistake. We were like maybe itll go away by next timeI was really confident that there wasnt really going to be any problems. I kept thinking they put me on bedrest..and everything was going to be fine. Ill just randomly get mad because of the situation. I know people mean well when they say to relax and stay calm. I just get mad at them cause I dont see how you can be relaxed and be calm in this situation.

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Arrested Parenting Normal pregnancy is a process of becoming a parent for the child A lethal diagnosis halts this process Father had been decorating the nursery. Mother said, It was really, really pretty. But then, when we found out, we just stopped. So the room is like, the panelings done around like boom-boom, and then juststopped. We just stopped. And we dont go in the room.

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Arrested Parenting Another dad said, In some ways I wanted it to be over, but we know what that would mean. My thing was to put up walls. Not being the one to carry the baby Funeral planning was very important to one family. Weve given him everything we could, as parents. Everything that a mom gets to do, I cant do. I get to plan a funeral. Its all I can give him.

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My Baby is a Person Importance of their baby being thought of and treated as a real person Did not want people to pretend he/she didnt exist Wanted to find ways to legitimize and honor the babys life. Not all pregnancies were desired but all babies became wanted

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My Baby is a Person I really do want a memory of my baby. Regardless if hes alive, or you knowhes still my baby. Treat us normally. This is our baby and we want to enjoy the pregnancy and our time with her, and enjoy what we have. Dont act as if she isnt there.

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My Baby is a Person Importance of a name. All the families had named their child. One family struggled with not knowing the gender due to difficulty with the ultrasound views. Its a person. Important to have a name. Hes part of our family Dad said, Legitimize his life.

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Dimensions & Themes Personal Pregnancy Experience Interactions with Others Grieving Multiple Losses Arrested Parenting My Baby is a Person Fragmented Health Care Disconnected Family and Friends Utterly Alone

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Fragmented Interactions with Care Providers Ultrasounds & other testing very disjointed & difficult Many visits before there was any certainty -> lots of waiting Many examples of vague, unclear information, in an effort to spare the family bad news Families left in limbo Need for hope

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Fragmented Interactions with Care Providers Too medical Not always done with compassion Its hard for doctors. Their focus is on what needs to be done, whats wrong and how do we fix it, but theres so much more history with the parents behind that. I need to have hope. I know what the reality is, but I still need the little bit of hope. It would help if doctors could seem like there is more hope; they dont really talk positively. I wouldnt be so depressed if they saw a little more hope, or showed it, not even believing it.

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Fragmented Interactions with Care Providers Palliative care consultations helped most: It was helpful learning what we could do: photos, how we can prepare, option to take her home as soon as possible. They made me feel like they would take care of her like I would take care of her as a parent, not as they would take care of her as a doctor (crying), that was the most important part to me. Their focus was different. Helped by being there for us on the emotional side. Learning about Now I Lay Me Down to Sleep

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Disconnected Family and Friends Some extended families expected a miracle, leaving the grieving parents to try to explain why that wasnt possible. [My sister] was like maybe there will be a miracle. And Im thinking, this isnt Charlie Brown special. Awkward interactions with peers No one really understood what they were going through I think shes trying too hard to be [helpful], which is making her not helpful at all.

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Disconnected Family & Friends One couple described going to a party with another pregnant woman there: We were the white elephant in the roomIt was the first time I realized how differently we were going to be treated. Some people say I know how you feel or I know what youre going through, but you really dont. I understand if youve lost a child, but maybe not a baby when hes born. At a certain point, I dont want to hear everybodys sob story because I just want to deal with my own.

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Utterly Alone Families described being stuck on an island Deserted by providers So isolated In limbo

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Conclusions Families want clear, timely information, presented with compassion. They dont want false hope but need to maintain some hope. They want to legitimize and honor the humanity of their child. They want to feel like they are not alone. They need to feel that they are still parents.

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Implications for Care Ideal Model would include Multidisciplinary Perinatal Care Perinatal Support Continuity Clinic Docs: Obstetricians, Palliative Care Specialists, Neonatologists, Pediatric/Ob Subspecialists (Genetics, Cardiology, Developmental Peds, etc.) Ob and NICU Nurses, SW, Chaplains, Ethics, Art/Music therapy Bereavement Services Continuity of Care Begin in at the time of diagnosis and follow to birth, death and beyond. Birth Plans, Standard Order Sets, Hospice Room

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Future Research Longitudinal study From diagnosis to death Learn from the parents what they are going through, at each stage Learn from the parents what they need Separate interviews with fathers

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Acknowledgements David Korones, MD Eva Pressman, MD Irene Cherrick, MD Carol Dawson, RN, PNP Loralei Thornberg, MD Patricia Chess, MD Carl DAngio, MD Ronnie Guillet, MD

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References Ananth, CV et al. A Comparison of foetal and infant mortality in the United States and Canada. Int. J of Epidemiology 2009; 38: 480-489. Sumner, L H. et al. Extending Palliative Care into Pregnancy and the Immediate Newborn Period: State of the Practice of Perinatal Palliative Care. J Perinat Neonat Nurs. 2006; 20(1): 113-116. Munson, D & SR Leunthner. Palliative Care for the Family Carrying a Fetus with a Life-Limiting Diagnosis. Ped Clinics for North Am. 2007; 54(5). Boss, RD. et al. Values Parents Apply to decision-Making Regarding Delivery Room Resuscitation for High-Risk Newborns. Pediatrics. 2008; 122: 583-589. Sumner, LH et al. Extending Palliative Care into Pregnancy and the Immediate Newborn Period. J Perinat Neonat Nursing. 20(1): 113-116. Leuthner, Steven et al. Fetal Concerns Program: A Model for Perinatal Palliative Care. Amer J of Maternal/Child Nursing: 32(5): Sept/Oct. 2007, 272-278. Breeze, ACG, et al. Palliative care for prenatally diagnosed lethal fetal abnormality. Arch Dis Child Fetal Neonatal Ed. 2007; 92: F56-F58. Leuthner, SR and R. Pierucci. Experience with Neonatal Palliative Care Consultation at the Medical College of Wisconsin- Childrens Hospital of Wisconsin. J of Palliative Med: 4(1), 2001. Pierucci, RL. Et al. End-of-Life Care for Neonates and Infants: The Experience and Effects of a Palliative Care Consultation Service. Pediatrics 108(3), Sept 2001. Norton SA, et al. Proactive palliative care in the medical intensive care unit: Effects on length of stay for selected high-risk patients. Crit Care Med. 2007 35 (6). Steinhauser, K.E. Measuring End-of-Life Care Outcomes Prospectively. J of Pall Med. Vol 8, supp 1, 2005. S-30- 41. Teno, J.M. Measuring End-of-Life Care Outcomes Retrospectively. J of Pall Med. Vol 8, Supp 1, 2005. S-42-49. Cartwright A, et al. Life before death. London: Routeledge and Kegan Paul, 1973. Casarett et al. Surveys to assess satisfaction with end of life care: Does timing matter? J Pain Symptom Mgmt. 2003, 25: 128-132. Center to Advance Palliative Care. CAPC.org. Teno, J.M. et al. Validation of Toolkit After-Death Bereaved Family Member Interview. J Pain & Symp Mgmt. 2001 Vol 22 (3): 752-758. Sandelowski, M. Focus on Research Methods: Whatever Happened to Qualitative Description? Research in Nsg & Health. 2000. 23: 334-340. Black, B. & Sandelowski, M. (2010). Personal growth after severe fetal diagnosis. West J Nurs Res 32.

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Publication Ct-Arsenault, D and Denney-Koelsch, E.. (2011). My Baby is a Person: Family Experiences with Life- threatening Fetal Diagnosis. Journal of Palliative Medicine. Volume 14 (12): 1302-1308.