Perinatal Palliative and Bereavement Care

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1 Perinatal Palliative and Bereavement Care BARBARA ACEVEDO, MSW RADHIYA WALTHER, MSN, RNC CHRISTINE TENIOLA, BSN, RNC JOYCE GUNNIP, BS, RN NANCY CAMARGO, BSN JOANNE RIFFIN-JACKSON, BSN

2 Objectives Upon completion of this module the student will: Summarize perinatal palliative care Explain the impact and expected outcomes of perinatal palliative care Identify one aspect of bereavement care that is family centered Differentiate between hospice and palliative care Create one activity that incorporates the family in the palliative care process

3 Introduction Perinatal palliative care and bereavement encompasses the care of the family who has experienced a fetal demise or fetal diagnosis of a lethal congenital malformation Lethal congenital anomalies account for almost 20% of all neonatal deaths annually (Wool et al., 2015) More than 1 million infants die within the first 24 hours of life, worldwide, making the day of birth the most perilous day of life (Kiman & Doumic, 2014) World-wide approximately 3 million infants die within the neonatal period due to infection, prematurity, and complications of birth (Kiman & Doumic, 2014) 38% of deaths annually in the U.S. are infants <1 Anomalies, prematurity, SIDS, pregnancy complications (Jones, 2011)

4 Hospice vs. Palliative Care Hospice Care The patient has <6months to live and curative measures have ceased Provided in the home (Jones, 2011) Holistic and patient centered Palliative Care Focuses on comfort measures alongside curative measures Hospital or home setting (Jones, 2011) Supporting the family emotionally, spiritually, physically, and socially through the diagnosis, care, death, and bereavement phases (Kiman & Doumic, 2014) Holistic and patient centered Can be used for long term life threatening conditions

5 Why Palliative Care for Perinatal Area? Helps families with coping and planning for birth of baby that is not expected to be healthy Interdisciplinary process that is family centered Continuum from diagnosis to birth and into death Honors family wishes Meets needs of family experiencing infant loss Provides families with meaningful moments to remember their special baby Kobler, Limbo, & Oakdale (2012).

7 Providing Support Have designated team (include SW, spiritual personnel, physicians & nurses) Avoid phrases in past tense until family refers to infant in past tense Call baby by the name given by parents Allow for silence Avoid phrases such as: It is for the best You can always try again Remember it is ok to show emotion never cry more than the family Incorporate the family in the care of their infant Provide bereavement resources within community for when mother is discharged home Ryan, Bernhard, & Fahlberg (2015)

8 Creating Memories and Moments Allow the family time with the infant Offer to bathe and dress the infant Allow for reading of stories, music, singing, additional family to visit Assess religious beliefs and encourage pastoral visits with or without baptism Offer to take pictures

9 Memories cont.

11 Care Beyond the Delivery Room Allow patient and family the ability to choose the best environment for extended care Identify supportive needs External family support Community resources Palliative care Psychology/psychiatry Social services Provide appropriate environment Bereavement door card Privacy Control visitation (financial services, Medicaid, etc.)

12 Care Beyond the Delivery Room Identify & respect cultural needs and beliefs Provide continued emotional support Identify family's coping abilities Recognize transitions through the grieving process Denial Anger Bargaining Depression Acceptance Discharge planning

13 Continued Comfort Care Allow for continued bonding Create memories Participation in care (feeding, bathing) Family involvement as per patients wishes Siblings Grandparents Aunts and Uncles Friends

14 The Butterfly Project- NICU Background Death during infancy is 5 times greater in twin gestation when compared to singletons (Kollantai, 2012). The death of one twin may create a limbo state for parents as they develop fear and uncertainty in regards to the surviving twin s outcome (Kollantai, 2012). Parents of a deceased multiple have conflicting emotions, mourning the loss of the baby who died while trying to celebrate the surviving baby (Cox & Wainwright, 2015). Cox and Wainwright (2015) discussed parents reporting healthcare providers did not acknowledge the loss of a multiple, did not know of the loss, or made statements such as at least one survived which caused a emotions to be marginalized.

15 The Butterfly Project- NICU Recognizing the Surviving Twin Project created by Newcastle Neonatal Service and Newcastle University, UK A Purple butterfly is utilized to symbolize the infant is a surviving multiple The purple butterfly will be placed on the infant s isolette or crib An additional purple butterfly will be placed on the infant s hard chart so that other healthcare providers performing surgery or tests can be aware Maternity will also place one on the mother s chart FY 16: 5 neonatal deaths of twins FY 17: 2 neonatal deaths of twins

16 Perinatal Hospice Prenatal diagnoses of lethal fetal anomaly Design an individualized plan of care Team approach

17 Celebration of Life Ceremony

Celebration of Life Ceremony Annual event where we celebrate the lives of the children that have passed away It was started in 2007 and this year will be the 10 year anniversary Patient s family and

18 Celebration of Life Ceremony Annual event where we celebrate the lives of the children that have passed away It was started in 2007 and this year will be the 10 year anniversary Patient s family and friends along with Broward Health staff are welcomed All of the children are recognized in our naming ceremony and families are provided with a gift in memory of their child It is a day of reflection where the Broward Health staff and medical team come and support families Also, families are able to share their testimony, say a poem, sing, play music, etc.

19 Conclusion Remember, as the nurse it is a privilege to be a part of the tender emotional moments our patients and families encounter. Be honored to be present when they need you and to provide them the experience that will help them during their worst times. Always incorporate them into the care, it is their infant; their loss; their grief; their memories.

20 Special Acknowledgement A special thank you to Melissa Abreu, Nurse Manager NICU, for sharing her MSN project on Perinatal Palliative care that was used as a template for today s presentation.

21 Thank you! We welcome any questions or comments.

22 References Jones, B. (2011). The need for increased access to pediatric hospice and palliative care. Dimensions of Critical Care Nursing, 30(5), doi: /DCC.0b013e ded Kiman, R., & Doumic, L. (2014). Perinatal palliative care: a developing specialty. International Journal of Palliative Nursing, 20(3), Kobler, K., Limbo, R., & Oakdale, C. (2012). Childbirth Education for Parents Receiving Perinatal Palliative Care. International Journal of Childbirth Education, 27(2), Ryan, A., Bernhard, H., & Fahlberg, B. (2015). Best practices for perinatal palliative care. Nursing, 45(10), doi: /01.nurse b Wool, C., Côté-Arsenault, D., Perry Black, B., Denney-Koelsch, E., Kim, S., & Kavanaugh, K. (2016). Provision of Services in Perinatal Palliative Care: A Multicenter Survey in the United States. Journal of Palliative Medicine, 19(3), doi: /jpm Catlin, A., & Carter, B. (2012). Creation of a Neonatal End of Life Palliative Care Protocol. Division of Neonatology, Vanderbilt University.

Serious Illness in Perinatal and Neonatal Settings

+ Serious Illness in Perinatal and Neonatal Settings Kathie Kobler, MS, APN, PCNS-BC, CHPPN, FPCN Center for Fetal Care Pediatric Palliative & Supportive Care Advocate Children s Hospital kathie.kobler@advocatehealth.com