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Perinatal Bereavement and Palliative Care Offered Throughout the Healthcare System

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Perinatal Bereavement and Palliative Care Offered Throughout the Healthcare System 29 Review Article Perinatal bereavement and palliative care offered throughout the healthcare system Charlotte Wool1, Anita Catlin2 1Department of Nursing, York College of Pennsylvania, York, PA, USA; 2Kaiser Permanente Santa Rosa, Santa Rosa, CA, USA Contributions: (I) Conception and design: A Catlin; (II) Administrative support: A Catlin; (III) Provision of study materials or patients: All authors; (IV) Collection and assembly of data: All authors; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors. Correspondence to: Anita Catlin, DNSc, FNP, CNL, FAAN. Manager of Research, Kaiser Permanente Santa Rosa, Santa Rosa, CA, USA. Email: [email protected]. Abstract: The aims of this article are twofold: (I) provide a general overview of perinatal bereavement services throughout the healthcare system and (II) identify future opportunities to improve bereavement services, including providing resources for the creation of standardized care guidelines, policies and educational opportunities across the healthcare system. Commentary is provided related to maternal child services, the neonatal intensive care unit (NICU), prenatal clinics, operating room (OR) and perioperative services, emergency department (ED), ethics, chaplaincy and palliative care services. An integrated system of care increases quality and safety and contributes to patient satisfaction. Physicians, nurses and administrators must encourage pregnancy loss support so that regardless of where in the facility the contact is made, when in the pregnancy the loss occurs, or whatever the conditions contributing to the pregnancy ending, trained caregivers are there to provide bereavement support for the family and palliative symptom management to the fetus born with a life limiting condition. The goal for respectful caregiving throughout an entire hospital system is achievable and critically important. Keywords: Palliative care; perinatal palliative care (PPC); antenatal palliative care; hospital system Submitted May 02, 2018. Accepted for publication Oct 09, 2018. doi: 10.21037/apm.2018.11.03 View this article at: http://dx.doi.org/10.21037/apm.2018.11.03 Background respectively (4). Fetal mortality accounts for 40–60% of perinatal mortality (3). The term stillborn may be used to The loss of a dreamed for pregnancy/child is both a describe fetal deaths at 20 weeks’ gestation or more. physiological event for a woman as well as an emotional and Women who experience early pregnancy loss, or a fetal sociocultural one. Women often form attachments to their or infant death, may interface with the health care system child early in the pregnancy and therefore a pregnancy loss in a variety of ways and receive services from multiple can be emotionally devastating regardless of the gestational personnel from many disciplines. Women with a loss may age of the fetus (1). Early pregnancy loss, also referred to be seen in the health care clinic, prenatal office, emergency as spontaneous abortion or miscarriage, occurs in 10% department (ED), the operating room (OR), the maternal- of known pregnancies and occurs in the first 13 weeks of child services department, the neonatal intensive care unit pregnancy (2). Perinatal mortality is the combination of (NICU), and/or the palliative and hospice service lines. fetal deaths and neonatal deaths (3). In the United States Women and their families may encounter personnel from the fetal mortality rate for gestations of at least 20 weeks is across the health care system, such as chaplaincy, social similar to the infant mortality rate, 5.96 deaths per 1,000 service workers, genetic counselors, and support staff. live births and 5.98 infant deaths per 1,000 live births Organizations such as the Institute of Medicine (5) and © Annals of Palliative Medicine. All rights reserved. apm.amegroups.com Ann Palliat Med 2019;8(Suppl 1):S22-S29 Annals of Palliative Medicine, Vol 8, Suppl 1 February 2019 S23 the American Academy of Pediatrics have expectations that available services. One recent growing trend in end of life care will be delivered with quality (6). Provision perinatal bereavement care is the availability of of high quality, consistently provided bereavement care a cooling system embedded in to a bassinet that creates a culture of compassion and can improve the patient enables the deceased infant to remain with parents and family experience. Bereavement services have the for a longer period of time (10). Such a device can potential to impact the metrics of healthcare systems by provide clinicians with additional time to assess improving patient outcomes and satisfaction (7). The aims parental wishes and support women who have had of this article are twofold: (I) provide a general overview of unexpected surgery, a slow birth recovery, or who perinatal bereavement services throughout the healthcare are in emotional shock. system; and (II) identify future opportunities to improve (II) Ensure support for parental caregiving, such as bereavement services, including providing resources for holding, rocking, cuddling the infant, as well as the creation of standardized care guidelines, policies and providing hands-on care such as bathing, dressing educational opportunities across the healthcare system. and feeding as a standard of care (11). (III) Provide options for parents regarding the collection and offering of mementos, such as locks of hair, Maternal child services plaster molds of hands or feet, handprints, footprints, Maternity care services include prenatal care, labor and blankets, or a special stuffed toy upon discharge. birth, and postpartum care of a woman. Health care (IV) Photographs allow families to have a special approaches incorporate physical, psychosocial and cultural remembrance of their child. In a study of 104 families needs of the woman and her chosen family members. Fetal regarding photography after perinatal loss, Blood surveillance and interventions are provided prenatally and and Cacciatore found that 98.9% of parents who during the labor process followed by neonatal assessment had photographs endorsed them and for the and treatments following the birth. 11 parents who did not have photographs, 9 wanted For decades nurses in the maternity care services have them (12). Professional photography services such as sought ways to provide evidence-based bereavement “Now I Lay Me Down to Sleep” (13) are available in care to families experiencing pregnancy loss. Led by the most locations throughout the country. Support can work of nurse scientists, psychologists and other experts, be offered for parents who wish to take their own nurses and their professional colleagues often complete photographs. It is recommended that permission is education to promote relationship-based, patient-centered sought before staff members take these pictures. services between bereaved parents and themselves through (V) During the postnatal period following discharge, organizations such as Resolve Through Sharing (RTS) parents may appreciate follow up contact in the who has hosted over 50,000 professionals worldwide (8), form of cards, phone calls, and invitations to annual and Perinatal Loss and Infant Death Alliance (PLIDA) (9). remembrance ceremonies. Many professionals in maternity services cultivate their Perinatal palliative care (PPC) is a newer development expertise via patient-care experiences and formal and in maternity services which is a family-centered approach informal education and training. Standardized bereavement that augments maternity care with emotional, sociocultural guidelines are often available in the maternal-child unit and and spiritual support for parents who are continuing a are guided by recommendations from a variety of national pregnancy affected by a life-limiting fetal condition. When organizations, such as RTS (8) and PLIDA (9). The such a diagnosis is made parents have an opportunity to following list provides an overview of recommendations for participate in making plans, which can give them a sense bereavement services. of control as the pregnancy and birth progress. Programs (I) Assess parental desires for special end-of-life across the United States assist families by providing support, (EOL) rituals, such as spiritual practices (blessings, anticipatory guidance and the creation of birth plans that baptisms) and cultural preferences (family are tailored to parents’ personal needs and desires (14). presence, feeding), which enables providers to Advance care planning is a goal of PPC and includes the tailor interventions. For instance, assessing parental opportunity for parents to discuss concerns and hopes with desire to spend time or conduct rituals with their their health care providers (HCPs). Women may explore infant after death enables providers to offer specific options whether to have a vaginal or cesarean birth. © Annals of Palliative Medicine. All rights reserved. apm.amegroups.com Ann Palliat Med 2019;8(Suppl 1):S22-S29 S24 Wool and Catlin. Systemic bereavement support Advance care planning includes conversations about systems (22). Unfortunately, in many instances, palliative the newborn as well. Topics such as administering or care is offered sporadically and, in many cases, very late in withholding medical treatments are addressed and families the EOL trajectory. Similar to bereavement care in maternal can express how they want to spend the final days and child services, parents whose infant dies while in a NICU hours
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