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Perinatal bereavement

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By: Margaret Hopkins BSN, RN, CCRN, C-ELBW, CPLC, HNB-BC; Heather Davies MSN, RNC-MNN; Kara Hennessy MSN, RNC-OB; and Melissa Barry BSN, RN, CPN
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Families and caregivers require support and guidance.

Takeaways:

  • Perinatal bereavement affects families for a lifetime.
  • Trained professionals can help guide them on this journey and begin healing.
  • Teaching nurses and other staff how to properly handle these moments and also to take care of themselves builds resilience

Whether a baby dies from miscarriage, stillbirth, or after birth, families experience grief. How medical professionals respond during this vulnerable time will affect families for the rest of their lives. Appropriate guidance from caregivers can help start the healing process. Medical professionals themselves need guidance in just how to walk families through this journey. They also need to learn how to manage their own feelings to maintain their personal resilience. (See Perinatal loss defined.)

Ectopic pregnancy

Courtney Thomas*, a 30-year-old patient, is 6 weeks pregnant with…

Every year at Hackensack University Medical Center, a 781-bed academic hospital in Northern New Jersey, approximately 100 out of 6,000 delivered babies die. This creates a significant psychological impact for the families left behind. A unique traumatic life event, perinatal loss requires a specialized approach to care.

The Forget Me Not Foundation, established in 2009, has a dual mission to furnish memory-making supplies to bereaved families and to support bereavement education for the medical community. The foundation sponsors the educational offerings at Hackensack University Medical Center. The hospital’s current course is based on the 2-day Resolve Through Sharing (RTS) Program founded by Gunderson Health System and is taught with permission from that organization. RTS, an evidence-based curriculum, includes lectures, slides, videos, and interactive activities. Since 1981, the course has been used to educate over 50,000 healthcare professionals.

Who

Most people might think only labor and delivery and neonatal intensive care unit nurses need education about perinatal loss. However, many other professionals can benefit. Consider these team members:

  • The respiratory therapist who turns off the ventilator when a family chooses to change goals to comfort care. They must be with the heartbroken family while doing this and also navigate their own complex feelings.
  • The emergency department nurse who cares for a woman having a miscarriage at 16 weeks.
  • The social worker who assists a family planning their baby’s funeral.
  • The nursing assistant who cares for a woman whose baby just died.
  • The lactation consultant who helps a woman figure out what to do with her milk when she no longer has anyone to feed.
  • The unit clerk who greets a family every day when they arrive to visit a surviving twin.
  • The obstetric resident who doesn’t yet know how to talk to a family about death.

Caring for bereaved families can be demanding and draining for nurses and other healthcare professionals. They need training and support to know the right things to say and do. They also need education about how to take care of themselves in these complex situations. A perinatal bereavement educational program can be a valuable asset to any organization that cares for these populations.

Why

The National Association of Neonatal Nurses’ position statement on palliative and end-of-life care for newborns and infants calls for nurses to receive training that prepares them to provide support to bereaved families. This includes memory-making and follow-up services.

In 2014, New Jersey established the Autumn Joy Stillbirth Research and Dignity Act, which requires the New Jersey Department of Health to establish hospital policies and procedures for stillbirths and to establish a state-wide stillbirth research database. The goal is to establish healthcare workers’ (including nursing, mental health, and social work professionals) dignified and sensitive management of each stillbirth. The act’s provisions include the following:

  • Establish a bereavement checklist and written information available for grieving families.
  • Teach families what to expect during the loss process.
  • Accommodate families’ religious and cultural beliefs.
  • Inform families about grief counseling.
  • Educate families about the importance of autopsies.
  • Provide memory-making supplies for footprints, photographs, and memory boxes.
  • Facilitate time spent holding the baby who has died.

How

In 2011, the Forget Me Not Foundation sponsored 20 obstetrical and neonatal nurses at Hackensack University Medical Center to receive perinatal bereavement certification from RTS. These nurses formed a perinatal bereavement committee with the goal of supporting grieving families and developing staff education. In 2014, with permission from RTS, our certified bereavement nurses developed and presented the hospital’s first perinatal loss training to 34 obstetrical and neonatal nurses. Since then, classes have been taught about twice a year, with registrations limited to 50 individuals per class. (See Course content.)

The committee then extended the course’s reach to other healthcare professionals. First, they offered the training to nurses from antepartum, main nursery, and emergency departments. Then they provided it to other interdisciplinary team members, including social workers, respiratory therapists, physicians, midwives, child life specialists, doulas, bereavement counselors, photographers, patient transporters, patient care associates, and front desk greeters. Before the COVID-19 pandemic, the class was open to all healthcare professionals, regardless of their place of employment. Currently, it’s limited to employees within the hospital network. (See Course feedback.)

Since the first training in 2014, the medical center has adhered to the requirements of the Autumn Joy Stillbirth Research and Dignity Act. The bereavement committee’s first chair created a resource binder for staff to access when caring for a bereaved family; we continue to update it regularly. The effort has become interprofessional. For example, the committee collaborates with the emergency trauma department and same-day surgery to support patients and families experiencing miscarriage or early term loss that requires surgical intervention. We provide small care packages for their patients along with informational pamphlets. In addition, the department of nursing education collaborated with the pathology department to rewrite the autopsy consent.

Course content

The 8-hour Perinatal Loss and Bereavement Training Class at Hackensack University Medical Center includes lectures, videos, and group interactions.

What to say (or not)

A big part of the class focuses on what not to say to grieving families and then what’s appropriate to say. For example, nurses and other healthcare staff should avoid saying the following:

  • “The baby is now an angel in heaven.” Not everyone shares that religious view.
  • “You’re young and can have another.” Another baby won’t replace the one who died.
  • “The baby is better off.” Every family believes their baby would be better off alive and healthy in their arms.

We advise course participants that it’s always okay to say, “I’m sorry,” and “I wish I had better news for you.” They should speak the baby’s name and refer to the parents by their preferred parental names because that’s who they are. We also remind attendees that not all families are made up of a mother and a father. They may care for two mothers, two fathers, or a single parent. They’re all experiencing legitimate grief.

Finally, we give participants permission to say nothing. They don’t have to continuously speak when with the grieving family. Silence can be powerful and therapeutic.
Other course highlights include the following:

  • Building and maintaining relationships. What to say and what not to say
  • Caring for the caregiver. Staff self-care to remain present for families
  • Fathers, same-sex couples, teens, grandparents, and children. Grief isn’t limited to birth mothers
  • Giving care: The NICU provider consultation. The plan at birth
  • Giving care: The obstetrical provider. How to manage a life-limiting diagnosis
  • Giving care during neonatal death, including palliative care. The period from birth up until 28 days of life; also can include the duration of the NICU stay
  • Giving care during perinatal loss in labor and delivery. The period from early or threatened miscarriage until birth or post-procedure care
  • Giving support: Social services and child life. Interdisciplinary effort
  • Making memories. Photographs, foot molds, memory boxes
  • Parent panel. Four parents and one grandparent share their experiences of perinatal loss
  • Understanding normal grief. How it varies, how to get support

Looking to the future

The perinatal bereavement committee continues its mission of aiding families during their loss and teaching staff the skills needed to support them. Currently, the committee is developing an evidence-based study to look at the effectiveness of this training in improving the confidence levels of staff caring for these families. After completion, the committee hopes to make this program the standard of care for all the hospitals in the network and to help other hospital systems establish their own perinatal bereavement programs. In addition, the committee plans to expand these efforts into the pediatric and adult patient populations.

All the losses during the pandemic have magnified the universal need for bereavement education—in nursing school and beyond. Caring for patients doesn’t stop at the end of life.

The authors work at Hackensack University Medical Center in Hackensack, New Jersey. Margaret Hopkins is a staff nurse in the neonatal intensive care unit. Heather Davies is a staff nurse in labor and delivery. Kara Hennessy is an education specialist–OB service in the department of clinical education. Melissa Barry is a staff nurse in the Pediatric Center for Heart Diseases.

American Nurse Journal. 2023; 18(2). Doi: 10.51256/ANJ022313;

Key words: perinatal death, miscarriage, stillbirth, bereavement, grief, self-care

References

Autumn Joy Stillbirth Research and Dignity Act; 2014: NJSA 26:8-40.27 et seq. Adopted December 19, 2017. pub.njleg.gov/bills/2012/S3000/2843_I1.HTM

Centers for Disease Control and Prevention. Infant mortality. June 22, 2022. cdc.gov/reproductivehealth/maternalinfanthealth/infantmortality.htm

Forget Me Not Foundation. Mission. fmnfoundation.com/mission

Gunderson Health. Resolve Through Sharing Bereavement Education Since 1981. resolvethroughsharing.org

Kalu FA, Larkin P, Coughlan B. Development, validation and reliability testing of ‘Perinatal Bereavement Care Confidence Scale (PBCCS).’ Women Birth. 2020;33(4):e311-9. doi:10.1016/j.wombi.2019.07.001

March of Dimes. Miscarriage, loss and grief. marchofdimes.org/complications/loss-and-grief.aspx

National Association of Neonatal Nurses. Palliative and end-of-life care for newborns and infants: Position statement. February 2015. nann.org/uploads/About/PositionPDFS/1.4.5_Palliative%20and%20End%20of%20Life%20Care%20for%20Newborns%20and%20Infants.pdf

Let Us Know What You Think

2 Comments. Leave new

  • I’m excited about the approach of this training never read about it or heard about it. Thanks to ANA for highlighting an all inclusive training from bed side care providers to patient transporters not leaving out the front desk staff. I’m a Registered Nurse and couple of years ago faced that critical moment of perinatal bereavement which can never go away.

    Reply
    • Margaret Hopkins
      March 17, 2023 4:11 am

      Thank you for your kind words. Our front desk staff are valued members of the team. The person that really stands out for me is the respiratory technician who turns off the ventilator in cases when a decision has been made to redirect goals of care to comfort. That is such a tangible part of the transition process.

      Reply

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