Perinatal Grief and Loss



Perinatal Grief and Loss


Suzanne McMurtry Baird

Meghan Bertani-Yang

Betsy Babb Kennedy










  • To Cure Sometimes


  • To Relieve Often


  • To Comfort Always


  • —Hippocrates


Introduction

Pregnancy and birth are usually a time of happiness and celebration. The death of a pregnant woman or her newborn is an unexpected, tragic event that profoundly affects the lives of her family, friends, healthcare providers, and the community.

It is important to develop and implement a comprehensive, individualized plan of care incorporating the physical, emotional, cultural, and spiritual aspects of care in collaboration with other healthcare team members. Figure 21.1 is a conceptual model for grief care.






FIGURE 21.1 Grief care conceptual model.


Spiritual and Religious Needs

While a woman’s spiritual and religious beliefs and preferences may provide comfort and hope for both her and her family, they inform care provided by the healthcare team. Hospital chaplains or the family’s private spiritual leader provide invaluable guidance to the healthcare team by exploring the family’s beliefs, values, and religious practices, while offering spiritual support. It is important for all care team members to evaluate their own personal attitudes and beliefs, and how they may influence the spiritual care provided to a grieving family.


Cultural Differences in Grief

Women and their families possess diverse cultural attitudes and beliefs. Understanding their attitudes, beliefs, and traditions is necessary for the healthcare team to provide comprehensive care during times of grief and end of life (EOL). While anticipating common grief practices and reactions among various cultures can be helpful, it is important to remember individual differences prohibit generalizations to every member of each culture. Therefore, the most effective way to provide the most supportive care for the woman and her family is to not make assumptions, but to ask what would be most helpful for them. The use of qualified, on-site, medical translators, and/or electronic language assistant systems is helpful for effective communication if required during this distressing time. Most hospitals/agencies advise against noncertified members of the healthcare team and/or family members serving as an interpreter. In addition, some cultures do not fully disclose disease or care information and the care provider should understand the wishes of the woman/family. Care providers should respect cultural and personal values, beliefs, and family preferences. All care, treatment, and services should be in a manner that meets both oral and written communication needs.



Part 1 Caring for the Dying Newborn







































SELF-ASSESSMENT QUIZ TRUE FALSE
1. Chronically ill newborns become tolerant of painful procedures.
2. A fetus can feel pain as early as 20 weeks’ gestation.
3. Newborns experience less pain than adults because of immature neurologic systems.
4. Morphine is never the drug of choice to treat pain because of the side effect of respiratory depression.
5. Newborns in intensive care units (ICUs) are subjected to up to 130 procedures every 24 hours many of which are painful.
6. Dying newborns need 130 cal/kg/day for maintenance nutrition.
7. All families should be at the bedside of a dying newborn.

Answers may be found at the end of this module. If you answered all statements correctly, you are well on your way to providing excellent comfort care for the dying newborn


“Those we have held in our arms for a little while, we hold in our hearts forever.”

—Author Unknown


“Each new life, no matter how brief, forever changes the world.”

—Author Unknown


“How very quietly you tiptoed into our world, silently, only a moment you stayed. But what an imprint your footprints have left upon our hearts.”

—Author Unknown


Perinatal Loss

Perinatal losses are not an uncommon event. According to Callister,1 around 7 million perinatal losses occur throughout the world. In the United States, the perinatal mortality rate in 2011 was 6.26 per 1,000 births.2 It is difficult to obtain an accurate rate for perinatal losses due to various definitions of what constitutes a perinatal loss. The American Academy of Pediatrics (AAP) states three recognized definitions3:



  • Perinatal death, definition I, includes infant deaths that occur at less than 7 days of age and fetal deaths with a stated or presumed period of gestation of 28 weeks or more.


  • Perinatal death, definition II, includes infant deaths that occur at less than 28 days of age and fetal deaths with a stated or presumed period of gestation of 20 weeks or more.


  • Perinatal death, definition III, includes infant deaths that occur at less than 7 days of age and fetal deaths with a stated or presumed gestation of 20 weeks or more.

It should be noted that these definitions do not include early losses (less than 20 weeks’ gestation), so it can be presumed that the perinatal mortality rate is much higher than what is reported. These data highlight the importance for medical staff to be educated and trained on how to care
for a woman and her family experiencing a loss; there is a high likelihood that medical staff will encounter these situations many times throughout their careers.

AWHONN uses the classification system in Table 21.1 to describe perinatal losses and includes early losses.4








TABLE 21.1 PERINATAL LOSS










TYPE OF LOSS DEFINITION
Ectopic pregnancy
Miscarriage (i.e., spontaneous abortion)
Stillbirth
Neonatal death
Implantation occurs outside of the uterus
Loss occurs at ≤20 wks’ gestation
Loss occurs at >20 wks’ gestation
Loss occurs after birth through the first 28 d of life
From Association of Women’s Health, Obstetric and Neonatal Nurses. (2006). Perinatal loss: A continuum of loss. www.awhonn.org/Resources_Documents_pdf_2_DOD_POEP10_PerinatalLoss.pdf . Accessed January 18, 2015.

Miscarriages and stillbirths precipitate bereavement, as they are often unexpected and sudden. The cause may never be known, but the loss is typically never forgotten by the woman or her family.5 Most families that choose the palliative care option for their fetus or infant with a known life-limiting condition usually experience either a stillbirth or neonatal death.

Another type of perinatal loss is a medical interruption of a pregnancy (sometimes referred to as elective abortion). There may be many reasons why a woman chooses to end a pregnancy, one of which is because the fetus has a congenital abnormality that may be incompatible with life or result in a poor quality of life (i.e., a life-limiting condition). When the diagnosis is made in utero, many women cannot imagine continuing the pregnancy. They are afraid of becoming so attached to the baby only to have the newborn not survive for very long after birth. It is just as important to support these women and their families as research has found that those who terminated their pregnancies experienced higher levels of trauma. However, almost 88% of those women stated they would make the same decision again as they felt that it was easier than delivering a malformed baby.6 Many times it is assumed that because a woman is choosing to terminate her pregnancy, she must not love or want her baby. For the majority of women this is untrue. Unfortunately, because of this assumption, these women do not receive the same type of support from the medical staff and/or family and friends. They are not offered keepsakes or educational materials about grief. This can be devastating for these women who are already at high risk for depression and other negative effects. Recommendations for the healthcare providers involved in the care of women during and after termination of pregnancy for fetal anomaly (TOPFA) include the following6,7,8:



  • Develop protocols for care of the woman, family, and disposition of remains.


  • Ensure a supportive care provider.


  • Provide continuity of care.


  • Supply appropriate educational materials before and after the procedure.


  • Offer anticipatory guidance about what to expect.


  • Create/collect and deliver meaningful keepsakes.


  • Conduct follow-up calls.


  • Provide compassionate care, demonstrated through listening, therapeutic touch, and presence.


The delivery of a miscarriage, stillborn, or a terminally ill infant is an event that produces enormous stress for the new mother and family. Women may remember details of their loss as well as the care they received during the loss throughout their lives.9 The intrapartum and perinatal nurses must function as a care provider, support person during the grief process, patient advocate, and coordinator of care.7 The nurse should assess the woman’s needs and proceed with developing a patient-centered plan of care as soon as it is known that the demise has occurred.10 Genuine listening and presence of the nurse with the woman, her partner, and family cannot be underestimated. Many hospitals have developed bereavement programs to assist parents with the grief process through coordination of services and ongoing sensitive care. Bereavement checklists can help in provision of consistent, comprehensive, and complete care.

Immediately after the birth of a demised infant, both parents are in the shock phase of grief. Additionally, the woman is concerned with her own personal health and safety, as after any
birth. Questions relating to the reason for the death arise and are often difficult or impossible to answer. The nurse’s role during this initial phase is both to provide physical care for the woman and to assist with the process of grief. There are many manifestations of grief that may present in the woman, partner, and family, but it is important to remember there is no “usual” or “normal” way to express grief. Each woman, partner, and family may demonstrate different feelings and behaviors. Examples of manifestations across psychosocial, physical, cognitive, and behavioral domains include:



  • Feelings of sadness, anxiety, hopelessness, detachment


  • Tightness in the throat or chest, fatigue, weakness, shortness of breath


  • Confusion, distractedness


  • Sleep disturbance, appetite disturbance, withdrawal, avoidance, crying

To begin to grieve for the infant lost, it is necessary for the parents to create memories of the child. Parents should be offered adequate time to hold and touch the newborn in a private setting. The family may wish to view the infant multiple times. The nurse can wrap the infant in a blanket and remain with the family, if needed or requested, to answer questions. It is common for parents to remark on the gender of the child, the perfection of hands or feet, and family resemblance—in effect, to claim the child as their own. Naming the child is another activity that assists parents with this process of claiming the child who has died.

The nurse has ongoing responsibilities in coordinating care for the woman and her family. Decisions about location of the postpartum stay, notification of hospital staff who will be in contact with the woman, and notification of support services (e.g., social services, clergy, grief counselors) are tasks for the nurse. The woman may not wish to stay in the obstetric setting and prefer to recover during her postpartum stay in another area, away from the newborn nursery. It is important for all care providers to be aware of the family’s loss. The hospital should devise a system for alerting other healthcare providers and staff that a loss has occurred, hopefully prevent awkward and painful encounters. The nurse must also facilitate and allow ample time for decisions to be made about disposition of the infant’s remains.

Finally, perinatal nurses must consider their own feelings related to the loss. Just as parents search for the answers to why the loss occurred, so do care providers. It is also common for nurses to avoid the family because of the uncertainty of how to help or feelings that medical care has failed this family. The belief that every pregnancy should or will have the outcome of a healthy infant is common, but not realistic. Nurses need to examine their role in good outcomes, while accepting the fact that poor outcomes cannot always be prevented. A hospital with a carefully considered plan for assisting families with perinatal loss also considers these needs of the care providers. Strategies for supporting care providers are presented later in this module.


Perhaps, one of the most difficult aspects of caring for a family experiencing a perinatal loss is not knowing what to say. Many times people are afraid of saying the wrong thing; therefore, it leads to silence. Silence can be detrimental to the family, as they may perceive that silence means their nurse either does not recognize their loss or does not care about it.11 While silence is harmful, so is saying something wrong. The attitude of the nursing staff can directly affect how a family copes with the loss, which has long-term implications. Therefore, it is important for nurses to receive education and training in communication during bereavement situations, which lead to more confidence and increased levels of comfort in these situations. What women and their family need the most is for the nurse to have a positive perspective and to reassurance the patient that she is not at fault.5


Table 21.2 provides guidance for talking to women and families experiencing a perinatal loss.

NOTE: Families often ask nurses for advice and help in decision-making. It is important for the nurse to refrain from giving personal advice, but appropriate to speak about what other families have found helpful.


Palliative Care of the Fetus or Newborn

Despite recent advances in medical technology, many lethal conditions that a baby can develop in utero have no cure. These medical advances have led to an increase in the ability to make these diagnoses prenatally, therefore, allowing parents to have the time to prepare for the birth and to
make a decision as to the best plan of care for their child. In order to help parents through this difficult time, they should be referred to a palliative care team. A palliative care team is an interdisciplinary team that often comprised a palliative care physician, nurse practitioner/advanced practice nurse, bedside nurse, social worker, chaplain, and other members to help provide psychosocial care for the family (e.g., a child life specialist to support any siblings of the newborn).








TABLE 21.2 COMMUNICATION DO’S AND DON’TS





































DO’S DON’TS
Do listen more than you talk Don’t dominate the conversation
Do allow for silence Don’t ask one question after another without a break
Do answer their questions and refer them to the most appropriate people Don’t use clichés such as:
“I know just how you feel”
“At least you have other children”
“You can always have another baby”
“At least you didn’t really know your baby”
“This will bring your family closer”
Do refer to the baby by name (if they have named the baby) and talk about special features of the baby Don’t avoid them because you are uncomfortable (avoidance adds pain; acknowledgment of their loss is what they need)
Do be genuine and caring Don’t change the subject when they talk about their dead baby
Do allow them to express their feelings and tell their story without passing judgment Don’t answer a question you don’t have the answer to
Do encourage them to be patient with themselves and not expect too much Don’t give advice or relay personal experiences.
Do ask about the funeral or memorial service Don’t make comments that suggest they or their baby received inadequate care
Do ask about other family members (siblings, spouses, grandparents) Don’t make comments that they should have received care sooner (they already have doubt and guilt)
Do ask if they have any special requests of you Don’t talk only with mothers (include fathers, children)
From Wilke, J., & Limbo, R. (2012). Resolve through sharing (RTS): Bereavement training in perinatal death (8th ed.). La Crosse, WI: Bereavement and Advance Care Planning Services, Gunderson Lutheran Medical Foundation, Inc.


Perinatal palliative care is a compassionate model of care that begins with diagnosis in the womb and continues through the birth and death of the baby. One major objective of perinatal palliative care is to help the family to celebrate their baby for whatever length of time they have together. The overall purpose is alleviate suffering of the infant, emotionally support the family, and make sure the family is given honest information in a timely manner.12

When the parents first meet with the palliative care team, they are often in shock and perhaps even in denial, so it is important for the team to make sure the parents have a clear understanding of the diagnosis. This is a crucial aspect of the process as the only way the parents can make the most appropriate decision for them is if they have a full understanding, which also helps to ensure the most informed decision. It is also vital for the team to be aware that when the parents received the diagnosis, the grief process began. Therefore, the team should respond with empathy and to understand how difficult it may be for the parents to comprehend the entire situation. When the option of comfort-only, or palliative care, is presented to parents, it can cause some angst as it goes against what parents instinctually want to do for their baby—protect them and save them from anything that will cause harm.

NOTE: It is difficult at first for parents to understand how doing “nothing” for their baby is actually doing “something.”

Palliative care involves providing interventions that limit the amount of pain and suffering a baby may experience during the dying process and ensures the best quality of life. This is done
by providing pain medication, nutrition, and other measures to make the baby comfortable. The main objective of comfort care is to limit and preferably to prevent any medical procedures that may cause discomfort or pain, such as placing IVs.

Ideally, the palliative care team meets with the parents several times before developing the care plan for the baby. Once the family has chosen the option of comfort care, the plan is discussed with the entire team to help the family decide on all the various details. A comprehensive plan of care when providing comfort care only at birth should include the following components:



  • Information about the diagnosis


  • Woman’s preferences during labor and birth (e.g., monitoring or no monitoring of the fetal heart rate)


  • Method of birth (vaginal birth is preferred in these situations in order to minimize complications for the woman)


  • Care of the baby after birth (e.g., how to provide nutrition, pain medication)


  • Family members and others who will be present during and/or after birth


  • Spiritual care needs (e.g., baptism or other religious rituals/ceremonies)


  • Keepsakes/mementos desired


  • Postmortem care (e.g., autopsy, funeral arrangements)


  • Plans for hospice care if baby survives until discharge

Once the plan has been developed, it can be helpful and beneficial for the family to continue to meet with the palliative care team or to at least stay in contact with some of the members and continue to receive ongoing support. Anticipatory grief can be as difficult to deal with as grief that is experienced after the death. Many families report that the time spent waiting between diagnosis and the birth is the most difficult.12 Families oftentimes feel a sense of relief after the baby has been born and has died because they no longer have to experience the anticipatory grief and can move forward along the grief recovery continuum.

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Nov 6, 2018 | Posted by in GYNECOLOGY | Comments Off on Perinatal Grief and Loss
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