Perinatal Loss: Nursing Support and Bereavement Care

Introduction and Scope of Perinatal Loss

The magnitude of perinatal loss, as measured by statistics, is significant. The impact and consequences of perinatal loss on the parents who experience it merit more detailed investigation. Adaptation to the loss of a pregnancy at any gestational age is a crisis for any parent, many of whom have had little experience coping with death. Approximately 25% of all pregnancies end in some type of loss — including miscarriage, ectopic pregnancy, stillbirth, or neonatal death (Woods & Esposito, 1987).

The interventions provided by healthcare professionals to bereaved parents must be delineated and defined from the beginning of suspected or actual diagnosis in order to best meet the individual needs of grieving couples. An understanding of both the ubiquity and individuality of the grief process, especially as it relates to perinatal loss, is a precursor to the formulation of specific nursing strategies designed to meet the unique needs of bereaved parents. When implemented, these strategies may assist the couple in their adaptation to the loss as they progress through the bereavement process.

While many couples today are waiting longer to conceive, few women — and even fewer men — anticipate or acknowledge a pregnancy outcome that is less than optimal. Despite advances in medical technology, not all pregnancies produce a healthy child; poor outcomes occur for many reasons, from cardiac and genetic defects to idiopathic cases. When they do, the emotional responsibility of caring for the grieving couple and family will depend heavily on how nurses react and handle the situation.

The healthcare system and care providers need to be knowledgeable in bereavement care so they are able to counsel and educate parents through this journey and provide holistic hospice care to meet the unique needs of both parents and their unborn baby. Palliative bereavement care services can begin as soon as the news of a poor outcome is delivered to the parents. The overall goal is to provide medical and ethical care that meets the needs of the grieving parents, while providing emotional support with empathetic care. This will decrease complicated grief outcomes, resentment, and the progression of depression in the mother and family, because the patient will understand that she is not traveling this crisis alone.

Statement of Problem

Perinatal loss encompasses many negative pregnancy outcomes, including miscarriage, stillbirth, therapeutic abortion, and neonatal death. One in five women suffers a perinatal loss.

Literature Review

Armstrong (2007) states that perinatal loss "includes fetal death (early or late) or neonatal death within the first 28 days of life. The incidence of early fetal death (before 20 weeks' gestation) is conservatively estimated at 1 in 6 pregnancies. In 2002, fetal death after 20 weeks' gestation and neonatal death was reported at 11.1 per 1,000 live births." Armstrong's (2007) study, entitled "Perinatal Loss and Parental Distress After the Birth of a Healthy Infant," aimed to determine "whether levels of depressive symptoms and current stress related to prior perinatal loss differ from similar prenatal evaluations after the birth of a subsequent healthy full-term infant and investigate differences in depressive symptoms in the postpartum period among parents with and without a history of perinatal loss."

Of the original 206 parents participating in an earlier prenatal study, 74 participated at follow-up. These were divided into two groups: one with a history of perinatal loss and one with no prior losses. The study was conducted through telephone surveys and interviews, and data were analyzed using descriptive statistics, chi-square tests, t-tests, and Pearson correlations. The primary outcome measure was the Impact of Event Scale (IES), an instrument used to evaluate the ongoing influence of a past stressful life event. Armstrong reports the results to include a "significant overall decrease in depressive symptoms after the birth of a healthy infant for fathers but not for mothers with prior perinatal losses" (2007).

One third of mothers with a history of loss "continued to report CES-D scores that placed them at a high risk for depression" (Armstrong, 2007). Perinatal losses are "traumatic events in the lives of parents and may have long-term consequences for the psychological health of families" (Armstrong, 2007). Following a perinatal loss, parents experience depressive symptoms, anxiety, guilt, prolonged grieving, and feelings of loss of control.

Pregnancies following perinatal loss tend to be stressful for both mothers and fathers. Mothers and fathers expecting a subsequent child often experience increased anxiety and symptoms of depression. For some women, "perinatal loss is described as a life-changing event." Moreover, these women reported a lack of confidence in the outcome of subsequent pregnancies, which continued even after the birth of a healthy child, along with fear that they would lose the healthy child as well. While it remains unclear whether perinatal loss results in depression even after a subsequent healthy birth, evidence suggests that increased psychological stress affects postpartum functioning and "the cognitive and behavioral development of infants whose mothers were diagnosed with this psychopathology." Maternal postpartum depression is "recognized and treated in as few as 10% of those affected" (Armstrong, 2007).

Maternal prenatal depression increases "the risk for the negative effects of this condition on mothers' newborns as early as the neonatal period. In addition, depressive symptoms during pregnancy can increase the risk for depression during the postpartum period" (Armstrong, 2007). Furthermore, "neonates of mothers with high depressive symptoms displayed physiological and biochemical mechanisms associated with depression compared with newborns of nondepressed mothers as early as the first postpartum week" (Armstrong, 2007).

Research has also identified a link between "maternal unresolved loss or trauma as a result of perinatal loss and the development of disordered attachment relationships between infants and mothers. In a study of 19 mothers and their infants born 12 to 19 months after a perinatal loss, the risk for disturbed attachment relationships was evaluated" (Armstrong, 2007). Findings revealed that 45% of infants "had disorganized attachment relationships with their mothers at 12 months of age — substantially higher than the expected prevalence of 15% for disordered attachment relationships found in other middle-class samples" (Armstrong, 2007).

Armstrong relates that it is not yet clear to what extent increased psychological distress observed during subsequent pregnancies persists following the birth of a healthy child. Understanding the trajectory of psychological stress after perinatal loss is important, and nurses are in a unique position to assist with this by working with expectant parents and identifying those most at risk for ongoing distress. Armstrong specifically states that neonatal nurses should "assess adaptation to parenthood and continued psychological distress for both parents in the weeks after birth" and "educate parents about this possibility" (2007).

Armstrong's (2007) study was two-fold in aim: (1) to determine whether levels of depressive symptoms and continued stress related to a previous loss differ from similar prenatal evaluations, and (2) to investigate differences in depressive symptoms in the postpartum period among parents with and without a history of perinatal loss. Research questions included: whether depressive symptoms and stress related to prior loss differ after the birth of a subsequent healthy infant compared to prenatal assessments, and whether depressive symptoms differ when comparing parents who have experienced prior perinatal loss with those who have not.

Armstrong cautions that the small sample size limits generalization of her findings, but suggests that follow-up care is needed for parents who have experienced perinatal loss and subsequently deliver a healthy child. Without attention, psychological harm may affect both parents and the healthy newborn. Armstrong also notes that differences in continued psychological stress between mothers and fathers after a subsequent birth require further evaluation, and that "understanding possible gender differences may help neonatal nurses and other healthcare providers to recognize couples at risk for discord" (2007).

Neonatal nurses are best positioned to identify depression and to ask about symptoms including mood, appetite, energy or fatigue levels, and ability to concentrate. Healthcare providers should not expect parents to volunteer this information, but should proactively assess psychological needs — including those of parents welcoming a healthy newborn after a prior loss.

The work of Gold, Dalton, and Schwenk (2007), entitled "Hospital Care for Parents After Perinatal Death," reports a systematic review of parental experiences with hospital care following perinatal loss. The study evaluated more than 1,100 articles published from 1966 to 2006, identifying studies of fetal death in the second or third trimester and neonatal death in the first month of life. Studies were limited to English-language articles evaluating care in United States hospitals and containing direct data or parental opinions. Findings were compiled across five aspects of recommended care:

(1) obtaining photographs and memorabilia of the deceased infant; (2) seeing and holding the infant; (3) labor and delivery of the child; (4) autopsies; and (5) options for funerals or memorial services (Gold, Dalton, & Schwenk, 2007).

Gold, Dalton, and Schwenk note that before the 1970s, "parents were typically not allowed to see or hold their deceased babies." In the decades since, psychology experts have led the way in recommending that parents have more contact with their deceased infants and be encouraged to commemorate their deaths. Several national guidelines have been published, though "the recommendations differ significantly in scope and focus, and there is little understanding of whether such policies are used in practice, how parents feel about the interventions, and whether certain interventions could be changed to better reflect the real-world preferences and experiences of bereaved parents" (Gold, Dalton, & Schwenk, 2007).

When perinatal loss is diagnosed prior to birth, parents and doctors must decide whether to induce delivery right away, delay induction for days or weeks, or wait for spontaneous labor. The location of postpartum care is also a sensitive issue. "It appears that few parents choose where to have their postpartum care; in one study, the numbers ranged from 6% to 33% of parents, depending on the infant's gestational age. A common theme was that mothers who stayed on a labor and delivery unit described exposure to healthy infants and mothers as emotionally difficult, but parents moved to general surgical or gynecology units often reported dissatisfaction with care" (Gold, Dalton, & Schwenk, 2007).

Regarding contact with the infant, studies found that holding the baby was "important to parents," with "46% of parents with second-trimester loss, 86% of parents with third-trimester loss, and 78% of parents with neonatal loss" rating holding the baby an essential bereavement option. A consistent theme across qualitative studies was that parents who had initially been hesitant to hold their infant later reported that holding had been a good choice and wished they had done so longer or more than once. "Of parents who initially declined to see or hold, many later said they probably would have accepted if they had been asked more than once" (Gold, Dalton, & Schwenk, 2007). Health professionals played a key role in whether parents saw or held their infants.

It is now common practice for hospitals to photograph infants after death, with photographs offered to parents and, if initially declined, placed on file for several years. "Parents overwhelmingly found that having photographs of their infants was important to them, and across all qualitative studies, only parents without photos expressed regrets" (Gold, Dalton, & Schwenk, 2007). Parents also valued being offered burial options, with fathers most likely to discuss these options with hospital staff. An emerging theme across qualitative studies was that parents "sometimes felt they had little control over the infant's disposition after death," with some unsure what had happened to their infant's body.

Autopsies were agreed to by 20–100% of parents in various studies; two studies found that 60–80% of families were offered the option. However, "a large number of parents complained that they were never given results of the autopsy, did not know they were entitled to these results, or did not know how to go about obtaining the records" (Gold, Dalton, & Schwenk, 2007).

Gold, Dalton, and Schwenk put forward the following recommendations to improve hospital care following perinatal death:

• Allow parents to help decide when to deliver a deceased fetus.
• Provide parents the option for post-delivery care on or off a maternity floor.
• Be sensitive to physical pain during delivery and offer adequate pain control. Avoid over-sedation when possible; minimize the use of tranquilizers as a treatment for grief.
• Encourage parents to see and hold their infants for extended periods and at multiple sittings, and offer parents who initially decline additional chances later.
• Take non-clinical photographs of cleaned infants as soon as possible after delivery. Include a photograph of multiples together even if one or more babies has died.
• Collect memorabilia about the baby. If parents decline these items initially, offer them again later or hold the materials for a future time.
• Discuss burial options with both parents when possible, and allow parents to participate in final decisions. Offer resources for financial support when available.
• Ensure autopsy results are provided to parents promptly.
• Educate other members of the obstetric team about interventions valued by bereaved parents.
• Ask other team members to perform key tasks — such as collecting memorabilia or taking pictures — particularly when the hospital does not routinely employ the intervention and when the attending physician or midwife models sensitive care (Gold, Dalton, & Schwenk, 2007).

The work of Hughes, Turton, Hopper, and Evans (2002), entitled "Assessment of Guidelines for Good Practice in Psychosocial Care of Mothers After Stillbirth: A Cohort Study," reports that most maternity units "have good practice protocols, advising that after stillbirth parents should be encouraged to see and hold their dead infant." The study aimed to assess "whether adherence to these protocols is associated with measurably beneficial effects on the psychological health of mother and next-born child" (Hughes et al., 2002). Their findings, however, indicated that behaviors promoting contact with the stillborn infant "were associated with worse outcome." Women who had held their stillborn infant were more depressed than those who had only seen the infant, while those who did not see the infant were least likely to be depressed. The authors acknowledge limitations and note uncertainty about why their findings diverged from those of other studies; the sample of mothers was also relatively small.

The work of Alexander (2001), entitled "The One Thing You Can Never Take Away: Perinatal Bereavement Photographs," states that "perinatal bereavement photography has become an accepted practice and is strongly recommended as a standard of care." Alexander adds: "Perinatal death is unique in its manifestations because the parents, families, and professionals grieve and mourn a short life with few or no visual remembrances" (2001). Key findings from Alexander's interviews include:

• A recurrent theme was parents' memory of professionals as human beings. The human contact of nurses and physicians was what bereaved parents remembered best.
• Based on information gained from case studies, nurses should be encouraged to standardize and personalize perinatal loss policies and procedures and to incorporate photography of stillborn infants and neonatal deaths into those policies. According to the parents interviewed, "the consistent practice of taking compassionate and respectful photographs of deceased infants is critical" (Alexander, 2001).

Proposed Solution: Screening and Interdisciplinary Care

The proposed solution is screening via an Admission Questionnaire — an assessment tool used as an initial screening instrument to evaluate a patient's risk status for psychosocial depression. The questionnaire addresses the following:

• Does the patient have a social support system?
• Assess personal adjustment to the pregnancy.
• Review a history of previous pregnancies, miscarriages, or abortions.
• Assess the patient's current emotional status and history.
• Discuss whether the pregnancy was planned or unwanted.
• Evaluate acceptance of the pregnancy.
• Ask questions regarding substance use or abuse by the patient or significant others.
• Review employment and education status.
• Determine whether the patient has financial and material resources available.

To implement strategies for bereaved parents at the time of diagnosis, an established perinatal palliative program must be in place. An interdisciplinary team is necessary, and team members should be contacted immediately. These include:

• The family — whoever is important to the mother and father.
• The obstetrical care provider, perinatologist, and bereavement-certified labor and delivery nurses.
• A genetics team, if indicated.
• A social worker on call for the hospital.
• Bereavement counselors.
• A pediatric care provider, neonatologist, and psychosocial counselors.

Psychosocial, bereavement, and spiritual support should begin at the time of diagnosis. Soon after diagnosis, interdisciplinary team members should provide information in stages to allow bereaved parents to process the situation. Information provided should include:

• Details about the condition, including certainty of diagnosis, potential course, expected complications and symptoms, etiology, and potential contributing factors.
• A review of decision-making guidelines and the advance care planning process.
• Assessment of the role of spirituality, religion, and culture.
• Determination of family values and goals, and assessment of parents' hopes and fears. Parents frequently fear that they will not be competent to meet their baby's needs.
• A review of medically and ethically appropriate treatment options.
• Assessment of family and community resources.
• Discussion of all decisions meriting inclusion in the care plan.

Prior to transfer to labor and delivery from triage, plans should be written in accordance with the patient's and family's wishes. A birth plan should address:

• Timing of delivery.
• Mode of delivery — vaginal or cesarean, with reasons discussed.
• Site of delivery — high-risk room or operating room — with discussion of recovery expectations and duration.
• Fetal monitoring of the premature infant: desired or not? Intermittent monitoring as a possibility? Does the family want to be informed of the absence of fetal heart rate or fetal distress?
• Who will be present: family, medical and nursing providers, interpreters if needed?
• Who will care for any siblings?
• Maternal medications: induction, pain control, and psychosocial support.
• Who will receive the baby? Who will cut the cord? Any special requests before viewing the baby?