Compassionate care

Patients have a multitude of unique needs at the time of a stillbirth. The obstetric care team is accustomed to joyous celebrations of life and in the setting of stillbirth, life, and death intersect in a painful way unique to this tragedy. It may be difficult to match the skills and training of obstetric nurses and physicians to the needs of a grieving family. The care of a grieving family at this intersection has great implications for the rest of their lives [8]. Parents may recall the words used by the physician, and his or her ability to interact with them for many years following the death of their child [7]. In addition, the attitudes and skills of the physician may affect the parents’ comfort level with ongoing management and their ability to trust in the care they are given [7]. “While it is clear that stillbirth places women at risk for complicated mourning, many mothers may not experience hospital‐based interventions specifically targeted at their needs; moreover, it is unknown whether or not these interventions, even when experienced, are helpful” [8].

The experiences that parents and families have in the setting of stillbirth care delivery – including at the time of diagnosis, during and after delivery, and in follow‐up care – will be the most cognizant memories of their still babies, so it is of paramount importance that providers are giving appropriate care during this human tragedy. Parents of stillborns wish to have the depth and duration of their grief acknowledged by providers [9]. A 2016 review has confirmed that “providing parents with understandable information, discussing options with them and tailoring care to their individual needs” were common themes [6]. This review has led to clinical and training recommendations that may improve care for bereaved parents.

This type of emerging evidence illustrates that compassionate care, specifically designed for care of families experiencing stillbirth, has unique components and that it can be done satisfactorily. In Gold’s comprehensive review of over 6000 perinatal losses, she determined the best and worst practices for providers in this setting based on qualitative evidence. Constant themes emerge in studies of best practice care for stillbirth and neonatal loss to produce the optimal parental experience [7–9]. Best practices include themes related to respect, the provision of easy to understand information and time for processing, attention to the setting of care, creation of memories, appropriate aftercare instructions, and timely referral and follow‐up care [10]. Despite a paucity of evidence of effectiveness, literature suggests that meaningful and appropriate interventions should be employed to improve the psychological well‐being of bereaved parents [11].

There is also emerging evidence describing how providers are affected by stillbirth. There is an understanding that providers experience overlapping responses: the humane feeling of sadness for someone who has experienced a tragedy and, concurrently, the feeling of bearing the weight of professional responsibility for the event [12]. Trinidad and Kelley also give unique insights into the thoughts of providers during this time. Their study highlighted feelings of lack of preparation, inadequacy, and fear of blame. In their qualitative analysis, providers tended to want to find answers, reassure patients of the competence of the team, and generally felt ill‐prepared to move from the role of physician to counselor [9].

Choices for care and delivery

One of the most pertinent and important decisions to be made with the family is a plan for delivery. The delivery choice should be individualized based upon gestational age, maternal diagnosis and condition, obstetric surgeries, and parental desires [13, 14].

A comprehensive review was undertaken in 2015 which addressed the available date to support choices based on gestational age and prior uterine surgery [15]. This paper summarized several protocols for delivery including both dilation and evacuation (D + E) or induction of labor in the second trimester and induction of labor or repeat c‐section in the third trimester. In the second trimester, important parameters such as complications, cost, and grief resolution were examined. Dilation and evacuation is associated with less complication with experienced providers and lower cost, while time to grief resolution was similar with the two methods [15]. Regarding delivery guidelines in the third trimester the authors state, “The ideal management for stillbirths that occur after 28 weeks’ gestation has not been determined; however, cesarean delivery should be avoided unless medically necessary for maternal indications” [15]. American College of Obstetricians and Gynecologists (ACOG) recommends that induction of labor be managed according to usual obstetrical protocols in these cases [14]. Treatment must be tailored individually to women with a prior uterine scar. Both D + E and induction of labor may be acceptable alternatives in the second trimester in these women. In the third trimester, a prior classical incision necessitates a repeat c‐section, but a prior low transverse incision may be managed with induction of labor with a cervical ripening balloon and/or standard Pitocin protocols. Best evidence suggests that thorough counseling regarding risks and benefits of each option is necessary in every case.

Assessment

The evaluation of stillbirth provides important information for grieving families to help with maternal care as well as guide the management of future pregnancies [13, 14]. The purpose of the evaluation is to identify a cause of the fetal death as well as any potential contributing factors.

It is understood that currently, the optimal laboratory evaluation of stillbirth is controversial, neither has the most cost‐effective approach been determined [16]. Any useful workup must consider cost as well as potential yield. This is especially valuable in low‐resource settings. A systematic assessment, using the clinical setting as context, is generally understood to be the best approach for determining the cause of death in stillbirth.

There are multiple approaches to the evaluation process of a stillborn. One approach is based in the theory that the most and best information is obtained through a comprehensive evaluation for every still born baby [17]. The institution that utilizes this philosophy and therefore, employs the most systematic and thorough assessments, reports that they find cause in >75% cases [17]. It has been shown that a comprehensive protocol for post‐mortem investigations for stillbirth can reduce the lack of explanation to less than one in seven [18–20].

Despite a sometimes thorough “workup,” defined by Gordijn et al. as “a systematic approach to diagnostic investigation,” many stillbirths are still considered “unexplained” [21]. The specific causes identified and the proportion of “unexplained” stillbirths are directly related to the system used to classify them [22]. The proportion of stillbirths who remain “unexplained” varies in different series from 15% to 75% [22]. It is known that thorough evaluation offers the best outcomes for patients and may aid in prevention of recurrence.

Just as causes of stillbirth differ in the developed vs. developing world, so do the recommendations for basic workup protocols. A workup in the developing world will include: a thorough history, narrative of events leading to delivery, possible identification of maternal comorbid conditions, and time of demise.

In the developed world, the basic workup will be a bit more robust. One example, as published by the American College of Obstetrics and Gynecology, includes: a detailed maternal and family history, fetal physical exam, fetal autopsy, placental pathology, fetal karyotype, and maternal laboratory evaluation. The maternal laboratory evaluation consists of routine prenatal labs, a complete blood count, Kleihauer Betke, human parvovirus B‐19 IgG and IgM, syphilis, lupus anticoagulant, anticardiolipin antibodies, thyroid‐stimulating hormone, and antibody, glucose, and toxicology screening [14]. In special cases, a thrombophilia workup may be considered [14, 16, 23–25].

Studies show that the tests of most yield are autopsy, pathologic examination of placenta, membranes, and cord, and karyotype [24]. If autopsy is declined, parents should be offered alternatives such as a full external exam by a perinatal pathologist with or without selected biopsies, full external exam with organ‐sparing autopsy, head‐sparing autopsy, magnetic resonance imaging (MRI), or ultrasound [14]. Most pathologic exams will also generally include photographs, x‐rays, and measurements.

Genetic abnormalities account approximately 6–12% of stillbirths [25]. While the recommendation for karyotype still exists from major organizations, it is increasingly being replaced with a recommendation for more sensitive microarray analysis. It has been shown that microarray analysis detects abnormalities in stillbirth samples more often than karyotype analysis. Given this, microarray analysis is more likely than karyotype analysis to provide a genetic diagnosis [26]. Another major advantage of microarray is that samples may be harvested from nonviable tissue. This feature has been proven to be especially valuable in analyses of stillbirths with congenital anomalies or in cases in which karyotype results cannot be obtained [26]. When karyotype is employed, however, the most high yield specimens come from amniotic fluid. It is recommended that amniocentesis to obtain this fluid be undertaken prior to delivery [14].

The optimal evaluation of stillbirth remains controversial. Investigations are still ongoing to determine which combinations of studies and which approaches give the most yield from the perimortem investigation.

The autopsy

Although not all post‐mortem investigations can adequately explain the cause of a stillbirth, in a significant proportion of cases, perinatal autopsies add additional information, rule out possible causes, and can even lead to changes of diagnosis [27].

Autopsy is known to be the single most important test in the determination of cause of a fetal death [23]. It helps to identify gross defects and morphological abnormalities as well as subtle findings that would be missed without it. The information gathered during autopsy helps with counseling for subsequent pregnancies. This single component of the evaluation for stillbirth and has been reported to provide additional important information to in 26–51% of cases [13].

Despite the known importance of autopsy, it is difficult to get parents to agree to one. It is also difficult to consent for it. The best evidence for communication surrounding autopsy suggests that the clinician discussing autopsy will ideally have [10]:

1. An established rapport with the parents
   
2. Detailed knowledge of autopsy procedures
   
3. Good communication skills
   
4. 
   

   Significant clinical experience

   
   

   And will:

   
   
5. Consider cultural or religious beliefs relating to autopsy
   
6. Provide written information about autopsy
   
7. Discuss with the parents:
   
   
   
   •  • The value of an autopsy
     
   •  • Options for full, limited, or stepwise autopsy
     
   •  • Issues related to retained fetal tissues
     
   •  • The possibility that a cause may not be found
     
   •  • Requirement for and cost (if any) related to transfer of the baby to another facility
     
   •  • Cost (if any) to the parents of the autopsy
     
   •  • Appearance of the baby following autopsy
     
   •  • The likely timeframe for results to become available
     
   •  • Arrangements for communicating results (e.g. appointment following results availability).

Communication around autopsy

As helpful as workup may be, communication surrounding workup is difficult, specifically discussions regarding autopsy [28]. A 2013 Cochrane Review by Horey et al. speaks to the inconsistencies often apparent in these situations, “support for parents making decisions about autopsy or other post‐mortem examinations after stillbirth must rely on the ad hoc knowledge and experience of those involved at the time” [29].

The same 2013 review speaks to the lack of data we have regarding communication in this realm. They cite “insufficient evidence from randomized controlled trials that interventions which aim to provide counseling or psychological support to mothers, fathers, or families who have experienced perinatal death” are of any benefit [28]. Similarly, a Cochrane 2008 review could not make any evidence‐based recommendations concerning the effectiveness of interventions for provision of support to families grieving perinatal death [30].

The ACOG Practice Bulletin on Management of Stillbirth states that support should include emotional support and communication of results. The practice bulletin advises consideration of referrals to support personnel such as counselors, clergy, peer support, bereavement counseling, or mental health networks [14]. The 2016 review by Ellis et al. concludes that parents want improved training so that staff can provide tailored discussions and written information to help them make informed decisions about post‐mortem and funeral arrangements [6]. They also conclude that staff should be trained to discuss information regarding post‐mortem and funeral arrangement options with parents in a clear and empathic manner [6].

The umbilical cord

The umbilical cord is a source often “blamed” for a stillbirth, particularly with an otherwise unknown cause. It is known that up to 30% of pregnancies that end in live births are complicated by nuchal cords and true knots [31]. To attribute the cause to cord accident alone, other recognized causes of stillbirth should be excluded through a careful and systematic evaluation. There “should be evidence of cord occlusion and hypoxia on perinatal postmortem examination and histologic examination of the placental and umbilical cord” [32]. ACOG gives further guidelines, requiring “evidence of obstruction or circulatory compromise on umbilical cord examination. In addition, other causes should be excluded” [14].

Many authors suggest very specific criteria that must be met in order to diagnose stillbirth secondary to hypoxia and asphyxia by acute cord compression [33–35]. Parast and co‐workers propose vascular ectasia and thrombosis within the umbilical cord, chorionic plate, or stem villi as minimal histologic criteria suggestive of cord accident [33] For a probable diagnosis, they require the previous findings as well as regional distribution of avascular villi or villi showing stromal karyorrhexis [33]. This study suggested that cord accidents may be implicated wrongly in many cases, but may however be a true cause in a large percentage of stillbirth cases with an “unknown cause.” Given these discrepancies, most investigators believe that cord accident is a potentially preventable cause of stillbirth which deserves more comprehensive investigation [25].