Perinatal Loss Support at Time

Perinatal Loss Support at Time of Diagnosis

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

The interventions by health care professionals provided to bereaved parents must be delineated and defined from the beginning of suspected or actual diagnosis to best meet the individual needs of grieving couples. An understanding of both the ubiquity and individuality of the grief process, especially as related to perinatal loss, is a precursor to the formulation of specific nursing strategies designed to meet the unique need 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 until their lives are settled to conceive, few woman and even men anticipate or even acknowledge a pregnancy outcome that is less than optimal. Despite all the latest medical advances and technology, not all pregnancy outcomes produce a healthy child; and unfortunately they occur for many reasons from cardiac genetic defects to idiopathic cases. When they do, the emotional responsibility of caring for the grieving couple and family will depend on how the nurses react and handle the situation. How can the nurse's best be prepared for these challenging situations and tasks? The health care system and care providers need to be knowledgeable in the bereavement care so they are able to counsel and educate parents through this journey and provide hospice holistic care to meet the unique needs of them and their unborn baby. Palliative Bereavement Care Services can begin as soon as the poor outcome of the news is delivered to the parents. The overall goal is to provide medical and ethical care meeting the needs of the grieving parents as well as providing them with emotional support with empathetic care and this will therefore decrease complicated grief outcomes, resentment, and progression of depression to the mother and family because the patient will realize that they are not traveling this journey of a 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.1 in 2002, fetal death after 20 weeks' gestation and neonatal death was reported at 11.1 per 1000 live births." The work of Armstrong (2007) entitled: "Perinatal Loss and Parental Distress After the Birth of a Healthy Infant" reports a study with the purpose of determining "...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." (Armstrong, 2007)

According to the study of Armstrong of the original 206 parents participating in an earlier prenatal study 74 participated at follow up and these were divided into two groups, one group with a history of perinatal loss and one group with no prior losses. The study was conducted through telephone surveys and interviews and data analyzed through use of descriptive statistics, chi-square tests, t-tests and Pearson correlations. Primary outcome measures used were the Impact of the Event Scale (IES), which is an instrument used in evaluating the ongoing influence of a live event in the past of great stress. Armstrong reports the results of the study 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 the mothers with a history of loss are reported to have "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 depressive symptoms, anxiety, guilt, prolonged grieving and feelings of loss are experienced by parents. Perinatal losses are "traumatic events in the lives of parents and may have long-term consequences for the psychological health of families. The incidence of depressive symptoms, anxiety, guilt, prolonged grieving, and feelings of loss of control experienced by parents increases after perinatal loss." (Armstrong, 2007)

Pregnancies following perinatal loss tend to be stressful for both mothers and fathers. In fact mothers and fathers expecting a child and who have had an experience of perinatal loss often experience increased anxiety and symptoms of depression and 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 continues after the birth" of a healthy child and express feelings of fear that they also would lose the healthy child. While it is unclear as to whether perinatal loss results in depression even after the birth of a healthy child there is evidence that increased psychological stress affects the woman in terms of postpartum depression and results in an affect on the woman's ability to function "as well as on the cognitive and behavioral development of infants whose mothers were diagnosed with this psychopathology. While "Maternal postpartum depression presents substantial adverse consequences for family functioning, partnered relationships, and maternal-infant interactions, depression is stated to be "...recognized and treated in as few as 10% of those affected." (Armstrong, 2007)

Maternal prenatal depression is stated to increase "the risk for the negative effects of this condition the 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) in addition, it is related that "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)

Another problem that has been noted in research is that there is 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 mother and their infants born 12 to 19 months after a perinatal loss, the risk for disturbed attachment relationships were evaluated." (Armstrong, 2007) Findings reveal that 45% of infants "had disorganized attachment relationships with their mothers at 12 months of age. This is stated to have been 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 clear as to 'what level increased psychological distress observed during subsequent pregnancies" is ongoing following the birth of a healthy child. It is important to understand the path that the psychological stress of parents takes following perinatal loss and the nurse is in a unique position to assist with this acquisition of knowledge in their position of "working with expectant parents" and in indentifying those parents that would be at the most risk for ongoing psychological stress.

Armstrong (2007) reports that the aim of the study she reports was two-fold:

1) Determine whether levels of depressive symptoms and continued stress related to the previous loss differ from similar prenatal evaluations; and 2) Investigate differences in depressive symptoms in the postpartum period among parents with and without a history of perinatal loss.

Research questions posed by Armstrong include the following questions:

1) Does the level of depressive symptoms and current stress related to their previous loss differ after the birth of a subsequent healthy infant compared to prenatal assessments for mothers and fathers with a history of prior perinatal loss?

2) Do depressive symptoms differ after birth when comparing mothers and fathers who have experienced prior perinatal loss with those mothers and fathers without such a history? (Armstrong, 2007)

Armstrong reports in her results that while there was only a small sampling in this followup study and issues a caution in terms of generalization of the findings due to interpretation variation that there is a suggestion in the study findings that there is a need for followup on parents who have experienced perinatal loss and then follow with the birth of a healthy child in order to avoid psychological harm for both parents and the healthy newborn child that follows a perinatal loss. Developmental harm is also suggested as an outcome for the healthy newborn child following parent's perinatal loss if the psychological affects of the perinatal loss goes unchecked. Armstrong's findings additionally relate that due to previous research and the influence of perinatal loss on postpartum depression on partnered relationships. Armstrong states that differences in continued psychological stress between mothers and fathers after a subsequent birth is another area requiring further evaluation. Specifically stated is that it is necessary to evaluate "...the strength of partnered relationships during future childbearing experiences is important to identify any potential influence of the loss on couple, as well as family, outcomes. Understanding possible gender differences may help neonatal nurses and other healthcare providers to recognize couples at risk for discord." (2007)

Neonatal nurses are those who work closely with infants and parents and in the best position to make identification of depression and to pose questions about the individuals symptoms including:

1) mood;

2) appetite;

3) energy or fatigue levels;

4) ability to concentrate; and 5) as well the neonatal nurse is in the unique position to counsel with the parents. (Armstrong, 2007)

The healthcare provider should not hold an expectation that parents will offer up this information or ask for assistance but should encourage neonatal nurses to ask questions and to assess the psychological needs of parents experiencing perinatal loss including parents who are becoming parents to a healthy newborn since the impact of perinatal loss is many times ongoing and continues to contribute negatively to the parent's psychological state of mind. Armstrong specifically states that neonatal nurses comprehend the necessity to "...assess adaptation to parenthood and continued psychological distress for both parents in the weeks after birth. Neonatal nurses working with these families should be aware of the potential for continued psychological distress after the birth of a healthy infant and educate parents about this possibility." (2007)

The work of Gold, Dalton, and Schwenk (2007) entitled: "Hospital Care for Patients After Perinatal Death" reports a systematic review of the experiences of parents with hospital care following perinatal loss. The study reports having evaluated in excess of 1,100 articles from 1966 to 2006 in order to identify studies of fetal death occurring the second or third trimester as well as neonatal death during the first month of life. The studies were limited to English studies evaluating care in United States hospitals and those containing direct data or opinions of parents. Results reported by Gold, Dalton and Schwenk (2007) are reported to be compiled in regards to five aspects of care recommended including the following:

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 and Schwenk, 2007)

Gold, Dalton and Schwenk note that before the decade of the 1970s "parents were typically not allowed to see or hold their deceased babies. In the last 30 years, psychology experts have led the way in recommending that parents have more contact with their deceased infants and commemorate the deaths. Several national guidelines have been published with recommendations for hospital care after perinatal or neonatal death.9-11 However, 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." (2007)

Gold, Dalton and Schwenk additionally state that when perinatal loss is diagnosed prior to birth the decision must be made by parents and doctors as to whether to "induce delivery right away, to delay induction for days or weeks or to wait for spontaneous labor."(2007) Another issue described as controversial is where postpartum care should take place following fetal demise. Findings state "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 infant's gestational age. A common theme was that mothers who stayed on a labor and delivery unit described the exposure to healthy infants and mothers as emotionally difficult, but parents moved to general surgical or gynecology units often reported dissatisfaction with care." (2007)

Another issue was the level of pain control during delivery. Findings reported by Gold, Dalton and Schwenk include that studies state findings that holding the infant was "important to parents" and that "46% of parents with second-trimester loss, 86% of parents with third-trimester loss, and 78% of parents with neonatal loss rated holding the baby to be an essential bereavement option.19 a theme across the qualitative studies was that parents who had initially been hesitant to hold their infant later reported that holding had been a good choice and they wished they had held their baby 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." (2007) in addition it is reported that "authors of one key study found that health professionals played a key role in whether or not parents saw or held their infants." (2007) it is stated that presently it is common in the practice of hospitals to photograph infants following death and that these are generally offered to the parents and when parents decline these they are offered one more time and then placed in a file for a number of years. The study reported by Gold, Dalton and Schwenk states findings that "parents overwhelmingly found that having photographs of their infants was important to them, and across all qualitative studies, only parents without photos expressed regrets." (2007) it is also reported that findings include the fact that parents report valuing being offered burial options and that fathers were the parent most likely to discuss these options with hospital staff. Additionally stated as an emerging them from several studies that were qualitative in nature was that parents "sometimes felt they had little control over the infant's disposition after death.. Researchers described parents who had not been given a choice about a funeral, felt the hospital had whisked the infant away, or were unsure what happened to their infant's body." (2007) Gold, Dalton, and Schwenk report that often in the case of perinatal death when the infant dies before or during delivery, the cause is not clear at the time of the event." (2007) Autopsies were agreed upon by 20 to 100% of parents and two studies stated findings that 60-80% of families "were offered the option, but it is unknown whether or not they accepted." (2007) However, it is related that "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, and Schwenk, 2007) Arising from the study conducted by Gold, Dalton, and Schwenk are 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 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 nonclinical photographs of cleaned-up 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 options for burial with both parents when possible, and allow parents to participate in the final decisions. Offer resources for financial support when available.

Ensure autopsy results are provided to parents promptly.

Educate other members of a patient's obstetric team about interventions valued by bereaved parents.

Ask other team members to perform key tasks (such as collecting memorabilia or taking pictures); this is particularly useful if the hospital does not routinely employ the intervention and if the attending physician or midwife makes the request and models sensitive care.(Gold, Dalton, and 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 aim of the study reported by Hughes, Hopper, Turton, and Evans is to make assessment of "whether adherence to these protocols is associated with measurably beneficial effects on the psychological health of mother and next-born child." (2002) Findings in this study state that behaviors promoting contact with the infant that was stillborn "were associated with worse outcome. Women who had held their stillborn infant were more depressed than those who only saw the infant, while those who did not see the infant were least likely to be depressed." (Hughes, Turton, Hopper and Evans, 2002) This study states limitations and as well is unsure of why the study failed to match findings of other studies. Also it is noted that this study was one with relatively small numbers of mothers in the study.

The work of Alexander (2001) entitled: "The One thing you Can Never Take Away: Perinatal Bereavement Photographs" states: "Perinatal bereavement photography has become an accepted practice and is strongly recommended as a standard of care." Additionally stated by Alexander is: "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) Finding reported by Alexander include those as follows:

1) One recurrent theme from the interviews dealt with the parents' memory of the professionals as humans. The human contact of the nurses and physicians was what the bereaved parents remembered best;

2) Based on information gained from these case studies, nurses should be encouraged to standardize and personalize perinatal loss policies and procedures and to incorporate 35-mm photography of stillborn infants and neonatal deaths into those policies. According to the parents interviewed for this article, the consistent practice of taking compassionate and respectful photographs of deceased infants is critical. (Alexander, 2001)

Proposed Solution

The proposed solution in this work is screening via an 'Admission Questionnaire' which is an assessment utilized as initial screening tool to assess patients risk Status for psychosocial depression. The screening tool in the form of the Admission Questionnaire will ask the questions as follows:

Does patient have a social support system?

Assess personal adjustment to the pregnancy

Review a history of previous pregnancies, miscarriages, or abortions

Assess patients current emotional status and history

Discuss with patient regarding if this pregnancy was planned or unwanted

Evaluate the acceptance of this pregnancy

Ask questions regarding substance abuse/drug use or abuse of significant others

Go over employment and education status

Determine if patient has financial and material resources available to them.

A b). To implement strategies for bereaved parents at diagnosis, an established perinatal palliative program needs to be implemented. An interdisciplinary team is necessary, and "team members" need to be contacted immediately:

1.) "The family" (Whoever is important to the mother and father)

2.) Obstetrical Care provider, perinatologist, Labor and Delivery bereavement certified nurses.

3.) Genetics team if indicated

4.) Social worker (on-call for hospital)

5.) Bereavement counselors

6.) Pediatric Care provider, neonatologist, psychosocial counselors

Psychosocial, bereavement, and spiritual support should begin at the time of diagnosis. Soon after diagnosis, interdisciplinary team member should provide a certain amount of information in stages for bereavement parent to grasp the concept.

Provide information about the condition including certainty of diagnosis, potential course, complication/expected symptoms, etiology and potential contributing factors.

Review decision making guidelines and the advance care planning process.

Assess role of spirituality, religion, culture

Determine family values and goals. Assess the parents' hopes and fears. Parents frequently fear that they will be competent to meet their baby's needs.

Review medically and ethnically appropriate treatment options

Assess family and community resources

Discuss decision with merit inclusion in the plan

Health Systems and care providers are supported in providing care suited to the unique needs of each family. Prior to be transferred to labor and delivery from triage, plans should be written accordance to the patient and her family. A birth plan should consist of:

Timing of delivery

Mode of delivery-vaginal / and possible reason for cesarean delivery

Site of delivery-high risk room or operating room and discuss recoveries and the length of time of both vaginal and cesarean delivery.

Fetal monitoring of the premature infant. Yes or No? Intermittent monitoring a possibility? Does family want to know about absence of fetal hear rate or fetal distress?

Who will be in the room: family, medical/nursing providers and interpreters if needed?

Who will care for other sibling if any?

Maternal medications (induction, pain control, and psychosocial)

Who will receive the baby? Who will cut cord? Any special request before viewing the baby?

EDUCATING and SUPPORTING STAFF

Staff should receive education and support and this will be accomplished as follows:

All health care providers will become bereavement certified annually. They will have received an academic grounding and clinical experience in how to support individuals through their grieving process. All training programs should cover basic information on the grieving process and the role of the health care provider in supporting individuals and families.

All staff working on the neonatal intensive care units, maternal and newborn units, and pediatric units as well as ER and recovery rooms need specific instructions on way of supporting and assisting parents who are grieving a perinatal loss. Orientation and in-service education programs should be offered during the day and night shifts to accommodate employee attendance and schedules. Issues should include:

The principles of family-centered care and working with families

The positive components of working with death and dying

The different types of perinatal loss and the potential support roles for health care providers.

The parents' and siblings personal experiences of perinatal loss

Invite parents to the bereavement support class to get a personal-hand look on parents' feedback and to give RN's the validation their support is extremely important in the hospital.

Discuss various practical strategies for helping parents

Mandatory attendance of all RN's to attend Infant-fetal loss support group meeting once a year.

Show staff how to access community resources to share with bereaved parents

Hands on class to practice picture taking, footprint making, and necessary paperwork needed to complete the recovery.

C) Health Care Institutions and agencies should be encouraged to provide forums at regular intervals that allow for staff discussion of issues regarding the care of mothers and parents who have undergone a perinatal loss. For example: rounds, workshops (available day, evening, and night), health care providers who support parents through the grieving process will often require support themselves; Ways of providing such support include:

Create opportunities for health care providers to get together as a group to discuss individual situations, as well as their own feelings and needs.

Offer staff members suggestions as to what to say in situation of loss

Provide a quiet room for staff use

Put on extra staff when a death occurs-often, two nurses are needed

Ensure that staff members have sufficient time to spend with the families

Identify the rooms of families who have suffered a loss, so that all staff members know that a family is grieving before they entered the room

Pair experienced staff with new staff so they can give them guidance and decrease any fears or concerns they might have.

Healing Interventions

Supporting Grief

Supportive interventions-focuses on reassuring parents that their expressions of grief are encouraged and accepted.

Informational interventions-includes providing information about grief and what parents can expect in terms of their own response.

Facilitative interventions-are directed at making the loss real, coordinating care, helping families navigate the legal requirements, and helping them prepare for future.