- Email: [email protected]
Bereavement Support for Women and Their Families after Stillbirth
BEREAVEMENT SUPPORT FOR WOMEN AND THEIR FAMILIES AFTER STILLBIRTH Elias Bartellas, MD, FRCS, FACOG, I John Van Aerde, MD, PhD, FRCPC2 IMemorial University of Newfoundland. St.John·s NL 2Division of Neonatology. Department of Pediatrics. University of Alberta. Edmonton AB
Abstract Objectives: (I) To heighten awareness of the grieving process of the mother and her family experiencing the death of a baby; (2) to offer suggestions to health-care providers of the type of support that will achieve optimal grief resolution. Options: Early. late. or no interventions for women and families who experienced stillbirths. Outcome: Success of health-care providers in preventing. recognizing, and treating psychological problems in the bereaved parents and families, and also in helping these families to build meaningful experiences and positive memories from their loss. Evidence: English-language articles and their references on grief and bereavement after perinatal death, through a search of MEDLlNE, the Cochrane Library, and publications of other national bodies including the Canadian Paediatric Society, and the American College of Obstetricians and Gynecologists. Resume Objectifs : (I) Sensibiliser a la douleur des meres et de leur famille apres Ie deces d'un bebe; (2) offrir quelques suggestions aux professionnels de la sante sur Ie type d'appui moral susceptible de mieux aider ces personnes a surmonter leur affliction. Options : Intervenir rapidement ou plus tard, ou ne pas intervenir, lorsqu'une patiente et sa famille font I'experience de I'accouchement d'un mort-ne. Issue : Le professionnel de la sante reussit a prevenir, a reconnaitre et a traiter les problemes de nature psychologique affectant les parents en deuil et leur famille; iI peut aussi les aider a acquerir une attitude constructive et des souvenirs reconfortants par rapport a cette perte. Evidence : On a fait une recherche, sur MEDLINE et dans la bibliotheque Cochrane, des articles ecrits en anglais faisant reference au deuil apres un deces perinatal; on a aussi consuite les publications de societes professionnelles nationales telles que la Societe canadienne de pediatrie et I'American College of Obstetricians and Gynecologists.
J Obstet
Gynaecol Can 2003;25(2): I 31-8.
KeyWords Fetal death, grief, bereavement, coping Competing interests: None declared. Received on September 13, 2002 Revised and accepted on November 3, 2002
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INTRODUCTION
Perinatal loss, which includes stillbirth, has been shown to be different from other types oflosses. I Grief reactions to the loss of a baby are of the strongest magnitude and the grief may endure permanently. 2 The death of a baby is especially difficult to endure because parents envision an entire lifetime for their baby from the moment of confirmation of the pregnancy, and because their expectations and vision have been built over time. Many women have sonographic pictures of their baby in utero, and know the gender of the baby. Some have even named the baby before it has been born. Many expectant parents have made household arrangements for their baby long before the baby's birth. With the death of their baby, parents grieve for the loss of the baby's anticipated future, and also for the loss of their anticipated parenthood. 3 Health-care providers have the opportunity to play an important role in the healing of bereaved parents with their support, understanding, and warmth during the time surrounding the loss of the baby.4,5 The extent of the sense ofloss by the mother and the other family members will depend on several factors, with the most important being the degree of bonding or attachment developed with the baby up to its death. 6 Parents who were actively trying to conceive may have a different degree of attachment to the baby than those who had an unplanned or unwanted pregnancy? Modern visual and audio technologies such as ultrasound and so no grams contribute to earlier and stronger bonding between the mother and her baby, and enable other members of the family as well to bond with the baby. 8 Other situations that may help develop attachment include feeling the baby's movements, a chorionic villus sampling or amniocentesis, and subsequent ultrasounds and Doppler fetal heart auscultations. It has become part of standard care to provide a caring and empathetic environment that facilitates a mother's and family's acceptance of a perinatal death,9 even though there is a lack of randomized controlled trials to provide evidence that such support or counselling has any effect on the prevention of psychological morbidity or abnormal grieving. 1o This reviewarticle aims to heighten awareness of the grieving process of the mother and the family experiencing the death of a baby, as well FEBRUARY 2003
as to offer suggestions to health-care providers of the type of support that will achieve optimal grief resolution. DEFINITIONS
Different terms are used when referring to the loss of a baby. Defining loss, grief, mourning, and bereavement may facilitate a better understanding of the process and phases involved in experiencing a perinatal loss. Loss is defined as the act or an instance of losing a possession. The possession may be a physical object that is obvious to others, or a symbolic object that may not be recognized by others and that may generate feelings that require processing. 11 Grief, a normal reaction to loss, is defined as a deep or intense sorrow. It involves many changes over time, and its absence may be considered abnormal. Grief is specific to any loss and does not need social recognition or validation byothers. It may be manifested in a psychological, physical, behavioural, or social form. 3,ll Mourning is the public and/or cultural expression of deep sorrow, as a result of losing a loved one, and this may vary among different societies or cultures. It is the process through which the resolution of grief may be accomplished. 2 Bereavement means to be deprived by death. Bereavement refers to the entire process and the ramifications brought about by the loss, by death, of a close relative or friend. Bereavement includes grief reaction and mourning. 3 GRIEF REACTION
Perinatal loss is a high-risk variable for the development of complicated or pathological grieving. 12 Health professionals caring for mothers and &milies who are experiencing the loss of a baby should be &miliar with the process of grief reactions so that they can offer the optimal care and support required during this critical phase. 12,13 Three phases of response to grief reactions of parents who have lost a baby have been described: the avoidance phase, the confrontation phase, and the re-establishment phase. 12 The avoidance phase is the period in which the death is confirmed or when news of the death is received. During this initial phase, parents are usually unable to comprehend what has taken place. 3,14 Common reactions include numbness, shock, bewilderment, denial, disorientation, disorganization, and despair.3 Anger and hostility may be directed at the health-care team, or self-directed, specifically for having failed to do something to avert the loss. 3 The feeling of emotional numbness is usually the initial reaction to a loss and may last from a few hours to a few days.3 The numbness and denial act as a protective mechanism to the persons experiencing the loss. 3 This enables them to take in the new reality more slowly,14 possibly to cope better with the process oflabour in the case of known intrauterine death, and probably also to deal with other pracJOGC
tical issues such as funeral arrangements. In the confrontation phase, the grief is most intense and the reactions to the loss are the most acute. 14 During this phase, the loss has been recognized as being final, and the parents go through extremes in the emotions of sorrow, anger, guilt, blame, and yearning. 14 These reactions are important in helping the process of recovery and resolution from the loss.15 The yearning, referred to above, is an emotional longing to be connected with the one who has died, and acute feelings of separation, longing, and searching for the hoped-for child occur. 16 Yearning is further described as a need to recover that which has been lost. 17 It is during this phase that the parents start asking questions, and seek answers from medical experts, health records, and nowadays, the Internet. The mother may harbour feelings of guilt and blame herself, feeling her baby has died because of something that she might have done or not done, whereas family members may place the blame on the health-care professionals. The obstetrician, family doctor, or midwife caring for the pregnant woman may be going through his or her own grieving process over the loss of the baby, and this may make it difficult to provide the support that the grieving family needs. Finally, the mourners go through the re-establishment phase, in which the intense, uncontrollable sorrow begins to resolve. This phase is also described as a time of acceptance and reorganization. 18 This three-phased process of grief is vital for the parents to be able to accept their loss and to carry on with their lives. The recovery process following the death of a child usually lasts for one or two years, but it can last longer or it may never be complete at all. Parents may experience a series of acute grief reactions, which occur around what would have been important milestones in the child's life, such as birthdays. Some authors have described the existence of a healthy adaptation to the loss of a child, and distinguished adaptation from resolution. In adaptation, the family finds ways to live with the loss, but never forgets it. 2 GRIEF PROCESSES
The grief process has also been described as the 6 Rs, consisting of the following 6 separate but interactive processes 11 ,14,19:
1. Recognize the loss, acknowledge the death, and understand its ramifications. 2. React to the separation of both the primary and resulting secondary losses by going through grief. 3. Recollect and re-experience the deceased and the relationship. 4. Relinquish attachments to the deceased and the old assumptive world. 5. Readjust to move adaptively into the "new world" without forgetting the deceased. 6. Reinvest the freed-up energy in a new life or identity. FEBRUARY 2003
From these 6 Rs, bereaved parents have several mental processes to facilitate healthy mourning after the loss of a child. In certain individuals or situations, however, the processes described above are not adequate to help bring about a timely or complete grief resolution, and affected parents then enter into a complicated or pathological grief process. Such individuals are vulnerable to societal stress and may suffer from depression, have marital problems, or engage in substance abuse. Disenfranchised grief, which happens often in the case of stillbirth, is experienced when the loss is not or cannot be acknowledged openly, mourned publicly, or supported. This situation may happen frequently in the case of stillbirth because the community in general may not recognize that a relationship has already been established between the fetus and the mother or family. Thus the mourning person does not have a recognized right to mourn and hence does not receive support. Several explanations have been offered as to why certain individuals experience disenfranchised grief 1. The relationship is not recognized or is not deemed socially significant. 2. The mourner is not recognized or the mourner's peer group does not support the loss.20 3. The absence of concrete experiences or interactions with the lost baby makes the process of "recollecting" and "re-experiencing" the deceased difficult. 12 SPECIAL CIRCUMSTANCES
Unique circumstances place several groups of parents and family members at an increased risk for a pathological grieving process after fetal loss.
1. PARENTS TERMINATING A PREGNANCY BECAUSE OF THE PRESENCE OF FETAL CONGENITAL MALFORMATIONS OR CHROMOSOMAL ABNORMALITIES
In addition to their grief, these parents may have guilty feelings of being responsible for their baby's abnormality and for terminating the life of their own babyY-23 In general, women and men differ in their grief responses to a fetal loss, but this difference is greater when the loss is the result of a pregnancy termination due to a genetic or a congenital fetal anomaly and, consequently, there are more marital conflicts in this group of parents. 24
2. PARENTS WITH
MULTIPLE GESTATIONS HAVING A STILL-
BIRfH AND A LIVE BIRTH AT THE SAME TIME
This is a highly complex situation that takes away from both the celebrating and grieving process. 25 ,26 Since fetal loss occurs more often with multiple gestations, and since the incidence of multiple gestations has been increasing with the increasing use of assisted reproductive technology, there are presently more parents facing this situation.
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3. SIBLINGS The loss of a brother or sister during the perinatal period may affect the siblings much more than parents assume. Children may have feelings of guilt or fear and may have difficulty in resolving their anxiety by themselves. 27
4. ADOLESCENT PARENTS Although the management of mourning adolescent parents has traditionally been the same as that of adults, with little attention given to their unique experiences, grieving adolescents are in fact more vulnerable to deleterious impacts on their physiological, interpersonal, familial, and social well-being as compared to the adult grieving population. 17 The bereaved adolescent mother who experiences pathological mourning may suffer developmental losses that adversely affect her transition into adulthood. 17 Any mourning parent may have the misfortune to develop "disenfranchised grief," 12,28 but the adolescent group is more likely to fall into this category because society's perception of parental bereavement in this group is typically minimized, as it is assumed that adolescents can replace the deceased baby with another child at a later point in time, and that the adolescent can easily re-enter into the life of a "carefree" adolescent after the baby's death. 29 Hence, the significance or value of the deceased fetus to the adolescent parent is often disregarded by family, peers, school, and society in general. In many instances, the adolescent parents may not inform their own parents about the pregnancy for fear of possible disapproval. When this happens, the adolescent expectant mothers isolate themselves from their own parents, and if they suffer a fetal loss, they do not get the much-needed support from their parents. Mourning adolescent parents, who are less likely to have experienced other major losses in life, and may lack the problem-solving abilities of older parents, are at risk for complicated, unresolved, or pathological mourning. 28
5. LABOUR Women with antepartum intrauterine death may perceive labour to be more painful and more emotionally stressful than do women labouring with a healthy fetus. 30 It is important to consider this when managing the labour and supporting these women throughout the process.
6. OrnER SITUATIONS Kay et aL 3 have described other situations that may place grieving parents at risk for pathological mourning, including: (1) parents with marital problems, social isolation, or a history of a previous poor adjustment; (2) parents who had a significant investment in the pregnancy, such as a pregnancy after a long period of infertility; and (3) mothers who also lost their future fertility as a result of a postpartum hysterectomy for persistent bleeding. 3
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POSTPARTUM ISSUES
Parents are usually prepared for and looking forward to having a healthy baby, possibly breastfeeding, and taking their baby home. Many parents plan to take maternity or paternity leave for an extended period of time. Following the birth of the deceased baby, the mother and family members may be at a loss as to what to do and how to behave with the unexpected situation of having a dead baby. The mother will particularly feel out of place and, with no baby to breastfeed, her breast milk may only be a reminder of her deep loss. Yet she needs to physically recover from giving birth in the way all other women do. Compared to women experiencing live births, women with stillborn babies have a shorter hospital stay.3D While recovering in hospital, the grieving woman needs privacy, support, and understanding. She will want to have the opportunity to rest, talk to her family and friends, and obtain medical care. Having to share a room with other women is an insensitive option, since the sight of other mothers holding or breastfeeding their babies will be an unnecessary and painful exercise for her. After agreeing to an autopsy and/or biopsy for chromosomal analysis, the grieving parents may still have fears about the possibility that their baby may be "hurt" by these procedures or not be treated with respect. 9 They also face the necessity of dealing with the funeral, burial, or cremation arrangements. Parents may be fearful about the appearance of their baby if marked maceration or malformations of the baby were found on ultrasound, but seeing and holding the deceased baby may be of help.3l Sexton and Stephen 32 reported that all bereaved mothers who had delivered macerated or malformed infants, and subsequently saw and held the deceased baby, benefited by having a faster recovery from their loss.32 Women who have experienced a stillbirth are vulnerable to depression and anxiety during subsequent pregnancies and will benefit from interventions to help them through these anxietyfilled pregnancies. 21 The grieving parents may have difficulty taking paid time off work in order to recover from their catastrophe, because of the society's lack of recognition in the form ofbenents or paid leave for parents of a stillborn baby. Lack of financial resources or occupational support will only magnifY the stresses of the griever. 33 Grief is different for different people. The individuals in a couple may experience it in different ways. Often, they cannot synchronize their grieving processes, which may be a source of interpersonal stress. 24 After losing a baby, the quality and quantity of ties between the family members with their social network may be affected profoundly. Some families experience reinforcement of their bonds with the social network, but most suffer permanent losses of relationships with friends, colleagues, or extended family members.34 When fetal loss is the result of termination of the pregnancy due to fetal abnormalities, marital conflicts commonly JOGC
occur during the first 12 months from the time of fetal loss. Couples experiencing marital problems should be offered marital counselling. Separation occurs in up to 12% of couples after a perinatal loss. 24 A detailed explanation about the medical reason for terminating the pregnancy, given to the parents prior to the pregnancy termination, and an explanation abour the pathology or other laboratory reports received after the pregnancy termination may (1) improve the couple's understanding about the situation, (2) prevent guilty feelings in the parents for deciding to end the pregnancy, and (3) help the parents more effectively resolve their grief. Extra precautions should be taken when consoling grieving parents of multiple gestations. Comments such as "you should be happy for not losing the other twin" may be interpreted by the parents as being insensitive and disrespectful of their grief Parents may appreciate having a picture of the two babies together. In a cohort study,21 it was found that vulnerability, depression, and anxiety in the next pregnancy and puerperium were related to the length of time since the stillbirth, with more recently bereaved women at a significantly greater risk than controls. It was suggested to consider advising such women to wait for 12 months before the next conception. 21 Although there are differences of grief intensity and stages in bereavement among couples, mothers and fathers usually recover around the same time. HEALTH-CARE INTERVENTIONS
The goals of the health-care team are to help the family experience a normal grief reaction, to actualize the loss, to acknowledge their grief, to assure the family that their feelings are normal, and to meet the particular needs of each family. Midwives, physicians, nurses, clergy, and social workers all may play significant roles and should be trained to provide the appropriate care to the grieving families. In addition, the effort and understanding of many other individuals and teams, such as medical and nursing students, laboratory staff, diagnostic imaging personnel, psychologists, funeral personnel, close community members, friends, employers, and coworkers, are required. 12,13 Care providers must explore their own attitudes about death and grief from the perspective of their own culture, which include values, beliefs, traditions, and attitudes about health and illness. 5 Hutti 35 has suggested 4 types of interventions to support the bereaved family in a medical setting, which are discussed in the following sections. I. REDUCING THE TRAUMA OF THE HOSPITALIZATION PERIOD
Many actions taken in the labour and birth areas to facilitate the attachment of parents with their infant will become memories for the parents. 5 If fetal intrauterine death is suspected, it is FEBRUARY 2003
important to carry out an ultrasound without delay in order to confirm the status of the baby. In cases where the woman is being examined by a member of a medical team, such as a medical intern, nurse, student, or physician, and where the diagnosis of fetal demise is made, the senior member of the team should be the one to inform the parents. 9 The role the nurses play, however, in the management of the woman and her family during this critical period of losing a baby, should not be underestimated. 36 In most cases, the initial diagnosis of either fetal death or severe congenital fetal abnormalities incompatible with life is done in the ultrasonography room by the technician, who is neither trained nor authorized to manage the pregnant mother. Arrangements should be made, in a timely fashion, that a physician trained in ultrasonography shows and explains the findings on the screen to the woman and is prepared to repeat this demonstration to her and her partner or another family member, since this moment may be the most important component of the parents' bereavement. 9,31 The woman's midwife, family doctor, or obstetrician should be notified accordingly. Unless the woman is in a remote medical facility. it is advisable to obtain an obstetrical and, wherever indicated, a neonatal consultation. 9 The woman should be offered a telephone to notifY and call in family or a friend if she wishes. The obstetrician should explain in a clear way, and without the use of complicated medical jargon, what could have caused the baby's death or abnormalities. 31 After the family has had some time to absorb the shock of the news of the baby's condition and had their questions answered, the health-care professional should offer options for management. 31 This should take place in a timely and unhurried manner, in a private area, and in the presence of the woman's partner or another support person. 9,23It is important to allow the parents to express their emotions and to reassure them that this is appropriate. The family should not be confronted when expressing disappointment, anger, or blame. Compassionate understanding and care will be much appreciated by the family at this moment. 12,37 Care should be taken that women in labour with a demised fetus receive adequate analgesia, in light of research that they may require more than the average labouring woman. 30 After the delivery, and after ensuring that the mother is medically stable and not in physical pain, the family should be allowed time alone with the infant, thereby providing them an opportunity to begin the grieving process. The mother should be encouraged to hold and kiss her baby, without forcing her to do something against her wishes. 3,38 The parents may spend as much time as they wish with their baby, and the health-care team should be available and willing to spend as much time with the family as needed. A pediatrician examining the baby should tell the parents about his or her findings, whether the findings are normal or abnormal. The circumstances surrounding a stillbirth may prevent a mother, who may be under general anaesthesia, from seeing JOGC
and holding her baby immediately. Excessive sedation may make it difficult for her to remember the experience of the delivery and of holding the dead baby. While these situations should be avoided if at all possible, they may occur, and, therefore, it is necessary to have the mother spend enough time with her baby, even if it means several hours after the delivery. Looking at an infant with anomalies from the perspective of an outsider is very different from seeing that infant from the perspective of a loving parent, who more often than not will see the positive features rather than dwell on unusual features. Nevertheless, it is important to prepare the family for what the baby will look like if it is expected to be premature, macerated, or congenitally malformed. By doing so, the parents may be more likely to accept the baby "as is" and have fewer negative impressions from any abnormal characteristics the infant may have. 23 Many of the anomalies can be disguised by dressing or wrapping the baby in a blanket or by clothing the baby.31 The caregiver should be open, honest, and considerate when giving information to parents who experience a perinatal death. 39 The family should also be provided information about religious services such as baptism and funeral arrangements. Spiritual support should be made available and the parents' cultural backgrounds respected. Although the parents may be left alone with the baby, they should not be abandoned. At an appropriate time, they should be told about the need for an autopsy and encouraged to consent. It is helpful for the parents to be told they can name the baby.40 The attitude and behaviour of the medical personnel who are in close proximity to the grieving parents playa very significant role in comforting and supporting them. Health-care providers should be empathetic and acknowledge the loss. They should avoid using platitudes or escaping into medical routines. Table 1 displays some valuable strategies in communicating with the parents. 2. VALIDATING THE LOSS
Validation of the loss is of particular importance in facilitating a healthy grieving process. The need for validation as well as education also requires an accurate assessment of the needs of the family.3 Pictures or mementos, footprints, handprints, locks of hair, or a receiving blanket can all confirm that the pregnancy did exist. Even if families initially do not accept any of the photographs or mementos, many of them would be happy to know that they have the opportunity to take them at a later date if they change their mind. 23 At this stage, privacy for the mother, father, and baby, as a group, is very important. This may mean asking additional family members and friends to give the trio some time alone. However, it may be important that, at some point, relatives or friends be allowed to see the baby upon the parents' approval. Indeed, these individuals can validate the infant's existence and death, thereby acknowledging the parents' loss and their need for grieving. FEBRUARY 2003
TABLE I COMMUNICATING WITH PARENTS FOLLOWING STILLBIRTH39,41
What to Say
What Not to Say
I'm sorry. I wish things had ended differently. I don't know what to say. I feel sad. Or, I'm sad for you. Do you have any questions? We can talk again later.
It's best this way. It could have been worse. Time will heal. You can have more children. It's good your baby died before you got to know him/her well.
What to Do
What Not to Do
Answer questions honestly. Use straightforward language. Be comfortable showing emotions. Listen to the parents and talk about the baby.
Use medical jargon. Argue with parents. Avoid questions.
Allowing a woman to recover in a quiet room in the case room (delivery suite) or in a private room in the maternity ward, and not close to the nursery where newborn babies are being taken care of, will give her the opportunity to rest by eliminating the painful reminders resulting from other women's successful pregnancies. Medical personnel entering her room should be made aware of the grieving mother's condition, thus avoiding inappropriate questions and remarks. This can be achieved by placing a marker like a teddy bear or a flower outside the door. 35 There are already units in Canada where a "bereavement program" is in effect, including a private room, where the delivery of the baby takes place. Parents and other members of the family can stay as long as they wish with the baby, in privacy, until the woman is ready to go home. This birthing room is specially identified, and may have additional features to achieve serenity, and allows the whole family to share their sorrow.
TABLE 2 IMPORTANT ACTIONS TO TAKE REGARDING A PERINATAL DEATHS • Assure parents that it is normal to feel uncomfortable. • Allow parents to spend as much time with their baby as they need. • Offer them repeated opportunities to hold the baby. • Encourage parents to name the baby. • Provide privacy, but do not abandon the parents. • Encourage relatives and friends to see the baby according to the parents' wishes. • Provide mementos to create memories, including photographs. • Ensure that spiritual support is available. • Explain and encourage an autopsy. • Explain options and procedures for memorial services.
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3. MAKING THE LOSS MORE REAL
There are other opportunities for the families to make the loss more real through rituals and remembrances. The families should be given the option of contacting their spiritual leader if they wish to do so. Funeral options and burial or cremation should be discussed with the family at an appropriate time. 2 Memorial services are another way to help families with the healing process. Many hospitals have yearly "remembrance" services for deceased babies, regardless of religious affiliation. Other long-term remembrances may include making a charitable donation or planting a tree or flowers. 35 Table 2 displays a list of suggested actions to take to tty to validate the loss and make the loss more real. 4. COUNSELLING THE FAMILY
Counselling provided to families about the grieving process and emotional expectations is helpful in normalizing feelings and reactions. 35 After discussing the grieving process, it is advisable to offer educational materials to the families for furure review. This can be achieved by the physician, midwife, or nurse, in conjunction with the hospital's bereavement support team. Several Web sites (Table 3) offer useful information for grieving families and their health-care providers, and the continuous increase in their accessibility may make them an important and practical tool in both the immediate and ongoing support for women and families who have lost a baby. FOLLOW - UP OF THE FAMILY
It is of the utmost importance to offer follow-up support and referral for ongoing counselling, with special attention to those at highest risk. 9 Children should be included in the grief support and be reassured that there was nothing that they did that adversely affected the baby. They should be given love and attention and their teachers and close friends should be made FEBRUARY 2003
TABLE 3
WEB SITES ON GRIEF AND BEREAVEMENT I. "An Introduction to Death and Dying:' Available at.
2. Information on grief and bereavement. Available at. 3. Information on bereavement. Available at . 4. Information on coping with the death of a child. Available at . 5. Grief and bereavement support. Available at Ask Jeeves at . 6. Julie's place: A Web site for bereaved siblings. Available at . 7. Mothers in sympathy and support (MISS). Available at . Other useful resources of information and psychological support can be obtained from local or national self-help groups.
aware of the event. The adolescent mother in particular may be vulnerable and in need of ongoing support, and should be counselled and advised against seeking comfort in drugs or engaging in a bad relationship while seeking much-needed love and reassurance. Other parents may also be at risk of resorting to these actions. Parents who had babies with congenital or other malformations should be reassured and told not to blame themselves, but at the same time, they should be given the information they need in order to make their own decision about family planning and future pregnancies. In these cases, a referral to a geneticist may be appropriate. 23 One of the most effective groups for follow-up support is "parents helping parents." These parents who have suffered similar losses meet regularly to share experiences, exchange information, and mostly support one another through difficult and lonely times. Health-care providers should be aware of the availability of such support groups in the community and pass on the information to the grieving parents. When seen by the physician or midwife a few weeks after birth, the families may have questions about how and why their baby died. The health-care provider should make an effort not to make them wait in the waiting area, and allow enough time for the visit. 3 ! The parents should be encouraged to talk about the event and express their feelings and describe how they cope at home or at work. 8,3! They should be updated with accurate information regarding reports of all the tests and studies carried out for determining the cause of death of their baby. They should be offered the opportunity to return for subsequent follow-up visits for a period of at least 3 to 6 months. 42,43 Family doctors should be notified and be kept fully informed about the stillbirth and results of investigations, since their contribution to the recovery of the bereaved parents is of great value. The parents should be offered advice and methods for family planning, and be advised to postpone conception until they feel they are ready for it,44 but parents who have valid lOGC
reasons to consider early conception should be supported. 4 It is very important to counsel parents about risks, if any, in future pregnancies and offer them close monitoring and reassurance throughout their pregnancy. The couple should be offered a referral to the appropriate consultant if they experience difficulty coping with their normal day-to-day activities or if they have marital problems. Working parents, especially mothers, should be given adequate sick leave to give them a good chance to recover from their mourning state and to have some financial support. 6 SUMMARY
Helping parents through a stillbirth experience is an essential part of obstetrical care. When giving bad news, it is important to have both parents or one parent with another support person present, Simple language should be used, and time allowed for listening and answering questions honestly. The best way in which a health-care professional can support a grieving family is to offer a nonjudgmental, deep sense of caring and personal involvement. The parents should be allowed to spend as much time as needed with their deceased child. Health-care staff should create mementos for the parents, such as baby's photographs, ink prints of the baby's palm and sole, clothes or blankets used on the baby, or a lock of the baby's hair. Spiritual support should be made available and the parents' cultural backgrounds respected. The latter is particularly important with regard to autopsy. Follow-up meetings to discuss autopsy results or to address unanswered questions should be arranged. Allow evaluation of and counselling for any type of pathological grieving process. Timing and management of future pregnancies are also important issues that need to be addressed in follow-up meetings. All the interactions need to take place in a quiet and comfortable environment, while avoiding feelings of pressure or urgency. The guidance provided must be individualized and sensitive to the cultural and religious perspectives of the FEBRUARY 2003
grieving family members. Caregivers can help grieving parents to have positive memories of their baby, by giving them a feeling of being cared for in the midst of their pain and grief. ACKN~LEDGEMENTS
The authors gratefully acknowledge Catherine MacKinnon, Chair of the Clinical Practice Obstetrics Committee of the Society of Obstetricians and Gynaecologists of Canada; Joan Crane, Chair of the Maternal-Fetal Medicine Committee of the Society of Obstetricians and Gynaecologists of Canada; and the members of the above committees. REFERENCES I. 2. 3.
4. S. 6. 7.
8. 9. 10.
I I.
12. 13.
14. 15. 16. 17. 18. 19. 20. 21.
Robinson M, Baker L, Nackerud l.The relationship of attachment theory and perinatal loss. Death Stud 1999;23:2S7-70. McGoldrick M, Walsh F.living beyond loss. New York: Norton; 1991. Kay J, Roman B, Schulte HM. Pregnancy loss and the grief process. In:Woods JLE, editor. Loss during pregnancy or in the newborn period. Pitman (NJ):Jannetti Publications; 1997. p. S-36. Leon IG. Perinatal loss: a critique of current hospital practices [review]. Clin Pediatr (Phila) 1992;31 :366-74. Van Aerde J. Guidelines for health care professionals supporting families experiencing a perinatal loss. Paediatr Child Health 200 I;6:469-77. Moulder C. Towards a preliminary framework of understanding pregnancy loss. J Reprod Infant Psychol 1994; 12:6S-7. Greenfield DA, Diamond MP, Decherney AH. Grief reactions following in vitro fertilization treatment. J Psychosomatic Obstet Gynecol 1988;8: 169-74. Black RB. Psychological issues in reproductive genetic testing and pregnancy loss. Fetal Diagn Ther I993;8(suppl I): 164-73. Fox R, Pillai M. Porter H, Gill G.The management of late fetal death: a guide to comprehensive care. Br J Obstet Gynaecol 1997; I04:4-1 O. Chambers HM, Chan FY. Support for women/families after perinatal death (Cochrane Review). In: The Cochrane library, Issue 4 200 I. Oxford: Update Software. Rando TA, A perspective on loss, grief and mourning. In: Rando TA, editor. Treatment of complicated mourning. Champaign (IL): Research Press; 1993. p. 19-77. Rando TA, Parental loss of a child. Champaign (IL): Research Press; 1986. Troyer RE. Saying goodbye: the funeral director's role. In: Woods JR, Woods JLE, editors. Loss during pregnancy or in the newborn period. Pitman (NJ):Jannetti Publications; 1997. p.46S-79. Rando TA, Grieving: how to go on living when someone you love dies. Lexington (MA): Lexington Books; 1988. Kirkley-Best E, Kellner KR. The forgotten grief: a review of the psychology of stillbirth. Am J Orthopsychiatry 1982;S2(3):420--9. Panuthos C, Romeo C. Ended beginnings. Massachusetts: Bergen & Garvey; 1984. Welch KJ, Bergen MB.Adolescent parent mourning reactions associated with stillbirth or neonatal death. Omega I999-2000;40(3):43S-S I. Peppers LG, Knapp RG. How to go on living after the death of a baby. Atlanta (GA): Peachtree; 1985. Rando T. Grief, dying and death: Clinical interventions for caregivers. Champaign (IL): Research Press; 1984. Doka KJ. Disenfranchised grief: recognizing hidden sorrow. Lexington (MA): Lexington Books; 1989. Hughes PM,Turion P, Evans CDH. Stillbirth as risk factor for depression and anxiety in the subsequent pregnancy: cohort study. BMJ 1999;318(7200): 1721-4.
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22. Baram DA, Termination of pregnancy for fetal anomalies. In: Woods JR, Woods jLE, editors. Loss during pregnancy or in the newborn period. Pitman (NJ): Jannetti Publications; 1997. p. 307-30. 23. White-Van Mourik MC, Connor JM, Ferguson-Smith MA, Patient care before and after termination of pregnancy for neural tube defects. Prenat Diagn 1990; 10:497-S0S. 24. Seller M, Barnes C, Ross S, BarbyT, Crowmeadow P. Grief and mid-trimester fetal loss. Prenat Diagn 1993; 13:341-8. 25. De Kline M, Cuisnier M, Kollee L, Bethlehem G, Degrauw F. Guidance after twin and singleton neonatal death. Arch Dis Child I 99S;36:F 12S-F6. 26. Bryan EM. Perinatal bereavement after the loss of one twin. J Perinat Med 1991; 19(5uppll):241-S. 27. American Academy of Pediatrics. The pediatrician and childhood bereavement. Pediatrics 2000; IOS:44S-7. 28. Rando TA, Risks and therapeutic implications associated with death of a child and AIDS-related death. In: Rando TA, editor. Treatment of complicated mourning. Champaign (IL): Research Press; 1993. p. 611-50. 29. Barnickol CA, Fuller H, Shinners B. Helping bereaved adolescent parents. In: Corr CA, McNeill IN, editors. Adolescence and death. New York: Springer; 1988. p. 132-47. 30. Radestad I, Nordin C, Steineck G, Sjogren B. A comparison of women's memories of care during pregnancy, labour and delivery after stillbirth or live birth. Midwifery 1998; 14: I 11-7. 31. Woods JR,Jr. Pregnancy-loss counseling: the challenge to the obstetrician.ln:Woods JR,Woods JLE, editors. Loss during pregnancy or in the newborn period. Pitman (NJ):Jannetti Publications; 1997.p.71-122. 32. Sexton PR, Stephen SB. Postpartum mother's perception of nursing interventions for perinatal grief. Neonatal Netw 1991 ;9(S):47-51. 33. Malacrida C. Complicating mourning: the social economy of perinatal death. Qual Health Res I999;9( 4):S04-19. 34. De Montigny F. Beauder L, Dumas l. A baby has died: the impact of perinatal loss on family networks. J Obstet Gynecol Neonatal Nurs 1999;28: 151-6. 3S. Hutti MH. Perinatal loss: assisting parents to cope. J Emerg Nurs 1988; 14:338-41. 36. Buchman TG, Cassel J, Ray SE,Wax Ml.Who should manage the dying patient? Rescue, shame, and the surgicallCU dilemma.J Am Coli Surg 2002; I94(S):66S-73. 37. Swanson KM. Empirical development of a middle range theory for caring. Nurs Res 1991 ;40(3): 161-6. 38. Spike j. Ethical issues in pregnancy. In: Woods JR,Woods JLE, editors. Loss during pregnancy or in the newborn period. Pittman (NJ):Jannetti Publications; 1997. p. 331-46. 39. Welch ID. Miscarriage, stillbirth or newborn death: starting a healthy grieving process. Neonatal Netw 1991 ;9:S3-7. 40. Becker j, Glinski L, Laxova R. Long-term emotional impact of 2nd trimester pregnancy termination after detection of fetal abnormality. Am J Hum Genet 1984;36: I 22S. 41. Hutti MH. A quick reference table of interventions to assist families to cope with pregnancy loss or neonatal death. Birth I988;S( I):33-S. 42. Black RB. One and six months follow-up of prenatal diagnosis parents who lost pregnancies. Prenat Diagn 1989;9:79S--804. 43. ACOG. Depression in women. Washington (DC): American College of Obstetricians and Gynecologists Technical Bulletin, No. I82;July 1993. 44. Cote-Arsenault D, Mahlangu N.lmpact of perinatal loss on the subsequent pregnancy and self: women's experiences. J Obstet Gynecol Neonatal Nurs 1999;28:274-82.
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Abstract Objectives: (I) To heighten awareness of the grieving process of the mother and her family experiencing the death of a baby; (2) to offer suggestions to health-care providers of the type of support that will achieve optimal grief resolution. Options: Early. late. or no interventions for women and families who experienced stillbirths. Outcome: Success of health-care providers in preventing. recognizing, and treating psychological problems in the bereaved parents and families, and also in helping these families to build meaningful experiences and positive memories from their loss. Evidence: English-language articles and their references on grief and bereavement after perinatal death, through a search of MEDLlNE, the Cochrane Library, and publications of other national bodies including the Canadian Paediatric Society, and the American College of Obstetricians and Gynecologists. Resume Objectifs : (I) Sensibiliser a la douleur des meres et de leur famille apres Ie deces d'un bebe; (2) offrir quelques suggestions aux professionnels de la sante sur Ie type d'appui moral susceptible de mieux aider ces personnes a surmonter leur affliction. Options : Intervenir rapidement ou plus tard, ou ne pas intervenir, lorsqu'une patiente et sa famille font I'experience de I'accouchement d'un mort-ne. Issue : Le professionnel de la sante reussit a prevenir, a reconnaitre et a traiter les problemes de nature psychologique affectant les parents en deuil et leur famille; iI peut aussi les aider a acquerir une attitude constructive et des souvenirs reconfortants par rapport a cette perte. Evidence : On a fait une recherche, sur MEDLINE et dans la bibliotheque Cochrane, des articles ecrits en anglais faisant reference au deuil apres un deces perinatal; on a aussi consuite les publications de societes professionnelles nationales telles que la Societe canadienne de pediatrie et I'American College of Obstetricians and Gynecologists.
J Obstet
Gynaecol Can 2003;25(2): I 31-8.
KeyWords Fetal death, grief, bereavement, coping Competing interests: None declared. Received on September 13, 2002 Revised and accepted on November 3, 2002
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INTRODUCTION
Perinatal loss, which includes stillbirth, has been shown to be different from other types oflosses. I Grief reactions to the loss of a baby are of the strongest magnitude and the grief may endure permanently. 2 The death of a baby is especially difficult to endure because parents envision an entire lifetime for their baby from the moment of confirmation of the pregnancy, and because their expectations and vision have been built over time. Many women have sonographic pictures of their baby in utero, and know the gender of the baby. Some have even named the baby before it has been born. Many expectant parents have made household arrangements for their baby long before the baby's birth. With the death of their baby, parents grieve for the loss of the baby's anticipated future, and also for the loss of their anticipated parenthood. 3 Health-care providers have the opportunity to play an important role in the healing of bereaved parents with their support, understanding, and warmth during the time surrounding the loss of the baby.4,5 The extent of the sense ofloss by the mother and the other family members will depend on several factors, with the most important being the degree of bonding or attachment developed with the baby up to its death. 6 Parents who were actively trying to conceive may have a different degree of attachment to the baby than those who had an unplanned or unwanted pregnancy? Modern visual and audio technologies such as ultrasound and so no grams contribute to earlier and stronger bonding between the mother and her baby, and enable other members of the family as well to bond with the baby. 8 Other situations that may help develop attachment include feeling the baby's movements, a chorionic villus sampling or amniocentesis, and subsequent ultrasounds and Doppler fetal heart auscultations. It has become part of standard care to provide a caring and empathetic environment that facilitates a mother's and family's acceptance of a perinatal death,9 even though there is a lack of randomized controlled trials to provide evidence that such support or counselling has any effect on the prevention of psychological morbidity or abnormal grieving. 1o This reviewarticle aims to heighten awareness of the grieving process of the mother and the family experiencing the death of a baby, as well FEBRUARY 2003
as to offer suggestions to health-care providers of the type of support that will achieve optimal grief resolution. DEFINITIONS
Different terms are used when referring to the loss of a baby. Defining loss, grief, mourning, and bereavement may facilitate a better understanding of the process and phases involved in experiencing a perinatal loss. Loss is defined as the act or an instance of losing a possession. The possession may be a physical object that is obvious to others, or a symbolic object that may not be recognized by others and that may generate feelings that require processing. 11 Grief, a normal reaction to loss, is defined as a deep or intense sorrow. It involves many changes over time, and its absence may be considered abnormal. Grief is specific to any loss and does not need social recognition or validation byothers. It may be manifested in a psychological, physical, behavioural, or social form. 3,ll Mourning is the public and/or cultural expression of deep sorrow, as a result of losing a loved one, and this may vary among different societies or cultures. It is the process through which the resolution of grief may be accomplished. 2 Bereavement means to be deprived by death. Bereavement refers to the entire process and the ramifications brought about by the loss, by death, of a close relative or friend. Bereavement includes grief reaction and mourning. 3 GRIEF REACTION
Perinatal loss is a high-risk variable for the development of complicated or pathological grieving. 12 Health professionals caring for mothers and &milies who are experiencing the loss of a baby should be &miliar with the process of grief reactions so that they can offer the optimal care and support required during this critical phase. 12,13 Three phases of response to grief reactions of parents who have lost a baby have been described: the avoidance phase, the confrontation phase, and the re-establishment phase. 12 The avoidance phase is the period in which the death is confirmed or when news of the death is received. During this initial phase, parents are usually unable to comprehend what has taken place. 3,14 Common reactions include numbness, shock, bewilderment, denial, disorientation, disorganization, and despair.3 Anger and hostility may be directed at the health-care team, or self-directed, specifically for having failed to do something to avert the loss. 3 The feeling of emotional numbness is usually the initial reaction to a loss and may last from a few hours to a few days.3 The numbness and denial act as a protective mechanism to the persons experiencing the loss. 3 This enables them to take in the new reality more slowly,14 possibly to cope better with the process oflabour in the case of known intrauterine death, and probably also to deal with other pracJOGC
tical issues such as funeral arrangements. In the confrontation phase, the grief is most intense and the reactions to the loss are the most acute. 14 During this phase, the loss has been recognized as being final, and the parents go through extremes in the emotions of sorrow, anger, guilt, blame, and yearning. 14 These reactions are important in helping the process of recovery and resolution from the loss.15 The yearning, referred to above, is an emotional longing to be connected with the one who has died, and acute feelings of separation, longing, and searching for the hoped-for child occur. 16 Yearning is further described as a need to recover that which has been lost. 17 It is during this phase that the parents start asking questions, and seek answers from medical experts, health records, and nowadays, the Internet. The mother may harbour feelings of guilt and blame herself, feeling her baby has died because of something that she might have done or not done, whereas family members may place the blame on the health-care professionals. The obstetrician, family doctor, or midwife caring for the pregnant woman may be going through his or her own grieving process over the loss of the baby, and this may make it difficult to provide the support that the grieving family needs. Finally, the mourners go through the re-establishment phase, in which the intense, uncontrollable sorrow begins to resolve. This phase is also described as a time of acceptance and reorganization. 18 This three-phased process of grief is vital for the parents to be able to accept their loss and to carry on with their lives. The recovery process following the death of a child usually lasts for one or two years, but it can last longer or it may never be complete at all. Parents may experience a series of acute grief reactions, which occur around what would have been important milestones in the child's life, such as birthdays. Some authors have described the existence of a healthy adaptation to the loss of a child, and distinguished adaptation from resolution. In adaptation, the family finds ways to live with the loss, but never forgets it. 2 GRIEF PROCESSES
The grief process has also been described as the 6 Rs, consisting of the following 6 separate but interactive processes 11 ,14,19:
1. Recognize the loss, acknowledge the death, and understand its ramifications. 2. React to the separation of both the primary and resulting secondary losses by going through grief. 3. Recollect and re-experience the deceased and the relationship. 4. Relinquish attachments to the deceased and the old assumptive world. 5. Readjust to move adaptively into the "new world" without forgetting the deceased. 6. Reinvest the freed-up energy in a new life or identity. FEBRUARY 2003
From these 6 Rs, bereaved parents have several mental processes to facilitate healthy mourning after the loss of a child. In certain individuals or situations, however, the processes described above are not adequate to help bring about a timely or complete grief resolution, and affected parents then enter into a complicated or pathological grief process. Such individuals are vulnerable to societal stress and may suffer from depression, have marital problems, or engage in substance abuse. Disenfranchised grief, which happens often in the case of stillbirth, is experienced when the loss is not or cannot be acknowledged openly, mourned publicly, or supported. This situation may happen frequently in the case of stillbirth because the community in general may not recognize that a relationship has already been established between the fetus and the mother or family. Thus the mourning person does not have a recognized right to mourn and hence does not receive support. Several explanations have been offered as to why certain individuals experience disenfranchised grief 1. The relationship is not recognized or is not deemed socially significant. 2. The mourner is not recognized or the mourner's peer group does not support the loss.20 3. The absence of concrete experiences or interactions with the lost baby makes the process of "recollecting" and "re-experiencing" the deceased difficult. 12 SPECIAL CIRCUMSTANCES
Unique circumstances place several groups of parents and family members at an increased risk for a pathological grieving process after fetal loss.
1. PARENTS TERMINATING A PREGNANCY BECAUSE OF THE PRESENCE OF FETAL CONGENITAL MALFORMATIONS OR CHROMOSOMAL ABNORMALITIES
In addition to their grief, these parents may have guilty feelings of being responsible for their baby's abnormality and for terminating the life of their own babyY-23 In general, women and men differ in their grief responses to a fetal loss, but this difference is greater when the loss is the result of a pregnancy termination due to a genetic or a congenital fetal anomaly and, consequently, there are more marital conflicts in this group of parents. 24
2. PARENTS WITH
MULTIPLE GESTATIONS HAVING A STILL-
BIRfH AND A LIVE BIRTH AT THE SAME TIME
This is a highly complex situation that takes away from both the celebrating and grieving process. 25 ,26 Since fetal loss occurs more often with multiple gestations, and since the incidence of multiple gestations has been increasing with the increasing use of assisted reproductive technology, there are presently more parents facing this situation.
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3. SIBLINGS The loss of a brother or sister during the perinatal period may affect the siblings much more than parents assume. Children may have feelings of guilt or fear and may have difficulty in resolving their anxiety by themselves. 27
4. ADOLESCENT PARENTS Although the management of mourning adolescent parents has traditionally been the same as that of adults, with little attention given to their unique experiences, grieving adolescents are in fact more vulnerable to deleterious impacts on their physiological, interpersonal, familial, and social well-being as compared to the adult grieving population. 17 The bereaved adolescent mother who experiences pathological mourning may suffer developmental losses that adversely affect her transition into adulthood. 17 Any mourning parent may have the misfortune to develop "disenfranchised grief," 12,28 but the adolescent group is more likely to fall into this category because society's perception of parental bereavement in this group is typically minimized, as it is assumed that adolescents can replace the deceased baby with another child at a later point in time, and that the adolescent can easily re-enter into the life of a "carefree" adolescent after the baby's death. 29 Hence, the significance or value of the deceased fetus to the adolescent parent is often disregarded by family, peers, school, and society in general. In many instances, the adolescent parents may not inform their own parents about the pregnancy for fear of possible disapproval. When this happens, the adolescent expectant mothers isolate themselves from their own parents, and if they suffer a fetal loss, they do not get the much-needed support from their parents. Mourning adolescent parents, who are less likely to have experienced other major losses in life, and may lack the problem-solving abilities of older parents, are at risk for complicated, unresolved, or pathological mourning. 28
5. LABOUR Women with antepartum intrauterine death may perceive labour to be more painful and more emotionally stressful than do women labouring with a healthy fetus. 30 It is important to consider this when managing the labour and supporting these women throughout the process.
6. OrnER SITUATIONS Kay et aL 3 have described other situations that may place grieving parents at risk for pathological mourning, including: (1) parents with marital problems, social isolation, or a history of a previous poor adjustment; (2) parents who had a significant investment in the pregnancy, such as a pregnancy after a long period of infertility; and (3) mothers who also lost their future fertility as a result of a postpartum hysterectomy for persistent bleeding. 3
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POSTPARTUM ISSUES
Parents are usually prepared for and looking forward to having a healthy baby, possibly breastfeeding, and taking their baby home. Many parents plan to take maternity or paternity leave for an extended period of time. Following the birth of the deceased baby, the mother and family members may be at a loss as to what to do and how to behave with the unexpected situation of having a dead baby. The mother will particularly feel out of place and, with no baby to breastfeed, her breast milk may only be a reminder of her deep loss. Yet she needs to physically recover from giving birth in the way all other women do. Compared to women experiencing live births, women with stillborn babies have a shorter hospital stay.3D While recovering in hospital, the grieving woman needs privacy, support, and understanding. She will want to have the opportunity to rest, talk to her family and friends, and obtain medical care. Having to share a room with other women is an insensitive option, since the sight of other mothers holding or breastfeeding their babies will be an unnecessary and painful exercise for her. After agreeing to an autopsy and/or biopsy for chromosomal analysis, the grieving parents may still have fears about the possibility that their baby may be "hurt" by these procedures or not be treated with respect. 9 They also face the necessity of dealing with the funeral, burial, or cremation arrangements. Parents may be fearful about the appearance of their baby if marked maceration or malformations of the baby were found on ultrasound, but seeing and holding the deceased baby may be of help.3l Sexton and Stephen 32 reported that all bereaved mothers who had delivered macerated or malformed infants, and subsequently saw and held the deceased baby, benefited by having a faster recovery from their loss.32 Women who have experienced a stillbirth are vulnerable to depression and anxiety during subsequent pregnancies and will benefit from interventions to help them through these anxietyfilled pregnancies. 21 The grieving parents may have difficulty taking paid time off work in order to recover from their catastrophe, because of the society's lack of recognition in the form ofbenents or paid leave for parents of a stillborn baby. Lack of financial resources or occupational support will only magnifY the stresses of the griever. 33 Grief is different for different people. The individuals in a couple may experience it in different ways. Often, they cannot synchronize their grieving processes, which may be a source of interpersonal stress. 24 After losing a baby, the quality and quantity of ties between the family members with their social network may be affected profoundly. Some families experience reinforcement of their bonds with the social network, but most suffer permanent losses of relationships with friends, colleagues, or extended family members.34 When fetal loss is the result of termination of the pregnancy due to fetal abnormalities, marital conflicts commonly JOGC
occur during the first 12 months from the time of fetal loss. Couples experiencing marital problems should be offered marital counselling. Separation occurs in up to 12% of couples after a perinatal loss. 24 A detailed explanation about the medical reason for terminating the pregnancy, given to the parents prior to the pregnancy termination, and an explanation abour the pathology or other laboratory reports received after the pregnancy termination may (1) improve the couple's understanding about the situation, (2) prevent guilty feelings in the parents for deciding to end the pregnancy, and (3) help the parents more effectively resolve their grief. Extra precautions should be taken when consoling grieving parents of multiple gestations. Comments such as "you should be happy for not losing the other twin" may be interpreted by the parents as being insensitive and disrespectful of their grief Parents may appreciate having a picture of the two babies together. In a cohort study,21 it was found that vulnerability, depression, and anxiety in the next pregnancy and puerperium were related to the length of time since the stillbirth, with more recently bereaved women at a significantly greater risk than controls. It was suggested to consider advising such women to wait for 12 months before the next conception. 21 Although there are differences of grief intensity and stages in bereavement among couples, mothers and fathers usually recover around the same time. HEALTH-CARE INTERVENTIONS
The goals of the health-care team are to help the family experience a normal grief reaction, to actualize the loss, to acknowledge their grief, to assure the family that their feelings are normal, and to meet the particular needs of each family. Midwives, physicians, nurses, clergy, and social workers all may play significant roles and should be trained to provide the appropriate care to the grieving families. In addition, the effort and understanding of many other individuals and teams, such as medical and nursing students, laboratory staff, diagnostic imaging personnel, psychologists, funeral personnel, close community members, friends, employers, and coworkers, are required. 12,13 Care providers must explore their own attitudes about death and grief from the perspective of their own culture, which include values, beliefs, traditions, and attitudes about health and illness. 5 Hutti 35 has suggested 4 types of interventions to support the bereaved family in a medical setting, which are discussed in the following sections. I. REDUCING THE TRAUMA OF THE HOSPITALIZATION PERIOD
Many actions taken in the labour and birth areas to facilitate the attachment of parents with their infant will become memories for the parents. 5 If fetal intrauterine death is suspected, it is FEBRUARY 2003
important to carry out an ultrasound without delay in order to confirm the status of the baby. In cases where the woman is being examined by a member of a medical team, such as a medical intern, nurse, student, or physician, and where the diagnosis of fetal demise is made, the senior member of the team should be the one to inform the parents. 9 The role the nurses play, however, in the management of the woman and her family during this critical period of losing a baby, should not be underestimated. 36 In most cases, the initial diagnosis of either fetal death or severe congenital fetal abnormalities incompatible with life is done in the ultrasonography room by the technician, who is neither trained nor authorized to manage the pregnant mother. Arrangements should be made, in a timely fashion, that a physician trained in ultrasonography shows and explains the findings on the screen to the woman and is prepared to repeat this demonstration to her and her partner or another family member, since this moment may be the most important component of the parents' bereavement. 9,31 The woman's midwife, family doctor, or obstetrician should be notified accordingly. Unless the woman is in a remote medical facility. it is advisable to obtain an obstetrical and, wherever indicated, a neonatal consultation. 9 The woman should be offered a telephone to notifY and call in family or a friend if she wishes. The obstetrician should explain in a clear way, and without the use of complicated medical jargon, what could have caused the baby's death or abnormalities. 31 After the family has had some time to absorb the shock of the news of the baby's condition and had their questions answered, the health-care professional should offer options for management. 31 This should take place in a timely and unhurried manner, in a private area, and in the presence of the woman's partner or another support person. 9,23It is important to allow the parents to express their emotions and to reassure them that this is appropriate. The family should not be confronted when expressing disappointment, anger, or blame. Compassionate understanding and care will be much appreciated by the family at this moment. 12,37 Care should be taken that women in labour with a demised fetus receive adequate analgesia, in light of research that they may require more than the average labouring woman. 30 After the delivery, and after ensuring that the mother is medically stable and not in physical pain, the family should be allowed time alone with the infant, thereby providing them an opportunity to begin the grieving process. The mother should be encouraged to hold and kiss her baby, without forcing her to do something against her wishes. 3,38 The parents may spend as much time as they wish with their baby, and the health-care team should be available and willing to spend as much time with the family as needed. A pediatrician examining the baby should tell the parents about his or her findings, whether the findings are normal or abnormal. The circumstances surrounding a stillbirth may prevent a mother, who may be under general anaesthesia, from seeing JOGC
and holding her baby immediately. Excessive sedation may make it difficult for her to remember the experience of the delivery and of holding the dead baby. While these situations should be avoided if at all possible, they may occur, and, therefore, it is necessary to have the mother spend enough time with her baby, even if it means several hours after the delivery. Looking at an infant with anomalies from the perspective of an outsider is very different from seeing that infant from the perspective of a loving parent, who more often than not will see the positive features rather than dwell on unusual features. Nevertheless, it is important to prepare the family for what the baby will look like if it is expected to be premature, macerated, or congenitally malformed. By doing so, the parents may be more likely to accept the baby "as is" and have fewer negative impressions from any abnormal characteristics the infant may have. 23 Many of the anomalies can be disguised by dressing or wrapping the baby in a blanket or by clothing the baby.31 The caregiver should be open, honest, and considerate when giving information to parents who experience a perinatal death. 39 The family should also be provided information about religious services such as baptism and funeral arrangements. Spiritual support should be made available and the parents' cultural backgrounds respected. Although the parents may be left alone with the baby, they should not be abandoned. At an appropriate time, they should be told about the need for an autopsy and encouraged to consent. It is helpful for the parents to be told they can name the baby.40 The attitude and behaviour of the medical personnel who are in close proximity to the grieving parents playa very significant role in comforting and supporting them. Health-care providers should be empathetic and acknowledge the loss. They should avoid using platitudes or escaping into medical routines. Table 1 displays some valuable strategies in communicating with the parents. 2. VALIDATING THE LOSS
Validation of the loss is of particular importance in facilitating a healthy grieving process. The need for validation as well as education also requires an accurate assessment of the needs of the family.3 Pictures or mementos, footprints, handprints, locks of hair, or a receiving blanket can all confirm that the pregnancy did exist. Even if families initially do not accept any of the photographs or mementos, many of them would be happy to know that they have the opportunity to take them at a later date if they change their mind. 23 At this stage, privacy for the mother, father, and baby, as a group, is very important. This may mean asking additional family members and friends to give the trio some time alone. However, it may be important that, at some point, relatives or friends be allowed to see the baby upon the parents' approval. Indeed, these individuals can validate the infant's existence and death, thereby acknowledging the parents' loss and their need for grieving. FEBRUARY 2003
TABLE I COMMUNICATING WITH PARENTS FOLLOWING STILLBIRTH39,41
What to Say
What Not to Say
I'm sorry. I wish things had ended differently. I don't know what to say. I feel sad. Or, I'm sad for you. Do you have any questions? We can talk again later.
It's best this way. It could have been worse. Time will heal. You can have more children. It's good your baby died before you got to know him/her well.
What to Do
What Not to Do
Answer questions honestly. Use straightforward language. Be comfortable showing emotions. Listen to the parents and talk about the baby.
Use medical jargon. Argue with parents. Avoid questions.
Allowing a woman to recover in a quiet room in the case room (delivery suite) or in a private room in the maternity ward, and not close to the nursery where newborn babies are being taken care of, will give her the opportunity to rest by eliminating the painful reminders resulting from other women's successful pregnancies. Medical personnel entering her room should be made aware of the grieving mother's condition, thus avoiding inappropriate questions and remarks. This can be achieved by placing a marker like a teddy bear or a flower outside the door. 35 There are already units in Canada where a "bereavement program" is in effect, including a private room, where the delivery of the baby takes place. Parents and other members of the family can stay as long as they wish with the baby, in privacy, until the woman is ready to go home. This birthing room is specially identified, and may have additional features to achieve serenity, and allows the whole family to share their sorrow.
TABLE 2 IMPORTANT ACTIONS TO TAKE REGARDING A PERINATAL DEATHS • Assure parents that it is normal to feel uncomfortable. • Allow parents to spend as much time with their baby as they need. • Offer them repeated opportunities to hold the baby. • Encourage parents to name the baby. • Provide privacy, but do not abandon the parents. • Encourage relatives and friends to see the baby according to the parents' wishes. • Provide mementos to create memories, including photographs. • Ensure that spiritual support is available. • Explain and encourage an autopsy. • Explain options and procedures for memorial services.
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3. MAKING THE LOSS MORE REAL
There are other opportunities for the families to make the loss more real through rituals and remembrances. The families should be given the option of contacting their spiritual leader if they wish to do so. Funeral options and burial or cremation should be discussed with the family at an appropriate time. 2 Memorial services are another way to help families with the healing process. Many hospitals have yearly "remembrance" services for deceased babies, regardless of religious affiliation. Other long-term remembrances may include making a charitable donation or planting a tree or flowers. 35 Table 2 displays a list of suggested actions to take to tty to validate the loss and make the loss more real. 4. COUNSELLING THE FAMILY
Counselling provided to families about the grieving process and emotional expectations is helpful in normalizing feelings and reactions. 35 After discussing the grieving process, it is advisable to offer educational materials to the families for furure review. This can be achieved by the physician, midwife, or nurse, in conjunction with the hospital's bereavement support team. Several Web sites (Table 3) offer useful information for grieving families and their health-care providers, and the continuous increase in their accessibility may make them an important and practical tool in both the immediate and ongoing support for women and families who have lost a baby. FOLLOW - UP OF THE FAMILY
It is of the utmost importance to offer follow-up support and referral for ongoing counselling, with special attention to those at highest risk. 9 Children should be included in the grief support and be reassured that there was nothing that they did that adversely affected the baby. They should be given love and attention and their teachers and close friends should be made FEBRUARY 2003
TABLE 3
WEB SITES ON GRIEF AND BEREAVEMENT I. "An Introduction to Death and Dying:' Available at
2. Information on grief and bereavement. Available at
aware of the event. The adolescent mother in particular may be vulnerable and in need of ongoing support, and should be counselled and advised against seeking comfort in drugs or engaging in a bad relationship while seeking much-needed love and reassurance. Other parents may also be at risk of resorting to these actions. Parents who had babies with congenital or other malformations should be reassured and told not to blame themselves, but at the same time, they should be given the information they need in order to make their own decision about family planning and future pregnancies. In these cases, a referral to a geneticist may be appropriate. 23 One of the most effective groups for follow-up support is "parents helping parents." These parents who have suffered similar losses meet regularly to share experiences, exchange information, and mostly support one another through difficult and lonely times. Health-care providers should be aware of the availability of such support groups in the community and pass on the information to the grieving parents. When seen by the physician or midwife a few weeks after birth, the families may have questions about how and why their baby died. The health-care provider should make an effort not to make them wait in the waiting area, and allow enough time for the visit. 3 ! The parents should be encouraged to talk about the event and express their feelings and describe how they cope at home or at work. 8,3! They should be updated with accurate information regarding reports of all the tests and studies carried out for determining the cause of death of their baby. They should be offered the opportunity to return for subsequent follow-up visits for a period of at least 3 to 6 months. 42,43 Family doctors should be notified and be kept fully informed about the stillbirth and results of investigations, since their contribution to the recovery of the bereaved parents is of great value. The parents should be offered advice and methods for family planning, and be advised to postpone conception until they feel they are ready for it,44 but parents who have valid lOGC
reasons to consider early conception should be supported. 4 It is very important to counsel parents about risks, if any, in future pregnancies and offer them close monitoring and reassurance throughout their pregnancy. The couple should be offered a referral to the appropriate consultant if they experience difficulty coping with their normal day-to-day activities or if they have marital problems. Working parents, especially mothers, should be given adequate sick leave to give them a good chance to recover from their mourning state and to have some financial support. 6 SUMMARY
Helping parents through a stillbirth experience is an essential part of obstetrical care. When giving bad news, it is important to have both parents or one parent with another support person present, Simple language should be used, and time allowed for listening and answering questions honestly. The best way in which a health-care professional can support a grieving family is to offer a nonjudgmental, deep sense of caring and personal involvement. The parents should be allowed to spend as much time as needed with their deceased child. Health-care staff should create mementos for the parents, such as baby's photographs, ink prints of the baby's palm and sole, clothes or blankets used on the baby, or a lock of the baby's hair. Spiritual support should be made available and the parents' cultural backgrounds respected. The latter is particularly important with regard to autopsy. Follow-up meetings to discuss autopsy results or to address unanswered questions should be arranged. Allow evaluation of and counselling for any type of pathological grieving process. Timing and management of future pregnancies are also important issues that need to be addressed in follow-up meetings. All the interactions need to take place in a quiet and comfortable environment, while avoiding feelings of pressure or urgency. The guidance provided must be individualized and sensitive to the cultural and religious perspectives of the FEBRUARY 2003
grieving family members. Caregivers can help grieving parents to have positive memories of their baby, by giving them a feeling of being cared for in the midst of their pain and grief. ACKN~LEDGEMENTS
The authors gratefully acknowledge Catherine MacKinnon, Chair of the Clinical Practice Obstetrics Committee of the Society of Obstetricians and Gynaecologists of Canada; Joan Crane, Chair of the Maternal-Fetal Medicine Committee of the Society of Obstetricians and Gynaecologists of Canada; and the members of the above committees. REFERENCES I. 2. 3.
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