Chapter 38 Bereavement and loss in maternity care
This chapter introduces the reader to issues which those working in the maternity area may face in the event of bereavement or loss. It is hoped that it will help the reader to better cope with the situation and, thus, care for those affected. Throughout the chapter, the assumption is made that care is more effective if based on research or, preferably, evidence.
Introduction
In Western society at the beginning of the twenty-first century, bereavement is inextricably linked with loss through death. In this chapter, to make these concepts more relevant to the midwife, I broaden the focus to include other sources of grief affecting midwifery care. In widening the topic, I reflect the original meaning of ‘bereavement’, which carries connotations of plundering, robbing, snatching or otherwise removing traumatically and without consent. This meaning may appear to conflict with the other part of my title – ‘loss’ – also widely used in this context. Such inconsistency is fallacious because, although bereavement may involve ‘taking’ in a number of ways, the unspoken hopes and expectations invested in the one who is lost remain irretrievable.
In many ways, loss in childbearing is unique. This uniqueness is due to the awful contrast between the sorrow of death and the mystical joy of new life. Additionally, there is the cruel paradox of the ‘juxtaposition’ of birth and death (Howarth 2001, p 435); we often assume that these events are separated by a lifetime and the experience becomes incomprehensible when they become unified (Bourne 1968). Although any childbearing loss is unique, the uniqueness of both the individual’s experience and the phenomenon itself must be contrasted with the frequency with which ‘lesser’ losses happen during childbearing. Such lesser losses include the parent’s loss of their previous independence, the woman’s loss of her special relationship with her fetus at birth, or the family’s loss of the expectation of a perfect baby when they recognize that the actual baby is all too real.
In this chapter, I focus on the reactions of the woman losing a baby and her care by the midwife. The midwife has a responsibility to draw on her theoretical knowledge, which, as in any care, should be based on the best research evidence. Such knowledge is utilized in skilled care of the woman to facilitate adjustment to these greater and lesser losses. Thus, as well as losing a baby through death, I consider other childbearing-related loss.
Grief and loss
Grief, like death and other fundamentally important matters, is a fact of life. It is something that human beings will invariably meet in some form, sometimes at an early age. In spite of its universality, a woman in a developed country who experiences loss in childbearing may be young enough not to have previously encountered grief due to death. This is another reason for the uniqueness of childbearing loss.
Attachment
Limited understanding of mother–baby attachment, sometimes known as ‘bonding’, long prevented midwives and others from recognizing the significance of perinatal loss. The strength of the developing relationship between the woman and her fetus emerged in a research project involving bereaved mothers (Kennell et al 1970). This relationship develops with feeling movements and experiencing pregnancy, including investigations, such as ultrasound scans. Ordinarily attachment continues to develop beyond the birth (Bowlby 1997). The development of attachment during pregnancy means, however, that should the relationship not continue it must be ended, just like any parting. Thus, the reality of the mother–baby relationship must be recognized before the loss can be accepted. These processes are crucial to initiating healthy grieving.
Grief
Through grieving we adjust to the more serious as well as the lesser losses that confront us throughout life. Healthy grief means that we can move forward, although probably not directly, from the initial distraught hopelessness. We eventually achieve some degree of resolution, which permits ordinary functioning much of the time; in the process we may even learn something about ourselves and the resources available to us (Vera 2003).
Although grief may be viewed as a state of apathetic passivity, it is better regarded as a time when the bereaved person actively struggles with the emotional tasks facing her; the term ‘grief work’ describes this struggle (Engel 1961).
The stages of grief through which the person is likely to work have been described in a number of ways, but Kübler-Ross’s (1970) account may be useful. These stages (Box 38.1) are not necessarily negotiated in sequence, but individual variations cause the person to move back and forth between them before achieving some degree of resolution (Kastenbaum 1998).
The initial response to any loss comprises a defence mechanism, which protects from the full impact of the news or realization. This reaction comprises shock or denial, which insulates the bereaved person from the unthinkable reality. This initial response allows ‘breathing space’, during which the person marshals their emotional resources; these facilitate coping with the impending realization.
Denial soon ceases to work and awareness of the reality of loss gradually dawns. Awareness brings powerful emotional reactions, together with their physical manifestations. Feelings of sorrow appear but other, less acceptable, emotions may simultaneously overwhelm the bereaved person; such emotions include guilt and dissatisfaction, as well as compulsive searching and, worryingly, anger. Realization dawns in waves as the bereaved person tries coping strategies to ‘bargain’ with herself to delay accepting reality.
When such fruitless strategies are exhausted, the despair of full realization materializes, bringing apathy and poor concentration as well as bodily changes. At this point in grief, the bereaved person may show anxiety and physical symptoms, typical of depression.
After the loss has eventually been accepted, it becomes integrated into the person’s life. As mentioned already, this process is not straightforward and may involve slow progress and many setbacks, featuring oscillation and hesitation. Although the person may never ‘get over’ the loss, it should eventually be integrated into their life. This ultimate degree of ‘resolution’ is recognizable in the bereaved person’s contemplation with equanimity the strengths, and weaknesses, of the lost relationship.
Significance
Healthy grieving matters. This is because it contributes to the resumption of balance or homeostasis in the life of the bereaved person. Grief crucially helps people recover from the wounds that the greater and lesser losses of life inflict. The hazards of being unable to grieve healthily have long been recognized in emotional terms, but research reveals the association between perinatal loss and the woman’s physical illness (Ney et al 1994). This research suggests the woman’s need for support, regardless of the nature of the loss or the extent to which it is recognized, or her grief sanctioned, by society.
Culture
I have described a general picture of healthy grieving, and mentioned individual variation, which is common to people of different ethnic backgrounds (Katbamna 2000). It is necessary to emphasize that the manifestations of grief, and the accompanying mourning rituals, vary even more. These variations are influenced by many factors. Cecil (1996) shows the massive differences between ethnic groups in their attitudes towards loss in childbearing. A midwife encounters difficulty accepting the different attitudes to loss in women of cultures other than her own (Mander 2006). Whether midwives are able to work through such feelings, to support women with different attitudes, is uncertain.
Closely bound up with culture, and certainly influencing mourning, is the grieving person’s religious orientation or lack thereof. These aspects, however, may be difficult to separate from social class and prevalent societal attitudes.
Despite huge variations in its manifestation, the underlying purpose of mourning is universal. It establishes support for those closely affected, by strengthening links between those remaining. In perinatal loss the midwife initially provides this support. The role of the midwife is to be with the woman when she begins to realize the extent of her loss. The midwife aims to prevent any interference with the woman’s healthy initiation of grieving.
Forms of loss
The terms ‘loss’ and ‘bereavement’ may be applied to a wide range of experiences, which vary hugely in severity and effects (Despelder & Strickland 2001). We must be careful, however, to avoid making assumptions about the meaning of loss to a particular person. It is difficult, even impossible, for anybody else to understand the significance of a pregnancy or a baby to another person. This is because childbearing carries with it a vast range of profound feelings, which includes unspoken hopes and expectations based on personal and cultural values. We should accept that grief in childbearing, like pain, ‘is what the person experiencing it says it is’ (McCaffery 1979).
I mention here some situations in which we may encounter grief. Some situations of childbearing grief are not included here and some of the situations listed here do not invariably engender grief.
Perinatal loss
When loss in childbearing is mentioned, loss perinatally comes quickly to mind. This includes stillborn babies and babies dying in the first week.
Attempts have been made to compare the severity of grief of loss at different stages, perhaps to demonstrate that certain women deserve more sympathy. A study investigating this point, however, showed no significant differences in the grief response between mothers losing a baby by miscarriage, stillbirth or neonatal death (Peppers & Knapp 1980). This study emphasizes the crucial role of the developing mother–baby relationship – the understanding of which has facilitated changes in care.
Stillbirth
The mother’s long-term recovery from stillbirth was the subject of a retrospective Swedish study. Rådestad and colleagues (1996a) compared the recovery of 380 women who had given birth to a stillborn baby with 379 women who had a healthy child. The 84% response rate shows the mothers’ enthusiasm to participate in this study. These researchers found that the mother made a better recovery if she could decide how long to keep her baby with her after the birth and if she could keep mementoes of the birth. The mother whose recovery was more difficult was the one where the birth of the baby was delayed after realization of fetal demise. Clearly, these findings have important implications for midwifery care (see the section on The mother, below). Additionally, the researchers discuss the ‘known’ stillbirth, when the mother realizes in advance of labour that her baby has died, previously termed ‘intrauterine death’ or ‘IUD’. Alternatively, the loss may be unexpected. While avoiding any comparison of the two mothers’ grief, it is understandable that the mother who knows that she is carrying a dead baby bears a particular emotional burden. This burden, compounded by maceration changing the baby’s appearance, may impede grieving.
Early neonatal death
Grieving the loss of a baby born alive who dies, may be facilitated by three factors. The first is that the mother will have seen and held her real live baby; giving her a genuine memory of her experience. Second, there is the legal requirement that a baby who dies neonatally must have both their birth and death registered, providing written evidence of the baby having lived. Third is the investment of staff in their care of this dying baby, which increases the likelihood of effective support for the parents (Singg 2003).
Accidental loss in early pregnancy: miscarriage
Early pregnancy loss may be due to a number of pathological processes, such as ectopic pregnancy or spontaneous abortion. The word ‘abortion’ is avoided in this context, because it carries connotations of deliberate interference, which are unacceptable to a grieving mother. The term ‘miscarriage’ is preferable, to include all accidental losses. The grief of miscarriage has been ignored in the past, largely owing to its frequency. This has been estimated as 31% of pregnancies (Bansen & Stevens 1992), though the figure may be higher (Oakley et al 1990).
Understanding the woman’s experience of miscarriage was sought through a qualitative research project (Bansen & Stevens 1992). Among the 10 mothers whom they interviewed 2–5 months after miscarriage, these researchers identified profound grief; this was associated with anger that their bodies had allowed them to miscarry, and anxiety about future childbearing. Far from being an insignificant event, these mothers were so ill during the miscarriage that they feared for their lives. Although each mother found reassurance in the conception of the pregnancy that was lost, each came to doubt her own fertility. As in other forms of loss, each mother found difficulty in locating support and encountered comments that denigrated the significance of her loss.
It may be necessary to seek the cause of a woman’s miscarriage, especially if it happens repeatedly. Although miscarriage has been linked with stressful life events, Nelson and colleagues found no link between psychosocial stress and miscarriage (2003).
The former lack of recognition of miscarriage is now being addressed, and women are encouraged to create their own rituals to assist their grieving. Brin (2004) shows the helpful nature of a religious service, of photographs or of communicating sorrow through writing a poem or letter.
Infertility
The grief associated with involuntary infertility is less focused than that experienced when grieving for a particular person and has been termed ‘genetic death’ (Crawshaw 1995). In this situation the couple grieve for the hopes and expectations integral to the conception of a baby. Realization of their infertility, and the grief it brings, is aggravated by the widespread assumption that conception is easy. This is sufficiently prevalent for the emphasis, in society generally and healthcare particularly, to be on the prevention of conception. The complex investigations and prolonged treatment for infertility result in emotions comparable with a ‘roller-coaster’ of hope and despair.
As with any grief, the couple in the infertile relationship grieve differently, engendering tensions. Being told the diagnosis or cause of their infertility resolves some uncertainty about their predicament, but it raises other difficulties. These include the problems of one partner being ‘labelled’ infertile and, hence, being blamed for the couple’s difficulty. A complex spiral of blame and recrimination escalates to damage what is already a vulnerable relationship. Obviously, counselling an infertile couple differs markedly from counselling those bereaved through death.
Relinquishment for adoption
Although long accepted that relinquishment is followed by grief (Sorosky et al 1984) the view still persists that, because relinquishment is voluntary, grief is unlikely (Mander 1995). Each mother in my study was clear that her relinquishment was definitely involuntary and that she had no alternative but to relinquish her baby. These mothers really were ‘bereaved’ in the original sense (see Introduction, p 727).
The grief of relinquishment is crucially different from grief following death. First, after relinquishment the grief is delayed. This is partly because of the woman’s lifestyle at the time and partly because of the secrecy imposed on the woman who does not mother her baby as is usual. Secondly, the grief of relinquishment is unable to be resolved in the short or medium term. This is because, ordinarily, the acceptance of loss is fundamental to resolving grief. After relinquishment, such acceptance is impossible due to the likelihood that the one who was relinquished will make contact when legally able. Being reunited with the relinquished one was fundamentally important to the mothers I interviewed. ‘Rosa’s’ words reflect what many mothers said: ‘I’d be delighted if she would turn up on the doorstep’.
Termination of pregnancy (TOP)
Grief associated with termination of an uncomplicated pregnancy is problematic and for this reason it tends not to be included in the research-based literature on grief (Bewley 1993). The experience of grief following TOP for fetal abnormality and of guilt following TOP do, however, tend to be recognized and accepted. In view of the frequency with which TOP happens and the grief engendered, this deserves more attention.
TOP for fetal abnormality (TFA)
The package of investigations that has become known as ‘prenatal diagnosis’ may ultimately lead to the decision to undergo TFA. Although it may be assumed that the mother’s reaction is solely one of relief at avoiding giving birth to a baby with a disability, Iles (1989) suggests several reasons for this mother experiencing conflicting emotions, which impede her grieving:
Interventions have been introduced to facilitate the grieving of the mother who has undergone TFA. These may involve counselling and the creation of memories, as are attempted in other forms of childbearing loss (see the section on The baby, below). A randomized controlled trial to study the effectiveness of psychotherapeutic counselling in such mothers with no other risk factors was undertaken by Lilford et al (1994). This study suggested that bereavement counselling makes no difference to the difficulty or duration of grieving. Additionally, the researchers concluded that mothers attending for counselling would probably have resolved their grief more satisfactorily than the other group anyway.
TOP for other reasons
The non-recognition of grief associated with TOP may be partly because the mother who has her pregnancy ended may be considered ‘undeserving’ of the luxury of grief. Further, this may be aggravated by her being blamed for her situation (Hey 1996). Research on the psychological sequelae of TOP has focused on the guilt of having decided to end the pregnancy, as opposed to grief reactions; it may be that this focus is associated with the acrimonious abortion debate in some countries. Thus, the grief and depression, presenting as tearfulness were found to be normal after a termination of pregnancy (Wahlberg 2006). Perhaps these reactions could be prevented by counselling before, as well as after, the TOP.
The baby with a disability
For various reasons a baby may be born with a disability, which may or may not be expected. Disabilities vary hugely in their severity and in their implications for the baby. The mother may have to adjust to the possibility of her baby dying, but many conditions will permit the continuation of a healthy life.
The mother’s reaction to the birth of a baby with a disability will involve some grief. This is particularly true if the condition was unexpected, as the mother must grieve for her expected baby before relating to her real baby. The mother may be shocked to find herself thinking that her baby might be better off not surviving (Lewis & Bourne 1989). Although the mother may be reassured that such thoughts are not unique, she may nevertheless find it difficult to complete her grieving.
If a baby is born with an unexpected disability, the problem of breaking the news emerges. There are no easy answers to how this can be done to avoid trauma, but clear, effective and honest communication is crucial (Farrell et al 2001).
The ‘inside baby’
It may be hard to understand that, even in uncomplicated, healthy childbearing, grief may feature. This is because, in spite of obstetric technology, the mother is unable to see her baby before the birth; inevitably the real baby will differ from the one whom she came to love during pregnancy. These differences are likely to be minor, such as hair colour or crying behaviour. Lewis (1979) coined the term ‘inside baby’ to denote the one she came to love during pregnancy and who was perfect. The ‘outside baby’ is the real one, for whom she will care and who may have some imperfections, such as having the wrong hair colour. Clearly the mother may have a few moments of regret, during which she grieves the loss of her fantasy ‘inside’ baby, while at the same time beginning her relationship with her real baby.
The mother’s birth experience
A further form of loss, over which the mother may need to grieve, is her loss of her anticipated birth experience. If she was hoping for an uncomplicated birth, even some of the more common interventions may leave her with a sense of failure (Green & Baston 2003). Thus, like the woman grieving her ‘inside baby’, even though all may appear satisfactory this disappointed mother will have some grief work to complete.
The midwife’s experience
The emotional reaction which will be experienced by the midwife may come as a surprise. As a professional person, she may be taken aback by the strength and complexity of her feelings when caring for a bereaved mother. This aspect, while still under-researched, has begun to be opened up to debate (Box 38.2).
This is a summary of feelings and thoughts when I discovered an intrauterine death at 41 weeks’ gestation. The woman involved had been admitted for induction and neither of us were prepared for this.
My heart literally sank when on initial palpation her stomach felt cold and then the monitor did not detect the heart beat (I had just used the machine earlier). I knew although it would be difficult that I had to try and prepare her. I stayed later to try and give some continuity of care and support for her and her husband. After the scan confirmed the death I hugged her and her husband and cried with them. After this happened, I had a day off work with a severe migraine caused by stress. I felt very nervous and sick about going back to work, this was compounded when I discovered that the woman had been admitted to Intensive Care and was very ill. However, I did go back to work, visited the woman and sat holding her hand. We talked about her sadness and she said she had been worried about me leaving work late and wondered how I had coped getting home and facing my two children. I couldn’t believe that she was concerned about me! She remembered every word I had said to her and praised my honesty. I had told her before the scan that I was sure that the baby had not survived. Two weeks later I attended the funeral in order to seek closure and to demonstrate my sympathy and sadness for the parents.
I have been a midwife for over 12 years and this has NEVER happened to me before, The whole event was very traumatic and upsetting for me. Some colleagues told me not to be upset, cry and/or get involved, but this was ineffective advice. I was so determined that my experience should not be in vain that I wrote this reflective piece. In total I have experienced the loss of over nine friends and relatives including my parents when I was fairly young. However, nothing can prepare someone (even a professional) for discovering that a baby has died and having to prepare the parents for this. Without the love and support of my family, friends and colleagues I would not have coped. As healthcare professionals we should be empathic and display understanding towards our colleagues in similar situations.
As Rosemary Mander (2004b) writes in ‘When the professional gets personal’:
for professional staff who provide effective care, there is likely to be a personal cost. These are the ‘costs of caring’, which may be regarded as the negative side of engaging with patients and clients and with one’s work.
The whole experience will have a huge effect on my practice in various ways. I will encourage midwives to be honest with the clients. This will ensure that words are carefully chosen and also sensitively put, because they will be clearly remembered in years to come. I will not try to smooth over colleagues’ feelings when they are involved in issues like this.
I am also going to liaise with the Local Supervising Authority to look at guidance for other midwives in situations like this. The success of the ‘Birth Afterthoughts Service’ within the Trust has led me to identify the need for a service for midwives dealing with bereavement and perhaps morbidity as well. Therefore, as a supervisor of midwives I aim to promote separate sessions for midwives – even if the midwife says she is unaffected. This will not be blame-based but will simply allow the members of staff to come to terms with their emotions and feelings by helping them to move on in a positive way.
To summarize, writing about this episode has been a catharsis for me and hopefully my experience will have a positive outcome for other staff who find themselves in the same sad and extremely difficult situation, and therefore benefit the parents as well.
Care
In considering the care that midwives provide in the event of loss, there are difficulties in deciding where to begin. Thus, I have organized this section by focusing first on those who are involved or affected and then on other crucial issues. From this material will emerge the principles of our care in this situation. While recognizing the artificiality of distinguishing care for individuals in this complex situation, this approach may help us to consider the different needs among people affected by a single event.
The baby
It is particularly hard to separate the care of the baby from the care of those who are grieving, because much of our care comprises the creation of memories of the baby, which will facilitate the grieving (Box 38.3).
We may think of the care of the baby beginning before the birth by considering the cot in the labour room (Mander 2006). Although the cot may cause the staff some discomfort, it reminds all concerned of the reality of the baby. If possible, that is if the baby’s demise is known, the midwife discusses with the parents prior to the birth the contact which will be made with the baby. This contact may take any of a number of forms, beginning with just a sight of the wrapped baby. Contact with the baby has been said to resolve some of the confusion surrounding the birth. The effects of such care have been called into question, though (Hughes et al 1999).
The midwife faces the quandary of whether, and how much, she will encourage the mother to make contact with her baby, drawing on her knowledge of its beneficial effect on grief (Mander 2006). This quandary is difficult, but midwives tend to be overcautious in encouraging the mother to make contact with her baby. This was an important finding from a study of 380 mothers who had experienced perinatal loss (Rådestad et al 1996b). These researchers found that one-third of the mothers would have appreciated more encouragement to make contact with their babies.
The mother may choose to have considerable contact with her baby, perhaps keeping the baby with her for some time. During this time, the mother may wish to have her baby baptized which, as well as its religious significance, emphasizes the reality of the baby. This simple act, which may be undertaken by the midwife, additionally presents an opportunity to name the baby. The mother may also during this time have other opportunities to create memories of her experience; these include doing some of the things a mother ordinarily does for a baby, such as bathing and dressing him or her. Whether or not the mother chooses to make contact with her baby immediately, it is usual to collect certain mementoes at the time of the birth, such as a lock of hair, a footprint or photographs. If the mother chooses to make no contact at the birth she may later ask for these mementoes. Taking photographs of a suitable quality may present a challenge to the midwife who is not skilled in using a camera, giving rise to dissatisfaction (Rådestad et al 1996b). Figure 38.1 shows the sensitive way in which a photograph may be used to help create memories of the birth.
In the hope of preventing a future loss, the parents may be advised that the baby should have a post mortem examination. This raises difficult issues for parents, who may consider that their baby has already suffered enough. In the UK, there are guidelines providing information for the parents prior to seeking their consent for the post mortem. These guidelines aim to prevent certain abuses, which have previously caused anguish to some bereaved parents (Dimond 2001, RCP 2000).
The funeral serves a multiplicity of purposes, including a demonstration of general support as well as establishing the reality of the loss. A young woman with no experience of death has difficulty imagining how such a ritual could ever be beneficial. She may be helped, though, by being reminded how cemetery and crematorium staff are sensitive to the need to provide a suitable ceremony and a congenial environment in which the child may subsequently be remembered (Kohner 1995). In some situations, such as early miscarriage, a funeral might not be appropriate. The mother may find that an impromptu service is helpful near the time of her loss or, later, she may create her own memorial by writing a letter to her lost baby or by planting a tree.
The mother
Much of the midwife’s care of the grieving mother comprises helping her to make some sense of the incomprehensible experience that has happened to her. As mentioned already, the mother may need help to recognize that she has given birth, even though she no longer has that baby. Integral to this is assisting her realization that she is a mother, which is achieved through midwifery care.
The mother may start to make sense of her loss by talking about it. Although this sounds simple enough, ‘opening up’ may present the mother with certain challenges. For example, she may be inexperienced and uncomfortable in talking about such profound feelings. Further, she may have difficulty finding a suitable and willing listener at the precise time when she feels ready. The problem of her finding a listener was identified in a research project showing that senior hospital staff appear too busy, and other staff insufficiently experienced, for her to unburden herself. Family members, who might be able to listen, have their own difficulties to face, making them unreceptive to the mother’s needs (Rajan 1994).
In a situation of loss, any of us may feel that our control over our lives is slipping away. Such feelings of losing control are exacerbated when the loss involves a physiological process such as childbearing, which many people achieve successfully and effortlessly. Midwives should be able to help the mother to retain some degree of control. They can do this is by giving her accurate information about the choices open to her and on which she is able to base her decision-making. In this way, the midwife may be able to empower the woman and the two may form a partnership together.
The reality of the grieving mother’s control over her care was the subject of Gohlish’s research (1985). She interviewed 15 mothers of stillborn babies and asked them to identify the ‘nursing’ behaviours that they considered most helpful. This study showed the importance to the grieving mother of assuming control over her environment. While the midwife may be keen to share many aspects of control in the form of decision-making with the grieving mother, there are some decisions which are considered unsuitable for the mother to make (Mander 1993). The suitable decisions include the contact that the mother has with her baby; whereas the unsuitable decisions may include the environment in which she is cared for during her hospital stay.
The support offered to the woman was the subject of a systematic review, which found that there is no evidence to indicate the effectiveness of psychological support at this time (Chambers & Chan 2001). A randomized controlled trial by Forrest et al (1982) investigated the effects of support following perinatal loss. The experimental group, comprising 25 bereaved mothers, received ideal supported midwifery care together with counselling; the control group comprised another 25 bereaved mothers who received standard care. Unlike Lilford and colleagues’ more psychotherapeutically oriented study (1994), Forrest found that the well-supported and counselled group recovered from their grief more quickly than the control group. Unfortunately, both studies had difficulty retaining contact with the grieving mothers.
The mother may find helpful support in a number of people, who provide support on a more or less formal basis (Forrest et al 1982). Although we may assume that identifying support is easy, research by Rådestad et al (1996b) has shown that, like finding a suitable listener, locating support may be problematic for the mother. These researchers found that for just over one-quarter of bereaved mothers the support lasted for under 1 month; while for just over another quarter the support was non-existent.
Of particular significance to midwives is the contribution of the lay support and self-help groups. My research showed that midwives are happy to recommend that a mother may find a support group, such as the Stillbirth and Neonatal Death Society (SANDS), helpful (Mander 2006). Unfortunately, little is known about their effectiveness or the experiences of those who attend.
If the loss occurs while the woman is in hospital, her transfer home is crucially important, due to the likelihood of other agencies becoming involved in her care. At this point good inter-agency communication ensures that the woman’s healthy grieving is not jeopardized. In her large qualitative study, Moulder (1998) identified the quality of the help provided for the grieving mother by community agencies. She found that women experience very different standards of care from the different professionals, such as health visitors, general practitioners, community midwives and a range of counselling personnel. Similarly, the 6-week follow-up presents an opportunity, not only to check the woman’s physical recovery, but also to discuss important outstanding issues. These include the couple’s emotional recovery from their loss, the post mortem results (if relevant), any questions arising or remaining, as well as plans for the future. The research by Moulder found that this follow-up visit is often handled appropriately sensitively, in a suitable environment, with appropriate personnel present and adequate time to address matters of concern. Unfortunately, for some of the women the appointment was delayed and staff were condescending.
The family
It is the mother who is clearly most intimately involved with, and affected by, a perinatal loss. To a greater or lesser extent those close to her will share her grief. In this context, as well as conventional family members, I would include a range of non-blood and non-marital relationships.
The father
The effect of the loss on the father may previously have been underestimated (Mander 2004a). This is partly because men tend to show their grief differently from women and partly because they are socialized into providing support for their womenfolk, possibly at the cost of their own emotional well-being. Further, men are stereotypically unlikely to avail themselves of the therapeutic effects of crying and articulating their sorrow. Men’s coping mechanisms may also involve resorting to other less healthy grieving strategies, including returning early to work and using potentially harmful substances such as nicotine or alcohol.
Possibly in association with their different patterns of grieving (Samuelsson et al 2001), the parental relationship is likely to change following perinatal loss. Whether the couple find their relationship strengthened or threatened is unpredictable.
Other family members
Perhaps because they are less closely involved, the grandparents may be disproportionately adversely affected by the loss. This may be due to their inability to protect their children (the bereaved parents) from their painful loss. Inevitably and additionally they will experience their own sense of loss at the threat to the continuity of their family and what it means to them.
The effects of perinatal loss on a sibling may be problematic because of uncertainty about the child’s understanding of the event (Hayslip & Hansson 2003). This difficulty is compounded by the parents’ limited ability to articulate their pain in a suitable form. The parents may seek to solve these problems by ‘protecting’ their other child(ren) from the truth. They little know that ‘protection’ creates a pattern of unhealthy grieving, leaving a family legacy of dysfunctional relationships (Dyregrov 1991).
Whilst midwives tend to assume that the family are the best people to support a grieving mother (Mander 1996), it has been found that family responses may not invariably be healthy or helpful (Kissane & Bloch 1994).
The formal carers
The difficulty that staff face in caring for a grieving mother has been linked with their personal reactions to the loss of a baby (Bourne 1968). This may be part of the reason for the historical neglect of such mothers in particular and this topic in general. Furthermore, the loss of a baby represents all too clearly the failure of the healthcare system, and those who work in it, to give the mother a successful outcome to her pregnancy. The fear of failure in turn engenders a cycle of avoidance, which perpetuates the neglect of the mother.
This vicious cycle has been interrupted so that as the care of the mother has been changed, it is necessary to question whether the care of staff has kept pace (Clarke & Mander 2006). The emotional costs of providing care are now being recognized. Phillips (1996) describes how the devaluation of the emotional component of care is associated with increasing use of the medical model. This devaluation contributes to the increasing recognition of ‘burnout’. The remedy has been identified in a midwifery setting to comprise support in the form of development of ‘team spirit’ (Foster 1996). The need for extra support is particularly important for less experienced staff when providing care for grieving families (Mander 2000). The education of staff for their counselling role is another solution, which is enhanced by supervision for the counsellors. The role of the midwife manager in creating a supportive environment for staff in stressful situations should not be underestimated. The midwife may also be able to locate support in others alongside whom she works, such as the hospital minister or chaplain. Additionally, there are helpful agencies which may be located within or outwith the healthcare system (Stoter 1997).
The involvement of staff in the mother’s grief raises some difficult questions. First there is the helpfulness or otherwise of the midwife sharing the bereaved mother’s tears. Although some midwives are prepared to cry alongside the mother, others feel that crying is ‘unprofessional’ and would not be comfortable shedding even a few tears. The midwives in my research said that, generally, crying was not a problem; but any loss of control that impeded their ability to provide care must be avoided at all costs (Mander 2006). Another difficult decision is whether staff should attend the baby’s funeral. Some of the midwives I interviewed found this helpful and they had not been uncomfortable attending. In some circumstances, however, this would not apply.
Other aspects of care
Not least because of the possibility of impeding grieving, other aspects of care assume greater importance.
Documentation
Record-keeping in this context becomes even more significant. This is because of the importance of communication in ensuring consistent care, which will facilitate the mother’s grieving. Although far from ideal, it may be difficult to avoid this care being provided by a number of personnel. Thus, it is crucial that each midwife should be able to learn from the mother’s records about decisions and actions already taken (Horsfall 2001).
The cremation or burial
The documents required for the ‘disposal’ of the baby differ according to whether the baby was born before or after 24 weeks’ gestation (the current legal limit of viability in the UK), according to whether the baby was born alive or not and according to the part of the UK in which the baby was born (see Ch. 56). If the baby was pre-viable, there is no legal requirement for the baby to be buried or cremated. It is, however, essential to ensure that the baby’s remains are removed according to the mother’s wishes. If she decides not to participate in the removal of the baby’s remains, they should still be removed sensitively (RCOG 2006). A book of remembrance in the maternity unit is available to parents to record their names, their baby’s details and some thoughts about the baby.
For a baby born after 24 weeks, burial or cremation may be organized by the hospital, with the parents’ permission, or by the parents. The local cemetery is likely to have a special plot for babies to be buried individually. This may include the provision of a small tree or rose bush, and a religious or other service may be available. There is also the possibility that the parents may erect a headstone (Mortonhall, Edinburgh City Council, personal communication, 2001).
The statutory documentation is specific to each of the countries of the UK (McDonald 1996). Details of the registration requirements in each of the four countries of the UK are provided on the websites listed in the Useful Addresses at the end of this chapter.
The mother’s choices
At the time of the loss of her baby, as well as her grief work, the mother has certain choices. In terms of how the baby’s remains should be disposed of, the mother should decide whether she would prefer to arrange this privately or allow the hospital to do it. The mother also needs to decide the extent to which she would like to be involved in organizing the funeral service, the blessing or the memorial ceremony (Kohner 1995). In some hospitals, services of remembrance are arranged on a regular basis, and bereaved parents are able to choose whether to attend. As mentioned above, the mother needs appropriate information in order to make decisions about the funeral and the post mortem.
The death of a mother
A form of loss that fortunately happens even less frequently than the death of a baby is when the mother dies; this is usually known as maternal death. In the UK, the rate of maternal death is approximately 1 in 8771 births (Lewis 2004). This means that in a medium-sized maternity unit a mother is likely to die about once every 3 years.
Although the obstetric and epidemiological aspects of maternal death have been well addressed (Edwards 2004; Lewis 2004; Maclean & Neilson 2002), the personal and emotional aspects have been avoided (Mander 2001a). The English language literature has only addressed a family’s experience of loss anecdotally (Dunn 1987). There appears to be, however, no systematic research on the family’s experience of loss, or on the life of the motherless baby. Palliative care principles may be appropriately applied to the care of the childbearing woman with or dying from an incurable condition (Mander & Haroldsdottir 2002). The care of this woman and the implications for her baby and the other members of her family are likely to become increasingly important as some women choose to delay childbearing into their more mature years. The care provided for this childbearing woman has not yet been subjected to serious research attention.
However, the experience of the midwife providing care around the time of the death of a mother has begun to be addressed (Mander 2001b). This research shows the dire implications for the midwife of attending a mother who dies, to the extent that the experience assumes the proportions of a disaster. The midwife’s desperate need for support may be met by midwifery colleagues who either shared her experience or have been through a similar one. The midwife’s family also plays a fundamentally important role in supporting her (Mander 1999).
Conclusion
I have shown in this chapter that, for the midwife’s care of the mother grieving a loss in childbearing to be of a suitably high standard, it requires to be research-based knowledge. Although undertaking such research is not easy for any who are involved, it is only by obtaining and using such knowledge that we are able to give this mother and family care of the highest standard. In this way, the midwife facilitates healthy grieving in the mother, having avoided the impediments which interfere with or complicate her grief and prevent its resolution. In this most human of situations, we must remember that ‘being nice’ is not enough; we need to ensure that our care is based on the strongest evidence available if the woman is eventually to come to terms with her loss.
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England & Wales, http://www.gro.gov.uk/gro/content/stillbirths/.
Scotland Scotland, http://www.gro-scotland.gov.uk/regscot/registering-a-stillbirth.html.
Northern Ireland, http://www.belfastcity.gov.uk/deaths/stillbirths.asp?menuitem=registering-a-stilldeath.
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S.O.F.T.UK – Support Organization for Trisomy 13/18 & Related Disorders, http://www.soft.org.uk/index.htm.
Antenatal Results & Choices (incorporating SATFA) 73 Charlotte Street, London W1P 1LB Tel: 020 7631 0285