Best Practice & Research Clinical Obstetrics and Gynaecology Vol. 21, No. 2, pp. 249e259, 2007 doi:10.1016/j.bpobgyn.2006.11.004 available online at http://www.sciencedirect.com

6 Psychological aspects of perinatal loss William Badenhorst

MBBCh, MRCPsych

Specialist Registrar

Patricia Hughes *

MD, FRCPsych

Professor Division of Mental Health Sciences, Jenner Wing, St George’s University of London, Cranmer Terrace, London SW17 0RE, UK

After perinatal loss, parents experience painful grief. Fathers and mothers show the same pattern of symptoms, but generally mothers’ distress is more intense. Grief should be sympathetically acknowledged by health professionals, and parents should be reassured that their feelings are normal and that recovery may take many months. Intense depression lasting more than 6 months may require psychological treatment. There is some evidence that delaying conception for a year may allow an easier pregnancy psychologically. The common practice of encouraging parents to have contact with a dead infant is not evidence-based and may have adverse effects, including inducing symptoms of post-traumatic stress disorder. A protocol of postnatal followup allows parents to get appropriate information about the loss, including possible problems and timing of another pregnancy. The subsequent pregnancy is stressful, and health professionals should recognize that parents may suffer significant anxiety. Key words: perinatal loss; stillbirth; neonatal death; psychological effects; psychosocial management.

The recognition of perinatal loss as a significant bereavement is relatively new. Until the late 20th century stillbirth and neonatal death were as common in the Western world as they now are in the developing world, and where child death is not unexpected, attitudes to the loss are also different. Parents now anticipate their pregnancies being successful and their children surviving to adult life, and are deeply shocked and distressed by the loss of an expected child.

* Corresponding author. Tel.: þ44 20 8725 5535; Fax: þ44 20 8725 5524. E-mail address: [email protected] (P. Hughes). 1521-6934/$ - see front matter ª 2006 Elsevier Ltd. All rights reserved.

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CULTURAL AND HISTORICAL BACKGROUND Before the end of the 19th century, infant deaths in Europe in the first year of life were around 150e200 per thousand live births. About 40% of children died before their 10th birthday, with children from poor families twice as likely to succumb as those from more prosperous ones.1,2 Public health measures e including clean water and infection control e led to significant improvement by the early 20th century, although as late as 1910 two or three in every 10 live-born children died by the age of 10 years.2 Registration of births and deaths was introduced in England and Wales in 1837, and registration of stillbirth in 1928. No reliable national data are available prior to that date, but a recent study reviewed records from hospitals in six cities in the UK, Europe and US and found that between 1880 and 1930, stillbirth accounted for 5e10% of births.3 However, during that period hospital births were usually for women with problem deliveries, with most women giving birth at home, so this may not reflect true national rates. By 1930, after the establishment of the government-sponsored Committee on Maternal Mortality and Morbidity (1929), and when records were routinely available, there were 80 perinatal deaths per 1000 UK births. With the introduction of safe blood transfusion in the 1930s, and of sulphonamides and penicillin in the 1930s and 40s, mortality for both mother and infant improved dramatically. By 1945 perinatal deaths had fallen to 45, and by 1981 to 12 per 1000 births.4 Since that time there has been only a marginal change. Attitudes to child loss have changed in line with parental expectations and with prosperity. Children were valued in previous generations, but where poor families barely subsisted, a birth was also another mouth to feed. Conditions for many people in the industrialising world of the 19th century were similar to those experienced in the developing world today, with most income spent on food, long, hard hours of work, and precarious survival. This continued to be the case for much of the UK population as late as the 1930s and 40s. In previous centuries there is evidence that while attachment to grown children was strong, parents might be less attached to young infants, whose survival was not assured. Michel de Montaigne, who was deeply affectionate towards his family, commented ‘. I lost two or three (children), whilst they were at nurse, if not without grief, at least without repining.’5 A century later Simonds D’Ewes, on losing his only son at the age of 21 months, wrote ‘We both found the sorrow for the loss of this child on whom we had bestowed much care and affection and whose delicate favour and bright grey eye was so deeply imprinted on our hearts, far to surpass our grief for the decease of his 3 elder brothers, who dying almost as soon as they were born were not so endeared to us as this was.’6 A similar attitude may prevail in present-day urban communities in the developing world, where infant mortality is extremely high, with parents protecting themselves from too intense an attachment to a child whose hold on life is uncertain.7 The earliest published paper in the medical literature relating to parental distress after perinatal loss appeared in the 1950s. This was sympathetic to the mother’s distress, and advised encouraging the mother to put the loss behind her and have another baby.8 In another early paper, a physician comments with surprise that a woman had told him that she was as upset about her stillbirth as she had been by the loss of her mother.9 The father’s feelings were not discussed: his role was to support his wife and to help her recover.

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NOTES ON GRIEF AND MOURNING Grief is the normal affective response of a person to a significant loss and includes sadness, irritability, disturbed sleep and appetite, a sense of longing for the lost person, and occasionally visual or auditory hallucinations of the deceased. An acute sense of loss generally gives way to feelings of low mood or depression. Anger is common and may be directed towards others, or towards the self, for real or imagined failure to protect the lost person. Mourning is the process of recovery, with gradual lessening of distress and return to normal patterns of living. It is important that doctors and other health professionals do not pathologize a normal response to bereavement and treat it as though it were an illness. Bereavement is part of life, and the vast majority of individuals recover with time, not without continuing sadness, but able to live happy and productive lives. The relevant issue for health professionals is not whether a parent experiences feelings of grief, but whether there are factors in the management of the loss that facilitate or hinder recovery, and whether there are specific interventions that can be offered that will help parents. The literature on abnormal or ‘pathological grief’ is a patchwork of idiosyncratic definition and opinion. The absence of an agreed definition of what constitutes normal mourning has been a major problem. A summary of clinical opinion is that pathological grief differs from normal by its duration and/or the degree to which day-to-day behaviour and emotional state are affected.10 Although various subtypes have been suggested11, most descriptions fall into two broad categories, prolonged and absent grief. Grief is said to be prolonged if there is no improvement by 6 months. By this time the loss should not be centre stage in a person’s life, and though there will still be sadness, she might expect to be more or less able to carry out normal family or work responsibilities.12 A minority of parents show a low level of distress after loss, and perceive themselves as coping fairly well.13 Despite suggestion that suppression of feelings of grief predisposes to subsequent psychological problems14, empirical research shows that people who suppress grief do not usually experience relapse or other symptoms, and many recover with relatively few difficulties.15e18 PSYCHOLOGICAL EFFECTS OF PERINATAL DEATH ON MOTHERS In the weeks following perinatal death, mothers experience sadness, irritability, guilt or somatic symptoms.19,20 The high prevalence of feelings of depression and anxiety suggest that these are normal reactions. The severity of disabling symptoms diminishes over the first year21e23, but are normal for up to 1e2 years24, with about 20% of women having symptoms at case level a year after the loss.25 More intense or prolonged grief has been associated with poor level of social support21,22,26,27, history of mental health problems22,27,28, and more ‘neurotic’ pre-loss personality.29 Conversely, the construct of ‘hardiness’ as an individual resource has been posited to help bereaved parents adapt to perinatal loss.30 One study found a correlation between guilt-proneness and shame-proneness and grief intensity31, although the direction of causality could not be established. Studies on the association between childlessness and level of distress found conflicting results.22,28,32,33 No association has been found with difficulty in conceiving21,28, greater maternal age32e34, sex of the baby13,35, socio-economic status22,28,32, or religious observance.21,22,28,32,36 In addition to depressed feelings, 20% of mothers were found to have post-traumatic stress disorder (PTSD) in the pregnancy subsequent to stillbirth, and symptoms were

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enduring, although only 4% were at case level a year after the subsequent birth, and it was posited that the pregnancy following perinatal loss may be an activating event for PTSD symptoms.37 The same study also noted that PTSD was associated with the mother having held her dead baby.37 There is no evidence available regarding PTSD symptoms following neonatal loss or about PTSD after stillbirth in a non-pregnant group. There is a slight increase in puerperal psychosis following perinatal death but it remains rare.38

PSYCHOLOGICAL EFFECTS OF PERINATAL DEATH ON FATHERS Kennell et al19 included anecdotal evidence from fathers’responses in a study of mothers’ grief reactions, including an interesting observation that two fathers ‘tensely denied’ having grieved for their lost infants. Although research on perinatally bereaved fathers is similar to work on mothers in its methodological quality and findings, there are some important differences. In addition to grief, qualitative studies emphasize fathering and supportive roles, i.e., the experience of becoming a father and the perceived need to provide emotional support to the mother.39e42 Most quantitative studies comparing fathers to mothers have found lower levels of grief13,43e46 and lower levels of anxiety and depression in fathers than in mothers47e50, but higher than in a control group.47 One study found initial guilt feelings in fathers41, but this was not confirmed in other studies.39,40 A study of fathers in the pregnancy following stillbirth found significant anxiety which resolved with time, and case-level PTSD in 20%. As with mothers, these symptoms were associated with holding the dead infant, but symptom levels fell after the next infant’s birth.51 Vulnerability factors are similar to those in mothers.13,51

EFFECTS OF PERINATAL DEATH ON THE COUPLE RELATIONSHIP Perinatal loss can strain the relationship between bereaved parents, especially if parents do not experience grief reactions in tandem.39 For instance, when one parent is no longer feeling sad, the other may experience this as unfeeling. Both fathers and mothers may describe higher levels of marital dissatisfaction than expected.52 Longitudinal studies have identified an increase in relationship break-up.52,53 There is anecdotal evidence that couples may make significant life changes such as moving house as a consequence of the trauma of perinatal loss.54

EFFECTS OF PERINATAL DEATH ON SIBLINGS Experiences of siblings vary, and are influenced by age-related cognitive ability, anticipation of the new baby’s arrival, and the way in which the family responds to the loss. Children may pick up cues and know more than parents expect. Young children may imagine that they or their parents were to blame, and this may be especially relevant if the child himself had mixed feelings about the arrival of a new sibling. Children’s responses can be difficult for parents to deal with, as they may appear nonchalant or may ask questions that the grieving parents find painful.55e58 Older children may suffer a severe sense of loss59, and parents may be so preoccupied with their own grief that their children’s needs are overlooked.60

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EFFECT OF PERINATAL LOSS ON THE NEXT BORN The mother’s ability to form a close emotional relationship with subsequent children is also important. Several clinical authors have described the hazards of the ‘replacement’ child, who may be idealized or denigrated by the parents56, and the ‘vulnerable child’ whose parents constantly anticipate another loss and deal with the child with exaggerated anxiety.61 On the basis of clinical experience, some authors have advised delaying the subsequent pregnancy for a year to allow the mother time to mourn the lost child.10,14 More recent quantitative evidence shows that symptoms of depression and anxiety are higher in those who conceive quickly, and that unless there is another compelling reason for an early pregnancy, then waiting a year to conception is probably in the mother’s best interest.62 Two studies have found an increase in disorganization of infantemother attachment in the next born63,64, and one of these specifically linked this to the mother having seen the dead infant.64 CULTURAL DIFFERENCES Most research has been conducted in North America, Western Europe and Australia, with some studies deliberately excluding parents from ethnic minority groups and others having an under-representation of parents from ethnic minorities in their samples. None of these has specifically looked at cultural differences between northern European white parents (in UK, US or Australia) and those from ethnic minority groups. A qualitative study on low-income African American parents emphasized the added burden of other losses and socio-economic hardship, as well as the use of spirituality in coming to terms with the loss.65 One small study explored experiences of middle-class Indian women after perinatal loss and found both substantial grieving and sometimes family blame for not producing a healthy child.66 A study of Taiwanese women67 also emphasizes the importance of a cultural ‘ideology of continuity’, with women being expected to produce a child for the family. INITIAL PSYCHOSOCIAL MANAGEMENT OF PERINATAL DEATH: GENERAL PRACTICE POINTS When it becomes apparent that things are going wrong, parents should be told in clear language what is happening and what the medical management is. Parents value receiving structured information as well as support in helping them make sense of the event.68 At a time when parents are highly aroused and fearful, clinicians should note that parents may struggle to take in information and that it may need to be repeated. Information given to parents should also be communicated to other team members to avoid conflicting information. In a descriptive study on the care of critically ill neonates, Benfield and colleagues34 addressed the effects of parents’ involvement in decision-making, such as withdrawing ventilation when the prognosis for survival appeared hopeless. Parents who participated in such a decision did not show significant differences in overall intensity of grief symptoms, but showed significantly less anger, irritability and wanting to be left alone (mothers) and sleep disturbance, loss of appetite, irritability, crying and depression (fathers). Leon69 emphasizes the benefit of giving parents a role in decision-making for their dying infants with regard to their experience of helplessness.

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Recent protocols70,71 either explicitly or implicitly endorse interventions aimed at forming memories, such as seeing or holding the dead baby, giving a name, taking photographs and holding a funeral. The clinician should bear in mind that these protocols were developed on the basis of clinical impression and without empirical evidence that they were beneficial. There is now evidence that physical contact with the dead infant may be associated with poorer psychological outcome, particularly with regard to depression and post-traumatic stress disorder symptoms and to infantemother attachment in the next born.72 However, many parents experience these practices as meaningful and treasure the memory of their time with the dead infant, and some would choose to have contact regardless of potentially harmful outcomes. Decisionmaking in this regard raises interesting ethical considerations, with a potential conflict between the principles of autonomy and beneficence. The principle of patient autonomy is paramount, as in any medical decision-making, but arguably weakened by the reduced capacity of a parent to make decisions at a time when they are intensely shocked and distressed. Inevitably, in many cases the decision is likely to be heavily influenced by the attending staff. Staff previously invoked the principle of beneficence to justify removing the baby to protect parents from further distress, and now may invoke it to justify exposing even reluctant parents to the baby.73 MEDICAL NEEDS AFTER PERINATAL DEATH Mothers who suffer perinatal death may not have the same access to routine care where they can discuss their physical needs in the postnatal period. Close liaison between hospital and community services is important. Relevant issues of care include suppression of lactation, contraception, gynaecological complications and sexual difficulties.74 Parents appreciate the opportunity to meet the consultant responsible for the birth a month or two later to discuss possible reasons for their infant’s death, to review the autopsy report, and to raise questions about their own well-being and possible further pregnancies, although they are often disappointed when an autopsy does not explain the death.54 SPECIFIC INTERVENTIONS Counselling is offered routinely and is often found useful by those who seek it, although a recent Cochrane review has not found randomized controlled trials to demonstrate its value.75 Support groups are provided by voluntary organizations and are highly valued by their members. Some centres use specialist grief support teams, which integrate immediate psychosocial management, ongoing support, counselling and specialist referrals for treatment of pathological grief reactions.21,76 Such an approach has the benefit of providing continuity of care, but the resources may not be available in most hospitals. Bourne and Lewis77 argue for units to have a staff forum where every perinatal death is discussed, so that information and awareness are increased and the welfare of the treating doctors and nurses can be promoted. REFERRING TO PSYCHIATRIC SERVICES While parents may be reassured that most people need time to grieve and that symptoms for 1e2 years may be normal, a referral for psychiatric assessment is indicated if depressive symptoms are associated with suicidal ideas or if the depressive symptoms

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continue at a level of severity beyond 6 months that prevents the parent taking up normal life again. Psychiatric management may include antidepressant medication if indicated, judicious short-term use of hypnotic medication to alleviate sleep disturbance, and psychological treatments. Psychological treatments may be useful in addressing some of the continuing emotional difficulties experienced by parents, such as helplessness, rage at losing a cherished part of oneself, and guilt due to the inability to prevent the death.69 Although both antidepressant medication and psychotherapy have been reported as useful in treating ongoing depression, they have not been systematically evaluated for specific use in perinatal bereavement. SUMMARY During the mourning of a perinatal loss, parents may experience sadness, guilt, anxiety and depressive symptoms. Fathers show a lower intensity of symptoms than mothers. The mourning process can take between 1 and 2 years. Occasionally it can be complicated by prolonged symptoms which may require psychological treatment. Psychiatric disorders such as severe depression, post-traumatic stress disorder and, very rarely, psychosis may develop in some parents and indicate a referral for psychiatric care. Longer-term sequelae of perinatal bereavement in the family may include parental discord and separation, possibly related to PTSD, as well as psychological problems in siblings. Immediate psychosocial management of perinatal death includes giving clear information and providing sympathetic support. Guidelines commonly in use at present advocate seeing and holding the dead baby, naming it, and obtaining mementos to help the parents mourn the loss. Such practices are valued by many parents and are culturally entrenched, but research shows that physical contact with the dead infant may be associated with poorer psychological outcome, in particular the development of post-traumatic stress symptoms in both parents and an increased likelihood of disorganization of infantemother attachment in the nextborn child. Continuing care may include postmortem discussions, attention to medical needs of mothers, and the use of support groups for those who find them helpful. For parents who struggle to recover or who develop psychiatric disorders, specialist care may be indicated. Although risk factors such as previous psychiatric disorder and poor social support have been identified, more research is needed in order to identify the most vulnerable parents. For those displaying psychological morbidity, counselling, psychotherapy and antidepressant medication may be of benefit, but empirical trials are yet to be conducted.

Practice points  perinatal death represents a significant bereavement; it is normal for both mothers and fathers to experience intense distress  parents should expect that by 6 months after the loss, they will have recovered enough to resume normal activities and be beginning to enjoy life again, although they should not be surprised if they continue to feel significant distress for 2 or even more years after the loss

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 parents value information on what is happening when problems arise in pregnancy or during labour, and appreciate being involved in decisions on care of critically ill neonates  the current practice of encouraging contact with the dead baby to facilitate memory formation is culturally entrenched and highly valued by some parents; however, this practice has been associated in some studies with post-traumatic stress disorder in parents and with disorganization of infantemother attachment in the next born  counselling interventions and self-help groups are valued by parents, but there is no empirical evidence that they reduce psychological symptom levels  suicidal ideation or psychotic symptoms are rare, and require urgent psychiatric referral

Research agenda  effectively identifying parents who are vulnerable to developing psychological morbidity  further empirical investigation of the effects of parental exposure to the dead baby  controlled trials on the effectiveness of psychological and pharmacological therapies for psychiatric morbidity precipitated by perinatal death

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