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Supporting bereaved families through neonatal death and beyond
Seminars in Fetal & Neonatal Medicine 18 (2013) 99e104
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Seminars in Fetal & Neonatal Medicine journal homepage: www.elsevier.com/locate/siny
Supporting bereaved families through neonatal death and beyond Ian Woodroffe* 4 Station Road, Swaffham, Bulbeck, Cambridge CB25 0NB, UK
s u m m a r y Keywords: Attachment Grief Mourning Post-traumatic stress Pre-term death Psychological support
The article reviews the contributing factors of parental grief following the admission and death of a preterm baby to neonatal intensive care. The psychological duty of care towards parents is examined with regard to grief theory. Ó 2012 Published by Elsevier Ltd.
1. Introduction Four jumbo jets line up one behind the other on the runway at Heathrow. All seats on the planes are filled with coffins of pre-term babies that have died that year in the UK: 2200 coffins (a statistical average of the last ten years). On the edge of the runway is a crowd of adults and children numbering 15,400. The crowd consists of parents, grandparents and one sibling per family. That constitutes seven people per family and that would be a conservative number of people affected by each sad neonatal death in the UK each year. Each member of the crowd deserves the best possible psychological care at the time of the death and after. 2. The psychological world of families The shattering of the assumptive world for the parents of a preterm baby has been acknowledged in the literature.1,2 The multiple loss and grief experiences of parents with a pre-term baby simply through having their baby in a neonatal intensive care unit (NICU) is also recorded.1 Published figures testify to the serious possibility of post-traumatic stress disorder (PTSD) occurring in parents who have suffered a traumatic birth.3 The consequences of these psychological insults on parents have profound implications at the moment of entry for a family on NICU. 3. Communication One consequence of parental mental anguish is difficulty in communication. When traumatic news has been part of the
* British Association for Counselling and Psychotherapy, UK. Tel.: þ44 (0) 7968 836645. E-mail address: [email protected]. 1744-165X/$ e see front matter Ó 2012 Published by Elsevier Ltd. http://dx.doi.org/10.1016/j.siny.2012.10.010
parent’s life, a point is reached when no more information can be absorbed and processed by the brain. It may seem that parents are listening to, and understanding, what is imparted to them by medical staff, but that may not be the case. It is understood that in trauma situations people often are not able to absorb the news.4 Parents may already be overloaded when the medical staff make the decision that a conversation about withdrawal of intensive care is necessary. Having talked to many parents after the first discussion by a consultant concerning the withdrawal of intensive care, I have often found an inability of parents to recall much of the discussion. Communication difficulties in stressful situations may be overcome in a number of ways. The Bliss publication Making critical care decisions for your baby5 has provided an excellent tool for parents at this difficult time. It may also be helpful for the parents to be given a copy of the consultant’s record of the conversation in the medical notes. Tape-recording of the conversation about the withdrawal of intensive care may also be beneficial. An Australian project that recorded such conversations between parents and consultants was very successful.6 The parents re-listened to the tape more than once a week over a period of twelve months by themselves and with other members of the family. There may be instances where parents have displayed an inability to believe that their child is going to die. Staff sometimes comment that parents are in denial e comments that may be made with a judgemental overtone. Some parents just cannot process more traumatic news, and as a psychological defence they stop listening.7 4. Attachment Another consequence of the trauma experienced by parents in NICU is that natural ‘at birth’ bonding and attachment is shattered.8 When presented with more traumatic news, such as the
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communication of the unsustainability of life for their baby, some parents make a conscious decision not to attach, ‘not to get too close’. Such behaviour is exhibited as a protection against the forthcoming pain at the moment of their child’s death. Parents who adopt such a defense can create difficulties for staff and can inhibit communication about the choices that are available. Such parents may need psychological support and help from an experienced professional in addition to nursing staff. The British Association of Perinatal Medicine (BAPM) recommends that there should be one full time counsellor on every Level 3 NICU in the UK.9 Of the 65 Level 3 NICUs in the UK, few have access to a full-time counsellor. There is no evidence that the trauma for parents at the moment of death of their baby is lessened by not forming an attachment before the death. From my own experience of counselling bereaved parents it is evident that guilt after the death of the baby can occur in parents who have deliberately avoided bonding measures. Work with parents on repairing the bonding and attachment between parents, siblings and the baby may aid a positive memory recall of their baby in the post-death grief process. This is an area for future research. 5. Family emotion/death culture All families on a NICU will have individual emotional/death cultures.1 The behaviour of families will be informed by this early learning of how to adapt and respond to traumatic situations. The culture of families will influence their behaviour on NICU, particularly when considering the death of their baby. Previous losses and deaths and how these have been processed will also influence behaviour. It is well understood in grief that the present grief experience may re-awaken past losses.10 Often the NICU documentation does not record past losses, as family trees are not commonly used. If the sister of a mother in NICU ended her own life six months ago, such an event will surely affect the mother’s ability to handle more trauma. Good practice standards require the documentation of relevant ‘past losses’ information to be recorded. This would help staff and counselling support services to understand parental reactions. 6. Sudden death The sudden and unexpected death of a pre-term baby is a violent trauma for parents and family. There is often an inability to believe what has happened. One moment there is a sick and fragile baby (but nobody had talked of death) and the next moment there is the traumatic reality of a dead baby. The parents may not be able to comprehend the reality and may question medical and support staff over and over again with a complete sense of disbelief. Families record such moments as living in a dream or nightmare. Grief theory informs us that the first part of the grieving process is the acknowledgement of reality.10 The important work of the team on NICU is to offer choices to parents that will gently present reality. Some NICUs create ‘journey boxes’ from the time of admission; if not, a ‘memory box’ after death can be created. Some units have palliative care pathways set up with the local children’s hospice, and in this case teams from the hospice can engage parents in creative memory making. Post-death rituals such as prayers, photographs (with parental permission), washing, dressing and cuddling their baby are now common practices that offer comfort and engage families in the early expression of grief. Much has been written about not rushing parents at this time. Some may doubt the benefit of parents cuddling their dead baby,11 but bereavement support workers constantly confirm that parents who made the choice to cuddle record this moment as a very precious memory.12,13
Hospice palliative care pathway provision enables the choice for the baby to rest in a hospice cool room. Some parents have reported that this is a preferred option. Hospices can offer a more familyorientated post-death environment. Parents should have the option to take their baby home after death. Staff need to offer this choice and be able to provide the necessary logistical support. For some parents this is a preferred option, particularly if siblings are involved. 7. Palliative care When asked confidentially what is their worst fear on NICU, most parents will reply that they think their baby is going to die. For some, any amount of ‘positive’ communication from the staff will always be doubted, due to the strong death fear. This fear may be stored at the back of the mind as hope begins slowly to emerge. The hope may be minimal for a period of time and then the medical staff have to communicate their belief that life for the baby is unsustainable. Some parents will have difficulty accepting a terminal diagnosis: ‘he is a fighter and will pull through’; other parents will struggle with the painful reality. Psychologically it is an impossible conflict to visit daily to build attachment and yet to be told that the physical attachment has to end. How do family members begin to understand the world of pre-death grieving (anticipatory grief) when they long for more attachment? Parents and family members need time to assimilate the news that their baby is going to die. The initial news imparted to them is likely to be a shock. The hope they may have had has now been undermined. Parents will question the staff about the length of time that they may have with their baby before death. Understandably uncertain answers may be given which increase the potential anxiety. The Bliss publication referred to above5 has been very helpful for parents during the time of assimilation of the news that intensive treatment may be withdrawn. The booklet enables parents to read and re-read the difficult news. Other family members can read the information, thus reducing the need to question parents. Again the local children’s hospice team may be called to support the family. Memory-making and palliative care accommodation for the baby and family are often part of the service provision. Parents need to be well-informed about the options for where they wish their baby to die. Whether the parental decision is for a hospital, a home or a hospice death, adequate time, information and emotional support must be provided. Deciding where their baby will die is a monumental decision for parents e one that will stay with them for the rest of their lives. If there is to be a pre-death transfer to the local children’s hospice, it is essential that the process is seamless. Such transfers demand that there is excellent communication between staff in the hospital, hospice and transport team. Parents’ pre-death grieving is complicated by arrangements that are not clear, or are not carried out in the way that they have been informed. Any expectation by parents that has been created by staff, and is not fulfilled, will be remembered for the rest of the parents’ lives and may be internalised as a failure to care for their baby. 8. Hospital deaths Some parents make the choice for their baby to die in NICU, especially if it is anticipated that the death will occur shortly after the withdrawal of intensive care. However, the environment in NICU is not always best suited for a distressing death and grieving parents. There may be other parents in the room who pick up the distress in the environment and this will be very exposing for the parents of the dying baby. A space with privacy is essential for the
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family, and staff should give some thought to the allocation of an appropriate room. The moments preceding the death are bittersweet for parents. They are likely to have little or no idea how the death will occur. Best practice would be for a member of staff to gently inform the parents of what may occur at the death moment, while also explaining that no one can predict it with any accuracy. I vividly remember being with some parents who had been told that a peaceful death was expected; instead a massive bleed occurred. The visual image of that death remains with the parents after many years. Most NICUs have chaplaincy resources. Many parents, even those who proclaim not to have a religious faith, are grateful for some chaplaincy input. Prayers, baptism and blessing can be a comforting rite of passage for the parents to witness and be part of. Within those rites of passage there is an implied theology that the baby has an existence after death. Whatever name is given to that existence the parents feel that the death of their precious baby is not a ‘dead end’ and often the afterlife language is used with a sense of comfort and continuity. Staff who are alongside parents at such moments may be surprised at their creative expressions, attempting to lessen the harsh reality that their baby has died. The important principle for staff is that they do not question the parents’ belief system nor express their own beliefs, unless specifically asked by the parents.
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consider it good practice to offer parents the choice to accompany their baby to the mortuary with a member of staff in attendance. Practices differ around the transportation of the baby. Some units use a Moses basket, some offer the parents the opportunity to carry their child, others require a member of staff to take the baby, with the knowledge that the appearance of the hospital corridors may be distressing. Parents often need to know what exactly has happened to their baby. In my experience it may be beneficial for parents to take their baby to the mortuary if they wish; they know where their baby is and the reality of the death is acknowledged.10 Transparency with parents is important not only in terms of medical trust and ethics, but also because grieving may be compromised if transparency is not upheld. Parents need to know how they can visit their baby after death. An appointment is usually required to view the baby in a hospital mortuary. Such arrangements are best given to parents in writing, as little is heard and understood at the time of the baby’s death. Families who turn up to see their baby, unaware that appointments have to be made, are likely to be distressed and angry when not ‘allowed to see their baby’. Such occurrences give rise to very strong feelings, resulting in questions such as ‘Whose child is it?’ and ‘What secrets are being kept from them by the authorities?’ Some parents have reported to me that it feels as if their child has been ‘snatched away’. 10. Postmortem
9. Post death The post-death behaviour of parents will be influenced by their emotional/death culture as mentioned above. There is no way of predicting how parents will react. Some will wish to stay and cuddle their baby e it may be a short or a longer cuddle, or it may be so long that staff begin to feel that the parents are not able to separate from their baby. At this moment it is important that staff do not transmit a message of disapproval to such requests by parents. A difficult situation may arise for staff if there is a heavy demand on space, i.e. unit bedrooms. How long is helpful for the parents to stay with the baby? The answer lies with the parents, not with the staff or health care professionals. The emotional struggle of walking away from their precious dead baby is likely to be the worst moment in their lives, a lasting traumatic memory. Staff may well witness the difficulty of parents struggling with the first and second tasks of mourning e facing the reality and expressing the pain10 e a moment not to be rushed. Some parents may want to leave the unit as soon as possible, as a statement of getting away from the area of pain. This may reflect the family death culture, to ‘flee the pain/to distract and move on’ e all words used by parents. Staff need to recognise the behaviour without expressing judgemental attitudes. Many units have a best practice post-death guideline, which includes offering parents a lock of their baby’s hair, the opportunity of bathing and dressing, and taking photographs. Photographs can range from digital pictures taken by the staff and given to the parents either as prints or in digital form, to family group photographs taken by professional photographers. All of these post-death memory-creating tasks can only be carried out with the consent of the parents. Post-death memory tasks are important as they serve two purposes. First, they are precious memories of such a short life. Second, each task relates to the first task of mourning which is essential for the grief journey. At the moment of the death of their baby, parents are likely to be psychologically overwhelmed and unable to believe what is happening. Gentle guidance and explanations from staff may be necessary to explain why memory tasks are an important feature for the present and for the future. Parents have choices after the death of their baby. Some will opt for the baby to be taken to the hospital mortuary. Some hospitals
Although offering a postmortem is considered good practice, it is often a subject not raised with parents. This is a difficult area for some parents. In my own practice parents have reported that they felt that the consultant was asking to ‘cut up our baby’. Medical staff may be well-versed with postmortem language but it is important to acknowledge that the words may provoke very different internal thoughts and images in parents. Some parents will consent with the belief that they will find the reason why their baby died; it never crosses their mind that no reason may be found. Others will recoil from the very thought of a postmortem. All medical staff need to be sensitive to the parents at this time and apply no pressure to conduct a postmortem. In the case of a sudden death the coroner may require a postmortem and parents will need to grapple with the difficult fact that this is the law. 11. Follow-up of parents after the death of their baby The general policy in many hospitals is to provide a follow-up appointment with a consultant around six weeks after the death. In my conversations with parents many have asked why the followup appointment needs to be as long as six weeks or more. The timing of follow-up after bereavement should be reviewed by hospitals. Best practice may be to offer to see the parents as soon as they wish or when the results of the postmortem are received. Much thought has to be given to the venue for the follow-up visits. In some hospitals the follow-up appointment takes place on the NICU. However, in my view this practice should not be followed. To ask parents to enter the unit where the death occurred could be construed as insensitive, and demonstrates a lack of understanding of the grief process. To encounter the sounds and the smells of the ‘death environment’ of their baby will trigger a reliving of the death.14 To return to the hospital will trigger emotions of all the journeys made to NICU and reawaken painful memories. Given the practicalities of follow-up appointments, if they are to occur on hospital premises, it is suggested that the consultations take place away from the maternity and NICU building. In my experience there is often a very low percentage of uptake for bereavement follow-up appointments. From a psychological and grief perspective this may be understandable. Parents may still
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be struggling with the reality and may not wish to engage with the medical facts. There is a potential role for general practitioners in providing follow-up consultations in their surgery. If postmortem information were given in the local surgery, parents would be spared the trauma of returning to the hospital. In the evermore frequent scenario of psychological care being removed from NICUs it is important that the general practitioner is aware of the parents’ distress and can provide counselling and support services. Counselling resources may be available from Bliss and other charities, such as Child Bereavement UK (CBUK), but at the present time even these facilities are limited. 12. Siblings Throughout the NICU journey siblings are an important consideration. Some parents may need guidance on how to assist siblings in coping with a brother or sister in NICU. Others may make the unilateral decision that NICU is too frightening for siblings to visit. It is clear that the degree to which parents communicate with siblings influences how well they cope with the situation.15 Clearly if there has been little communication between parents and siblings while the baby is on the unit then there will be difficulties in explaining the death. The assumption that, if children are not told about illness and death they will not know and not be affected, is now well-evidenced to be erroneous.10 There are, however, families who still believe this false assumption and may react in such a way on NICU. What siblings know is a unique blend of what they have been told, have overheard, observed or imagined.16 There is a large measure of disagreement between what parents think children’s coping strategies are and what children themselves say.17 The work of CBUK and others has clearly demonstrated the psychological dangers of children who imagine in death situations.18,19 Such imagining can often lead to make-belief memories, and dysfunctional thinking and behaviour in later life. It is worth remembering that a sibling will have the longest memory of the death and its effects. Before a death occurs siblings have already had a difficult adjustment to the NICU stay of their brother or sister. They may have experienced physical and emotional isolation and have had difficulty in understanding illness, causing worry about their own vulnerability. Physical symptoms of regression, withdrawal or attention-seeking behaviours may be evident. Kirsti Dyer, herself a doctor, writes about her daughter’s experience in NICU and her own difficulty as a parent to respond to her daughter.20 Hospitals that have shared palliative care pathways with local children’s hospices will be able to draw on the resources and expertise of the hospice teams. For hospitals where no such arrangements exist, internal help may be required. The hospital play teams offer an excellent resource, often building a communication bridge between parents and siblings. If no extra resources are available, there is an unreasonably heavy burden placed upon the unit staff to manage siblings and parents and to provide tender loving care for the dying pre-term. In my experience, early involvement of siblings in the NICU leads to a better outcome. Hospital play teams should be involved as soon as possible, as they can facilitate simple tasks that help bonding between brother and sister and provide opportunities for communication with the sibling from parents and staff. The making of a memory box can involve the sibling with the same useful outcomes. Some parents make a choice to include the sibling at the time of death of the pre-term. Many prefer to have a private parent time until the death has occurred, then to invite the sibling into the room to have a cuddle before cooling occurs. There appears to be little
evidence to demonstrate that this practice is either helpful or harmful. Interviews conducted by CBUK indicate that siblings appreciated the experience. It could be postulated that such involvement helps with the first of Worden’s grieving tasks.10 Siblings react to the death of a brother or sister in ageappropriate ways. Communication with the sibling needs to be in age-appropriate language. Children’s concept of death is bound up with their emotional and cognitive development and parents may well need help in understanding this fact.21 Post-death support groups for siblings offer a unique opportunity for them to express their grief. Limited resources within the hospital may not provide for such a follow-up service, but many hospices have such programmes. Sadly, very few community facilities are available for sibling support, and often siblings are left struggling with their own internal concepts of loss and grief. Charities that work with such children are decreasing in number due to financial constraints. Grief that is not understood or expressed by a sibling may well surface later in behaviours that are deemed as unacceptable by the educational system, without an understanding that the root of such behaviours lies within an unexpressed grief. 13. Grandparents Grandparents can be a forgotten generation in the NICU journey and in the death event. Not only do these members of the family struggle with the loss of their grandchild and the continuity of the family; they also struggle with the role of parenting their own child, who they observe in a great deal of emotional pain. This parenting role can mask their own grief, and grief feelings can be submerged by the caring role. It is often assumed after discharge following a death that grandparents are able to cope, and few resources exist for grandparents following a hospital-based death. Some hospice bereavement teams have focus groups for grandparents that provide an excellent support system. 14. Future pregnancies Parents who have experienced the death of their pre-term baby will never experience another pregnancy without anxiety and fear. Any subsequent pregnancies will always be tainted with significant dates and concerns about history repeating.22 Once the assumptive world of pregnancy has been shattered it is virtually impossible to believe that the nine-month journey could ever go smoothly again. If there is counselling support for parents in NICU, the role of the counsellor often entails subsequent pregnancy support. If the counselling role in NICU is lacking, then parents may not receive the support that is often required. A thoughtful ethical question can be raised here: If it is so well-evidenced that parents emotionally suffer after the death of their baby and in subsequent pregnancies, why is it that so few support mechanisms are in place to meet the needs of parents who request help? Is there not a duty of care on the health providers to respond appropriately? 15. Staff Staff play a major role in supporting parents and families at the time of a pre-term death. This is a role that requires much in the way of practical knowledge and emotional maturity. It is a role frequently considered to be merely part of the work, with little offered in the way of grief and loss training. Learning opportunities are not always available, and despite BAPM recommendations, multi-disciplinary debriefs seldom take place after a death.23 It is acknowledged that staff do become attached to the babies that are being nursed, some more than others. Staff are emotionally affected
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by the death of a pre-term that they have cared for. The dual role of handling their own feelings and helping the parents and families in the death situation is a demanding one. Support for staff in these situations is not always recognised or available. 16. Funerals Arranging a funeral for a much-wanted and planned-for baby is a difficult demand for parents. As with all funeral rites of passage there are so many practical questions that need to be answered, usually within 10e14 days of the death. Questions such as ‘Burial or cremation?’, ‘What do we dress baby in?’, ‘What can or cannot be placed in the coffin?’. The emotional pressure on parents is huge. At this time some unusual behaviours can surface, as a result of the overload of emotions and the need to feel that the baby is well cared for after death. Any promises made about after death care must be fulfilled. I remember a funeral director assuring a mother that her child would never be alone when transporting the baby from the mortuary to the funeral home. It later emerged that the baby was transported in the back of a white delivery van. To this day the mother still has nightmares of the scene. Hospital chaplains and bereavement staff within the hospital may be of great help to parents at this time. Many parents without any stated faith appreciate loving support from chaplains. Indeed hospital chaplains often conduct baby funerals. Their experience and sensitivity are often vital on an otherwise very difficult day for families. This can potentially lead to chaplains conducting many baby funerals in a week, at a significant emotional cost to themselves. Support structures for chaplains need constant reviewing. Families may often wonder whether siblings should attend the funeral. Such a question will be answered in ways that reflect the family death culture. Some parents shrink away from having to explain a cremation to siblings. Sometimes parents want to give a choice to the sibling as to whether they attend the funeral or not. It is important to remember that the sibling may have no understanding of what a funeral is. A precursor to asking about attendance is to inform the sibling, in age-appropriate language, what happens at a funeral. This is not an expected role of parenthood, so help may be required. The listening work of CBUK demonstrated that many children can manage post-death rites of passage if their questions are answered factually and sensitively, in ageappropriate language.24 It is likely that the questions will be repeated as the sibling’s physical and emotional development takes place over the years. Parents may need a point of contact for support at these times. Parents who choose burial for their baby may encounter what they perceive as ‘less than helpful’ regulations at cemeteries or churchyards. Many churchyards have strict regulations about the design and content of grave headstones. Turmoil may result if parents consult a religious representative only to discover that what they would like as a permanent memorial to their baby is not allowed. Some churchyards will not permit headstones that depict teddy bears, some church regulations will not entertain any symbol or wording that is not Christian. Difficult discussions may take place, and to grieving parents it can appear that the memory of their baby is not being sensitively respected. Parents may need some support in these matters. If no such support is available then the twists and turns of the early grief journey are heart-rending. It is remarkable that so little coordinated post-death follow-up is available throughout the UK.
how the dismantling process takes place represent the painful difficulties of the third task of mourning as expressed by Worden.10 Anniversary services may be offered by hospital chaplaincy services, by hospices or by some enlightened churches. Attendances are frequently large, suggesting that these services offer comfort to the parents. More research is needed to ascertain whether these services facilitate or impede the resolution of grief.
18. Conclusion The birth of a pre-term baby is likely to cause emotional and psychological distress for the parents. The ensuing multiple grief will have an effect on communication and coping strategies for parents. If the outcome of the NICU experience is that the baby dies, another irreversible layer of grief is added to the parents’ experience. Their reproductive assumptive world has been shattered and for some the outcome may lead to post-traumatic stress disorder. The ability of parents to handle the trauma will depend upon their emotional resources, their family loss/death culture and the support they receive from professionals with appropriate grief training. Their grief journey will be evident to staff on the NICU and will continue long after discharge. It is recommended that well-developed, robust and sustainable support programmes should be available to all parents who request help. Such programmes should be clearly identified within NICU as set out in BAPM guidelines for Level 3 NICUs.9 As part of the demonstration of duty of care, programmes should be available to parents pre death, post death and after discharge, to facilitate grieving and support of subsequent pregnancies. The support work by Bliss, CBUK and many other charities is excellent, yet large numbers of parents cannot access the service when they need it. The health of parents following a pre-term death is compromised if adequate support services are not available.25 It is surprising that in the twenty-first century, when so much is known about physical and emotional wellbeing and the consequences of trauma, that so many parents are denied professional support as a result of lack of resources. How can hospitals increase NICU cot capacity, ignore the BAPM recommendations and reduce emotional support? Future generations may observe that a vital link in the chain of care for parents of pre-term babies was broken, leading to more psychological distress for parents.
Research directions The effect on parents’ mental/physical wellbeing when there is a lack of ongoing support around the time of the death of their pre-term baby. A measurement of the mental/psychological wellbeing of parents who have taped copies of withdrawal of intensive care conversations with a consultant versus those who have no taped material. The helpfulness, or otherwise, of anniversary services as part of the grief process. The levels of anxiety in parents during the next pregnancy following the death of a pre-term baby.
17. Adjustment at home and beyond Conflict of interest statement Nurseries that have been prepared for the baby are no longer going to be used for the intended purpose. By whom, when and
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None declared.
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Funding sources None. References 1. Woodroffe I. In: Pfund R, Fowler-Kerry S, editors. Perspectives on palliative care for children and young people. Oxford: Radcliffe Medical Press; 2010. p. 252e68. 2. Kauffman J, editor. Loss of the assumptive world: a theory of traumatic loss. New York: Brunner Routledge; 2002. 3. www.birthtraumaassociation.org.uk. 4. Sparshott MM. Pain, distress and the new born baby. Oxford: Wiley/Blackwell; 1997. p. 149. 5. Bliss. Making critical care decisions for your baby. 2nd ed. 2011. www.Bliss. org.uk. 6. Koh TH, Butow PN, Coory M, et al. Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised control trial. BMJ 2007;334:28 [Epub 2006 Dec 1]. 7. Brian T, Sparshott MM. Relating to relatives. Oxford: Radcliffe Medical Press; 1996. 8. Klaus MH, Kennell JH. Parenteinfant bonding. St Louis: Mosby; 1976. 9. British Association of Palliative Medicine. Service standards for hospitals providing neonatal care. 3rd ed. London: BAPM; 2010. 6.5. 10. Worden JW. Grief counselling and grief therapy: a handbook for the mental health practitioner. New York: Springer; 2009. 11. National Institute for Health and Clinical Excellence. Publications.nice.org.uk/ antenatal-postnatal-mental-health-cg45/changes-since publication. 12. Department of Health. Care and respect in death: good practice guidance for NHS mortuary staff. Gateway 6831. London: DOH; 2006.
13. Geerinck-Vercammen R. With positive feeling: the grief progress after a stillbirth in relation to the role of professional caregivers. Eur J Obstet Gynecol 1999;87:119e21. 14. Cowles KV. Cultural perspectives on grief: an expanded concept analysis. J Adv Nurs 1996;23:287e94. 15. Kramer R, Moore I. Childhood cancer: meeting the special needs of healthy siblings. Cancer Nurse 1983;6:213e7. 16. Lobato DR. Brothers, sisters and special needs: information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore: Paul H. Brooks; 1990. 17. Walker C. Stress and coping in siblings of childhood cancer patients. Nurs Res 1988;37(4):208e12. 18. Child Bereavement UK. Talking to children when a baby dies. Information sheet. Saunderton, UK: CBUK; 2010. 19. Rector L. Supporting siblings and their families during intensive baby care. Baltimore: Paul H. Brookes; 2007. p. 31. 20. Dyer KA. Grieving parents in the NICU, Part 1 & Part 2. Neonatal Netw May/June 2005;24(3). 21. Brown E. Loss change and grief: an educational perspective. Abingdon, Fulton: David Fulton Publishers; 1999. 22. McHaffie HE, Laing IA, Lloyd DJ. Follow up care of bereaved parents after treatment withdrawal from newborns. Archs Dis Childh Fetal Neonat Ed 2000;84:125e8. 23. British Association of Palliative Medicine. Palliative care (supportive and end of life care): a framework for clinical practice in perinatal medicine. London: BAPM; 2010. 24. Child Bereavement UK. Explaining funerals, burial and cremation to children. Information sheet. Saunderton, UK: CBUK; 2010. 25. Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol 2007;27:230e7.
Contents lists available at SciVerse ScienceDirect
Seminars in Fetal & Neonatal Medicine journal homepage: www.elsevier.com/locate/siny
Supporting bereaved families through neonatal death and beyond Ian Woodroffe* 4 Station Road, Swaffham, Bulbeck, Cambridge CB25 0NB, UK
s u m m a r y Keywords: Attachment Grief Mourning Post-traumatic stress Pre-term death Psychological support
The article reviews the contributing factors of parental grief following the admission and death of a preterm baby to neonatal intensive care. The psychological duty of care towards parents is examined with regard to grief theory. Ó 2012 Published by Elsevier Ltd.
1. Introduction Four jumbo jets line up one behind the other on the runway at Heathrow. All seats on the planes are filled with coffins of pre-term babies that have died that year in the UK: 2200 coffins (a statistical average of the last ten years). On the edge of the runway is a crowd of adults and children numbering 15,400. The crowd consists of parents, grandparents and one sibling per family. That constitutes seven people per family and that would be a conservative number of people affected by each sad neonatal death in the UK each year. Each member of the crowd deserves the best possible psychological care at the time of the death and after. 2. The psychological world of families The shattering of the assumptive world for the parents of a preterm baby has been acknowledged in the literature.1,2 The multiple loss and grief experiences of parents with a pre-term baby simply through having their baby in a neonatal intensive care unit (NICU) is also recorded.1 Published figures testify to the serious possibility of post-traumatic stress disorder (PTSD) occurring in parents who have suffered a traumatic birth.3 The consequences of these psychological insults on parents have profound implications at the moment of entry for a family on NICU. 3. Communication One consequence of parental mental anguish is difficulty in communication. When traumatic news has been part of the
* British Association for Counselling and Psychotherapy, UK. Tel.: þ44 (0) 7968 836645. E-mail address: [email protected]. 1744-165X/$ e see front matter Ó 2012 Published by Elsevier Ltd. http://dx.doi.org/10.1016/j.siny.2012.10.010
parent’s life, a point is reached when no more information can be absorbed and processed by the brain. It may seem that parents are listening to, and understanding, what is imparted to them by medical staff, but that may not be the case. It is understood that in trauma situations people often are not able to absorb the news.4 Parents may already be overloaded when the medical staff make the decision that a conversation about withdrawal of intensive care is necessary. Having talked to many parents after the first discussion by a consultant concerning the withdrawal of intensive care, I have often found an inability of parents to recall much of the discussion. Communication difficulties in stressful situations may be overcome in a number of ways. The Bliss publication Making critical care decisions for your baby5 has provided an excellent tool for parents at this difficult time. It may also be helpful for the parents to be given a copy of the consultant’s record of the conversation in the medical notes. Tape-recording of the conversation about the withdrawal of intensive care may also be beneficial. An Australian project that recorded such conversations between parents and consultants was very successful.6 The parents re-listened to the tape more than once a week over a period of twelve months by themselves and with other members of the family. There may be instances where parents have displayed an inability to believe that their child is going to die. Staff sometimes comment that parents are in denial e comments that may be made with a judgemental overtone. Some parents just cannot process more traumatic news, and as a psychological defence they stop listening.7 4. Attachment Another consequence of the trauma experienced by parents in NICU is that natural ‘at birth’ bonding and attachment is shattered.8 When presented with more traumatic news, such as the
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communication of the unsustainability of life for their baby, some parents make a conscious decision not to attach, ‘not to get too close’. Such behaviour is exhibited as a protection against the forthcoming pain at the moment of their child’s death. Parents who adopt such a defense can create difficulties for staff and can inhibit communication about the choices that are available. Such parents may need psychological support and help from an experienced professional in addition to nursing staff. The British Association of Perinatal Medicine (BAPM) recommends that there should be one full time counsellor on every Level 3 NICU in the UK.9 Of the 65 Level 3 NICUs in the UK, few have access to a full-time counsellor. There is no evidence that the trauma for parents at the moment of death of their baby is lessened by not forming an attachment before the death. From my own experience of counselling bereaved parents it is evident that guilt after the death of the baby can occur in parents who have deliberately avoided bonding measures. Work with parents on repairing the bonding and attachment between parents, siblings and the baby may aid a positive memory recall of their baby in the post-death grief process. This is an area for future research. 5. Family emotion/death culture All families on a NICU will have individual emotional/death cultures.1 The behaviour of families will be informed by this early learning of how to adapt and respond to traumatic situations. The culture of families will influence their behaviour on NICU, particularly when considering the death of their baby. Previous losses and deaths and how these have been processed will also influence behaviour. It is well understood in grief that the present grief experience may re-awaken past losses.10 Often the NICU documentation does not record past losses, as family trees are not commonly used. If the sister of a mother in NICU ended her own life six months ago, such an event will surely affect the mother’s ability to handle more trauma. Good practice standards require the documentation of relevant ‘past losses’ information to be recorded. This would help staff and counselling support services to understand parental reactions. 6. Sudden death The sudden and unexpected death of a pre-term baby is a violent trauma for parents and family. There is often an inability to believe what has happened. One moment there is a sick and fragile baby (but nobody had talked of death) and the next moment there is the traumatic reality of a dead baby. The parents may not be able to comprehend the reality and may question medical and support staff over and over again with a complete sense of disbelief. Families record such moments as living in a dream or nightmare. Grief theory informs us that the first part of the grieving process is the acknowledgement of reality.10 The important work of the team on NICU is to offer choices to parents that will gently present reality. Some NICUs create ‘journey boxes’ from the time of admission; if not, a ‘memory box’ after death can be created. Some units have palliative care pathways set up with the local children’s hospice, and in this case teams from the hospice can engage parents in creative memory making. Post-death rituals such as prayers, photographs (with parental permission), washing, dressing and cuddling their baby are now common practices that offer comfort and engage families in the early expression of grief. Much has been written about not rushing parents at this time. Some may doubt the benefit of parents cuddling their dead baby,11 but bereavement support workers constantly confirm that parents who made the choice to cuddle record this moment as a very precious memory.12,13
Hospice palliative care pathway provision enables the choice for the baby to rest in a hospice cool room. Some parents have reported that this is a preferred option. Hospices can offer a more familyorientated post-death environment. Parents should have the option to take their baby home after death. Staff need to offer this choice and be able to provide the necessary logistical support. For some parents this is a preferred option, particularly if siblings are involved. 7. Palliative care When asked confidentially what is their worst fear on NICU, most parents will reply that they think their baby is going to die. For some, any amount of ‘positive’ communication from the staff will always be doubted, due to the strong death fear. This fear may be stored at the back of the mind as hope begins slowly to emerge. The hope may be minimal for a period of time and then the medical staff have to communicate their belief that life for the baby is unsustainable. Some parents will have difficulty accepting a terminal diagnosis: ‘he is a fighter and will pull through’; other parents will struggle with the painful reality. Psychologically it is an impossible conflict to visit daily to build attachment and yet to be told that the physical attachment has to end. How do family members begin to understand the world of pre-death grieving (anticipatory grief) when they long for more attachment? Parents and family members need time to assimilate the news that their baby is going to die. The initial news imparted to them is likely to be a shock. The hope they may have had has now been undermined. Parents will question the staff about the length of time that they may have with their baby before death. Understandably uncertain answers may be given which increase the potential anxiety. The Bliss publication referred to above5 has been very helpful for parents during the time of assimilation of the news that intensive treatment may be withdrawn. The booklet enables parents to read and re-read the difficult news. Other family members can read the information, thus reducing the need to question parents. Again the local children’s hospice team may be called to support the family. Memory-making and palliative care accommodation for the baby and family are often part of the service provision. Parents need to be well-informed about the options for where they wish their baby to die. Whether the parental decision is for a hospital, a home or a hospice death, adequate time, information and emotional support must be provided. Deciding where their baby will die is a monumental decision for parents e one that will stay with them for the rest of their lives. If there is to be a pre-death transfer to the local children’s hospice, it is essential that the process is seamless. Such transfers demand that there is excellent communication between staff in the hospital, hospice and transport team. Parents’ pre-death grieving is complicated by arrangements that are not clear, or are not carried out in the way that they have been informed. Any expectation by parents that has been created by staff, and is not fulfilled, will be remembered for the rest of the parents’ lives and may be internalised as a failure to care for their baby. 8. Hospital deaths Some parents make the choice for their baby to die in NICU, especially if it is anticipated that the death will occur shortly after the withdrawal of intensive care. However, the environment in NICU is not always best suited for a distressing death and grieving parents. There may be other parents in the room who pick up the distress in the environment and this will be very exposing for the parents of the dying baby. A space with privacy is essential for the
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family, and staff should give some thought to the allocation of an appropriate room. The moments preceding the death are bittersweet for parents. They are likely to have little or no idea how the death will occur. Best practice would be for a member of staff to gently inform the parents of what may occur at the death moment, while also explaining that no one can predict it with any accuracy. I vividly remember being with some parents who had been told that a peaceful death was expected; instead a massive bleed occurred. The visual image of that death remains with the parents after many years. Most NICUs have chaplaincy resources. Many parents, even those who proclaim not to have a religious faith, are grateful for some chaplaincy input. Prayers, baptism and blessing can be a comforting rite of passage for the parents to witness and be part of. Within those rites of passage there is an implied theology that the baby has an existence after death. Whatever name is given to that existence the parents feel that the death of their precious baby is not a ‘dead end’ and often the afterlife language is used with a sense of comfort and continuity. Staff who are alongside parents at such moments may be surprised at their creative expressions, attempting to lessen the harsh reality that their baby has died. The important principle for staff is that they do not question the parents’ belief system nor express their own beliefs, unless specifically asked by the parents.
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consider it good practice to offer parents the choice to accompany their baby to the mortuary with a member of staff in attendance. Practices differ around the transportation of the baby. Some units use a Moses basket, some offer the parents the opportunity to carry their child, others require a member of staff to take the baby, with the knowledge that the appearance of the hospital corridors may be distressing. Parents often need to know what exactly has happened to their baby. In my experience it may be beneficial for parents to take their baby to the mortuary if they wish; they know where their baby is and the reality of the death is acknowledged.10 Transparency with parents is important not only in terms of medical trust and ethics, but also because grieving may be compromised if transparency is not upheld. Parents need to know how they can visit their baby after death. An appointment is usually required to view the baby in a hospital mortuary. Such arrangements are best given to parents in writing, as little is heard and understood at the time of the baby’s death. Families who turn up to see their baby, unaware that appointments have to be made, are likely to be distressed and angry when not ‘allowed to see their baby’. Such occurrences give rise to very strong feelings, resulting in questions such as ‘Whose child is it?’ and ‘What secrets are being kept from them by the authorities?’ Some parents have reported to me that it feels as if their child has been ‘snatched away’. 10. Postmortem
9. Post death The post-death behaviour of parents will be influenced by their emotional/death culture as mentioned above. There is no way of predicting how parents will react. Some will wish to stay and cuddle their baby e it may be a short or a longer cuddle, or it may be so long that staff begin to feel that the parents are not able to separate from their baby. At this moment it is important that staff do not transmit a message of disapproval to such requests by parents. A difficult situation may arise for staff if there is a heavy demand on space, i.e. unit bedrooms. How long is helpful for the parents to stay with the baby? The answer lies with the parents, not with the staff or health care professionals. The emotional struggle of walking away from their precious dead baby is likely to be the worst moment in their lives, a lasting traumatic memory. Staff may well witness the difficulty of parents struggling with the first and second tasks of mourning e facing the reality and expressing the pain10 e a moment not to be rushed. Some parents may want to leave the unit as soon as possible, as a statement of getting away from the area of pain. This may reflect the family death culture, to ‘flee the pain/to distract and move on’ e all words used by parents. Staff need to recognise the behaviour without expressing judgemental attitudes. Many units have a best practice post-death guideline, which includes offering parents a lock of their baby’s hair, the opportunity of bathing and dressing, and taking photographs. Photographs can range from digital pictures taken by the staff and given to the parents either as prints or in digital form, to family group photographs taken by professional photographers. All of these post-death memory-creating tasks can only be carried out with the consent of the parents. Post-death memory tasks are important as they serve two purposes. First, they are precious memories of such a short life. Second, each task relates to the first task of mourning which is essential for the grief journey. At the moment of the death of their baby, parents are likely to be psychologically overwhelmed and unable to believe what is happening. Gentle guidance and explanations from staff may be necessary to explain why memory tasks are an important feature for the present and for the future. Parents have choices after the death of their baby. Some will opt for the baby to be taken to the hospital mortuary. Some hospitals
Although offering a postmortem is considered good practice, it is often a subject not raised with parents. This is a difficult area for some parents. In my own practice parents have reported that they felt that the consultant was asking to ‘cut up our baby’. Medical staff may be well-versed with postmortem language but it is important to acknowledge that the words may provoke very different internal thoughts and images in parents. Some parents will consent with the belief that they will find the reason why their baby died; it never crosses their mind that no reason may be found. Others will recoil from the very thought of a postmortem. All medical staff need to be sensitive to the parents at this time and apply no pressure to conduct a postmortem. In the case of a sudden death the coroner may require a postmortem and parents will need to grapple with the difficult fact that this is the law. 11. Follow-up of parents after the death of their baby The general policy in many hospitals is to provide a follow-up appointment with a consultant around six weeks after the death. In my conversations with parents many have asked why the followup appointment needs to be as long as six weeks or more. The timing of follow-up after bereavement should be reviewed by hospitals. Best practice may be to offer to see the parents as soon as they wish or when the results of the postmortem are received. Much thought has to be given to the venue for the follow-up visits. In some hospitals the follow-up appointment takes place on the NICU. However, in my view this practice should not be followed. To ask parents to enter the unit where the death occurred could be construed as insensitive, and demonstrates a lack of understanding of the grief process. To encounter the sounds and the smells of the ‘death environment’ of their baby will trigger a reliving of the death.14 To return to the hospital will trigger emotions of all the journeys made to NICU and reawaken painful memories. Given the practicalities of follow-up appointments, if they are to occur on hospital premises, it is suggested that the consultations take place away from the maternity and NICU building. In my experience there is often a very low percentage of uptake for bereavement follow-up appointments. From a psychological and grief perspective this may be understandable. Parents may still
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be struggling with the reality and may not wish to engage with the medical facts. There is a potential role for general practitioners in providing follow-up consultations in their surgery. If postmortem information were given in the local surgery, parents would be spared the trauma of returning to the hospital. In the evermore frequent scenario of psychological care being removed from NICUs it is important that the general practitioner is aware of the parents’ distress and can provide counselling and support services. Counselling resources may be available from Bliss and other charities, such as Child Bereavement UK (CBUK), but at the present time even these facilities are limited. 12. Siblings Throughout the NICU journey siblings are an important consideration. Some parents may need guidance on how to assist siblings in coping with a brother or sister in NICU. Others may make the unilateral decision that NICU is too frightening for siblings to visit. It is clear that the degree to which parents communicate with siblings influences how well they cope with the situation.15 Clearly if there has been little communication between parents and siblings while the baby is on the unit then there will be difficulties in explaining the death. The assumption that, if children are not told about illness and death they will not know and not be affected, is now well-evidenced to be erroneous.10 There are, however, families who still believe this false assumption and may react in such a way on NICU. What siblings know is a unique blend of what they have been told, have overheard, observed or imagined.16 There is a large measure of disagreement between what parents think children’s coping strategies are and what children themselves say.17 The work of CBUK and others has clearly demonstrated the psychological dangers of children who imagine in death situations.18,19 Such imagining can often lead to make-belief memories, and dysfunctional thinking and behaviour in later life. It is worth remembering that a sibling will have the longest memory of the death and its effects. Before a death occurs siblings have already had a difficult adjustment to the NICU stay of their brother or sister. They may have experienced physical and emotional isolation and have had difficulty in understanding illness, causing worry about their own vulnerability. Physical symptoms of regression, withdrawal or attention-seeking behaviours may be evident. Kirsti Dyer, herself a doctor, writes about her daughter’s experience in NICU and her own difficulty as a parent to respond to her daughter.20 Hospitals that have shared palliative care pathways with local children’s hospices will be able to draw on the resources and expertise of the hospice teams. For hospitals where no such arrangements exist, internal help may be required. The hospital play teams offer an excellent resource, often building a communication bridge between parents and siblings. If no extra resources are available, there is an unreasonably heavy burden placed upon the unit staff to manage siblings and parents and to provide tender loving care for the dying pre-term. In my experience, early involvement of siblings in the NICU leads to a better outcome. Hospital play teams should be involved as soon as possible, as they can facilitate simple tasks that help bonding between brother and sister and provide opportunities for communication with the sibling from parents and staff. The making of a memory box can involve the sibling with the same useful outcomes. Some parents make a choice to include the sibling at the time of death of the pre-term. Many prefer to have a private parent time until the death has occurred, then to invite the sibling into the room to have a cuddle before cooling occurs. There appears to be little
evidence to demonstrate that this practice is either helpful or harmful. Interviews conducted by CBUK indicate that siblings appreciated the experience. It could be postulated that such involvement helps with the first of Worden’s grieving tasks.10 Siblings react to the death of a brother or sister in ageappropriate ways. Communication with the sibling needs to be in age-appropriate language. Children’s concept of death is bound up with their emotional and cognitive development and parents may well need help in understanding this fact.21 Post-death support groups for siblings offer a unique opportunity for them to express their grief. Limited resources within the hospital may not provide for such a follow-up service, but many hospices have such programmes. Sadly, very few community facilities are available for sibling support, and often siblings are left struggling with their own internal concepts of loss and grief. Charities that work with such children are decreasing in number due to financial constraints. Grief that is not understood or expressed by a sibling may well surface later in behaviours that are deemed as unacceptable by the educational system, without an understanding that the root of such behaviours lies within an unexpressed grief. 13. Grandparents Grandparents can be a forgotten generation in the NICU journey and in the death event. Not only do these members of the family struggle with the loss of their grandchild and the continuity of the family; they also struggle with the role of parenting their own child, who they observe in a great deal of emotional pain. This parenting role can mask their own grief, and grief feelings can be submerged by the caring role. It is often assumed after discharge following a death that grandparents are able to cope, and few resources exist for grandparents following a hospital-based death. Some hospice bereavement teams have focus groups for grandparents that provide an excellent support system. 14. Future pregnancies Parents who have experienced the death of their pre-term baby will never experience another pregnancy without anxiety and fear. Any subsequent pregnancies will always be tainted with significant dates and concerns about history repeating.22 Once the assumptive world of pregnancy has been shattered it is virtually impossible to believe that the nine-month journey could ever go smoothly again. If there is counselling support for parents in NICU, the role of the counsellor often entails subsequent pregnancy support. If the counselling role in NICU is lacking, then parents may not receive the support that is often required. A thoughtful ethical question can be raised here: If it is so well-evidenced that parents emotionally suffer after the death of their baby and in subsequent pregnancies, why is it that so few support mechanisms are in place to meet the needs of parents who request help? Is there not a duty of care on the health providers to respond appropriately? 15. Staff Staff play a major role in supporting parents and families at the time of a pre-term death. This is a role that requires much in the way of practical knowledge and emotional maturity. It is a role frequently considered to be merely part of the work, with little offered in the way of grief and loss training. Learning opportunities are not always available, and despite BAPM recommendations, multi-disciplinary debriefs seldom take place after a death.23 It is acknowledged that staff do become attached to the babies that are being nursed, some more than others. Staff are emotionally affected
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by the death of a pre-term that they have cared for. The dual role of handling their own feelings and helping the parents and families in the death situation is a demanding one. Support for staff in these situations is not always recognised or available. 16. Funerals Arranging a funeral for a much-wanted and planned-for baby is a difficult demand for parents. As with all funeral rites of passage there are so many practical questions that need to be answered, usually within 10e14 days of the death. Questions such as ‘Burial or cremation?’, ‘What do we dress baby in?’, ‘What can or cannot be placed in the coffin?’. The emotional pressure on parents is huge. At this time some unusual behaviours can surface, as a result of the overload of emotions and the need to feel that the baby is well cared for after death. Any promises made about after death care must be fulfilled. I remember a funeral director assuring a mother that her child would never be alone when transporting the baby from the mortuary to the funeral home. It later emerged that the baby was transported in the back of a white delivery van. To this day the mother still has nightmares of the scene. Hospital chaplains and bereavement staff within the hospital may be of great help to parents at this time. Many parents without any stated faith appreciate loving support from chaplains. Indeed hospital chaplains often conduct baby funerals. Their experience and sensitivity are often vital on an otherwise very difficult day for families. This can potentially lead to chaplains conducting many baby funerals in a week, at a significant emotional cost to themselves. Support structures for chaplains need constant reviewing. Families may often wonder whether siblings should attend the funeral. Such a question will be answered in ways that reflect the family death culture. Some parents shrink away from having to explain a cremation to siblings. Sometimes parents want to give a choice to the sibling as to whether they attend the funeral or not. It is important to remember that the sibling may have no understanding of what a funeral is. A precursor to asking about attendance is to inform the sibling, in age-appropriate language, what happens at a funeral. This is not an expected role of parenthood, so help may be required. The listening work of CBUK demonstrated that many children can manage post-death rites of passage if their questions are answered factually and sensitively, in ageappropriate language.24 It is likely that the questions will be repeated as the sibling’s physical and emotional development takes place over the years. Parents may need a point of contact for support at these times. Parents who choose burial for their baby may encounter what they perceive as ‘less than helpful’ regulations at cemeteries or churchyards. Many churchyards have strict regulations about the design and content of grave headstones. Turmoil may result if parents consult a religious representative only to discover that what they would like as a permanent memorial to their baby is not allowed. Some churchyards will not permit headstones that depict teddy bears, some church regulations will not entertain any symbol or wording that is not Christian. Difficult discussions may take place, and to grieving parents it can appear that the memory of their baby is not being sensitively respected. Parents may need some support in these matters. If no such support is available then the twists and turns of the early grief journey are heart-rending. It is remarkable that so little coordinated post-death follow-up is available throughout the UK.
how the dismantling process takes place represent the painful difficulties of the third task of mourning as expressed by Worden.10 Anniversary services may be offered by hospital chaplaincy services, by hospices or by some enlightened churches. Attendances are frequently large, suggesting that these services offer comfort to the parents. More research is needed to ascertain whether these services facilitate or impede the resolution of grief.
18. Conclusion The birth of a pre-term baby is likely to cause emotional and psychological distress for the parents. The ensuing multiple grief will have an effect on communication and coping strategies for parents. If the outcome of the NICU experience is that the baby dies, another irreversible layer of grief is added to the parents’ experience. Their reproductive assumptive world has been shattered and for some the outcome may lead to post-traumatic stress disorder. The ability of parents to handle the trauma will depend upon their emotional resources, their family loss/death culture and the support they receive from professionals with appropriate grief training. Their grief journey will be evident to staff on the NICU and will continue long after discharge. It is recommended that well-developed, robust and sustainable support programmes should be available to all parents who request help. Such programmes should be clearly identified within NICU as set out in BAPM guidelines for Level 3 NICUs.9 As part of the demonstration of duty of care, programmes should be available to parents pre death, post death and after discharge, to facilitate grieving and support of subsequent pregnancies. The support work by Bliss, CBUK and many other charities is excellent, yet large numbers of parents cannot access the service when they need it. The health of parents following a pre-term death is compromised if adequate support services are not available.25 It is surprising that in the twenty-first century, when so much is known about physical and emotional wellbeing and the consequences of trauma, that so many parents are denied professional support as a result of lack of resources. How can hospitals increase NICU cot capacity, ignore the BAPM recommendations and reduce emotional support? Future generations may observe that a vital link in the chain of care for parents of pre-term babies was broken, leading to more psychological distress for parents.
Research directions The effect on parents’ mental/physical wellbeing when there is a lack of ongoing support around the time of the death of their pre-term baby. A measurement of the mental/psychological wellbeing of parents who have taped copies of withdrawal of intensive care conversations with a consultant versus those who have no taped material. The helpfulness, or otherwise, of anniversary services as part of the grief process. The levels of anxiety in parents during the next pregnancy following the death of a pre-term baby.
17. Adjustment at home and beyond Conflict of interest statement Nurseries that have been prepared for the baby are no longer going to be used for the intended purpose. By whom, when and
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None declared.
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Funding sources None. References 1. Woodroffe I. In: Pfund R, Fowler-Kerry S, editors. Perspectives on palliative care for children and young people. Oxford: Radcliffe Medical Press; 2010. p. 252e68. 2. Kauffman J, editor. Loss of the assumptive world: a theory of traumatic loss. New York: Brunner Routledge; 2002. 3. www.birthtraumaassociation.org.uk. 4. Sparshott MM. Pain, distress and the new born baby. Oxford: Wiley/Blackwell; 1997. p. 149. 5. Bliss. Making critical care decisions for your baby. 2nd ed. 2011. www.Bliss. org.uk. 6. Koh TH, Butow PN, Coory M, et al. Provision of taped conversations with neonatologists to mothers of babies in intensive care: randomised control trial. BMJ 2007;334:28 [Epub 2006 Dec 1]. 7. Brian T, Sparshott MM. Relating to relatives. Oxford: Radcliffe Medical Press; 1996. 8. Klaus MH, Kennell JH. Parenteinfant bonding. St Louis: Mosby; 1976. 9. British Association of Palliative Medicine. Service standards for hospitals providing neonatal care. 3rd ed. London: BAPM; 2010. 6.5. 10. Worden JW. Grief counselling and grief therapy: a handbook for the mental health practitioner. New York: Springer; 2009. 11. National Institute for Health and Clinical Excellence. Publications.nice.org.uk/ antenatal-postnatal-mental-health-cg45/changes-since publication. 12. Department of Health. Care and respect in death: good practice guidance for NHS mortuary staff. Gateway 6831. London: DOH; 2006.
13. Geerinck-Vercammen R. With positive feeling: the grief progress after a stillbirth in relation to the role of professional caregivers. Eur J Obstet Gynecol 1999;87:119e21. 14. Cowles KV. Cultural perspectives on grief: an expanded concept analysis. J Adv Nurs 1996;23:287e94. 15. Kramer R, Moore I. Childhood cancer: meeting the special needs of healthy siblings. Cancer Nurse 1983;6:213e7. 16. Lobato DR. Brothers, sisters and special needs: information and activities for helping young siblings of children with chronic illnesses and developmental disabilities. Baltimore: Paul H. Brooks; 1990. 17. Walker C. Stress and coping in siblings of childhood cancer patients. Nurs Res 1988;37(4):208e12. 18. Child Bereavement UK. Talking to children when a baby dies. Information sheet. Saunderton, UK: CBUK; 2010. 19. Rector L. Supporting siblings and their families during intensive baby care. Baltimore: Paul H. Brookes; 2007. p. 31. 20. Dyer KA. Grieving parents in the NICU, Part 1 & Part 2. Neonatal Netw May/June 2005;24(3). 21. Brown E. Loss change and grief: an educational perspective. Abingdon, Fulton: David Fulton Publishers; 1999. 22. McHaffie HE, Laing IA, Lloyd DJ. Follow up care of bereaved parents after treatment withdrawal from newborns. Archs Dis Childh Fetal Neonat Ed 2000;84:125e8. 23. British Association of Palliative Medicine. Palliative care (supportive and end of life care): a framework for clinical practice in perinatal medicine. London: BAPM; 2010. 24. Child Bereavement UK. Explaining funerals, burial and cremation to children. Information sheet. Saunderton, UK: CBUK; 2010. 25. Gold KJ. Navigating care after a baby dies: a systematic review of parent experiences with health providers. J Perinatol 2007;27:230e7.