- Email: [email protected]
Multiple losses in Neonatal Intensive Care Units
Journal of Neonatal Nursing (2006) 12, 144e147
www.intl.elsevierhealth.com/journals/jneo
Multiple losses in Neonatal Intensive Care Units Ian Woodroffe Available online 11 May 2006
KEYWORDS Loss; Grief; Bereavement; Multiple grief; Psychological care in NICU; Development; Emotional support; Journey box; Bonding; Parent’s world in NICU
Abstract In this article the author explores the topic of multiple grief experienced by parents who have a baby in a Neonatal Intensive Care Unit. Support of parents is, in some units, offered after the death of the baby. In this article the author makes a case for an understanding of a grief process that can overwhelm parents even if a death has not occurred and he suggests an understanding of this process can facilitate better care of the parents if a death should occur. ª 2006 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
In terms of ‘human givens’ there are certainly two. Firstly that the physical state of the human being is linked to their emotional well-being. Physical symptoms are well documented when the sensation of emotional distress is experienced (Rossi, 1993). The second given is that there are reactions to loss which are physical and emotional. The large quantity of grief research and literature records such symptoms (Linderman, 1944). In the Neonatal Intensive Care world emphasis has often been placed on supporting parents after the death of their baby. Hence bereavement counselling posts have been created and in some instances the job description of the counsellor only
E-mail address: [email protected]
allows him/her to work with grief after death. Important as these posts are such appointments limit the vision of the whole picture of losses experienced by parents. By working only with loss after death the Counsellor is only looking at one small part of the whole picture. It is regrettable that comprehensive important work is often limited by finance rather than well thought through psychological rationale. What is clear from the experience of most parents with a baby in a NICU is that they are experiencing trauma and multiple losses. Martina Jotzo and Christian F Poets acknowledge that following neonatal intensive care psychological distress can have a traumatising effect on parents. They also concluded that psychological intervention with parents made a difference to the outcome (Jotzo and Poets, 2005). It can be demonstrated that multiple losses have been experienced before the baby arrives in NICU and are compounded on admission.
1355-1841/$ - see front matter ª 2006 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2006.03.004
Multiple losses in Neonatal ICU Table 1 lists the multiple losses that may have been experienced. Brazelton TB and Cramer BG acknowledge that when the pregnancy is cut short parents feel raw and incomplete and where there are physical complications, the parents psychological adjustment may be endangered (Brazelton and Cramer, 1991). Obviously not all Mothers will experience all these losses but to experience one or more will potentially cause emotional turmoil. At the time of a pre-term birth little or no history of previous losses within the family may be known by the staff of the unit. Very few NICUs use genograms when taking details from parents. Previous pregnancy losses may be known but it is unlikely that previous adult losses will have been recorded. For instance it may not be known that the Mother’s sister committed suicide one year ago. Such previous losses will affect the way that the multiple griefs are expressed and will compound the loss process whilst in the unit. Such a history of ‘other losses’ would become evident if there was a routine use of genograms. The feelings associated with the kind of losses listed in Table 1 may be powerful for both parents. Table 2 lists the possible feelings associated with multiple losses. As with the losses in Table 1 not all the feelings will be experienced but any one, or a combination of more than one, will provide an uncomfortable existence. It is also recognised that in the mixture of feelings there may be excitement, hope and pride. Positive feelings are, however, sometimes difficult to express in the multiple loss situation. Friends and family may emphasise positive thinking but for the parents the trauma of multiple loss and the potential vulnerability may prevent positive outlooks. The multiple loss world of parents can be overwhelming at the very time that they set foot into the totally new environment of the NICU where there are so many unknown procedures, noises and pieces of equipment. As there are known reactions to loss there will almost certainly be discernable
Table 1 A A A A A A A A
145 Table 2 A A A A A
Feelings in multiple grief
Anger Helplessness Guilt Resentment Fear
A A A A A
Isolation Frustration Panic Despair Confusion
A A A A
Devastation Disorientation Exhaustion Worry
behaviours that accompany the experience of multiple grief and the feelings of the parents. Possible behaviours are listed in Table 3. A combination of the multiple losses, the feelings and the behaviours may lead parents into a very complex and confusing inner world which is not only difficult for them to understand but almost impossible for them to communicate to those around them. Underlying these complex feelings is the ultimate nightmare at the back of the mind that whatever anyone tells them their baby may die. In such situations it is not surprising that for some parents there is a real fear of attachment to their baby for fear of the sudden pain of separation. Bowlby’s thesis is that attachments come for a need for security and safety and that if any situation endangers the bond then there will be specific reactions. The experience of a baby in NICU can, if multiple losses are experienced, endanger the attachment and we can expect parental reactions (Bowlby, 1977). Parents who were asked to describe the experience of their baby coming in a NICU were very able to articulate the experience. Table 4 lists some of the responses given by parents. The experience of multiple loss and all the subsequent consequences should be considered in the light of bereavement theory. Worden’s tasks of mourning (Worden, 2001) provide one framework, amongst many, to consider the multiple loss experience in a NICU. His four tasks are: 1. To accept the reality of the loss. 2. To work through the pain of grief. 3. To adjust to the environment in which the deceased is missing.
Losses around pre-term delivery
The lost weeks of the pregnancy The dreams of a perfect birth Control over the birth process Confidence as a Mother Normal parenting Holding and touching at the time of birth Understanding Possible loss of breast feeding
Table 3 A
A A A
Potential behaviours
Withdrawal from A baby, partner, fam- A ily and friends and A staff in the NICU Tearful Defensive Bravefaced
A Aggressive Angry A Shocked Numbness Apparent obsession with needing to have knowledge
146 Table 4 A A A
I. Woodroffe Parental responses
Terrifying Unreal Lonely
A A A
Hell-on-earth Devastating Scary
A A A
Dream-like Unattached Guilty
4. To emotionally relocate the deceased and move on with life. In the complex situation of the multiple losses that parents may face there is often a difficulty in acknowledging the reality of all the losses both at an intellectual level and at an emotional level. The focus of care from the staff of the Unit and the intense loving from the parents in the situation means that there may be little or no cognitive or emotional energy to acknowledge the reality. Often the speed of the premature birth scenario contributes to the sense of unreality for the parents and family. If one of the tenants of Worden’s theory is the acceptance of reality it can be expected that within the NICU situation parents will really struggle with this concept. The muted parents who have a slightly glazed look in their eyes demonstrate that reality is far from being accepted. Not surprisingly parents may register that being in a NICU is a dream-like experience. There is often little time and opportunity to work through the pain of the loss. At best we can acknowledge that for parents the pain breaks through usually when they are not in the Unit, for being in the Unit can be very exposing with so many other people around. But even expressing that pain can be complex for it depends on the culture of emotional expression within the family and it may depend for Fathers on how free they feel able to express pain. Fathers may hide the pain in order to protect the Mother. If the second task of the grief process is to be attended to for eventual healthy resolution NICUs have to consider how the parents are helped and who in the Unit has the necessary skills to engage in this work. The environment may not be one in which the deceased is missing although if the baby dies this is a very relevant task of mourning. For the parents of a baby who is alive in NICU there is still the task of managing an environment in which a great deal is missing. Some or all the potential losses (listed in Table 1) create a difficult environment and working with these specific losses and behaviours may well challenge staff in NICUs. As there may be so many losses it is unlikely that parents will be able to adjust to the environment that contains the losses
without a great deal of support from a person who is not personally experiencing the losses. To emotionally relocate the deceased is a long and painful process that may involve help after a baby has died. To facilitate that process it is helpful to have a seamless transfer of psychological help between the NICU and agencies in the community. The elements of seamless transfer should also exist between hospitals if a live baby is transferred to another NICU in the country. There is little evidence that the elements of seamless transfer for psychological care exist. Silverman et al. (1996) in their work on Continuing Bonds make a strong case for rituals that continue the bond between the deceased and the parent and sibling. Rituals and Transitional Objects assume large importance for the survival of the bond. In the NICU situation where the bond, because of the multiple losses and the fragile environment, may be difficult to establish there is an important question to ask what can be done to facilitate the bond? Clearly for years there have been rituals around the death of a baby with memory boxes, hand and footprints, photographs, etc. In the happy event of a baby being alive in NICU what can be done to facilitate bonding? A great deal of important work has been done by Dr B Brazelton in this field and the report of a recent research project adds some interesting observations in this area of work. Beal (1986) contributes helpfully to the observations in the attachment debate. Memory boxes are helpful as a post-death container of transitional objects but why in the scenario of multiple losses do many Units wait until there is a death? In the NICU at the Rosie Hospital we embrace the concept of the journey box whereby transitional objects are kept from day two of birth. Such objects are current photographs, jottings of thoughts and feelings of the parents on the experience (if they wish to keep such a record) as well as name-tags, hats small pieces of medical equipment that would otherwise have been thrown away. A journey box engages parents with the reality of the moment, creates significant memories that may be forgotten because of the traumatic nature of the memory, ritually aids bonding between the baby and the parents and may facilitate expression of feelings, which enable the pain to be expressed, hence helping Worden’s second task. A strong feature of the journey box is that it provides for future bonding in conversation between the child and parent at a much later age. The provision of the journey boxes clearly demonstrates a commitment from the Unit to the parents that an understanding of multiple losses and the emotional well-being of
Multiple losses in Neonatal ICU families is part of the multi-disciplinary approach to care in a NICU. In the important area of psychological care of parents with multiple losses it becomes a necessity that NICUs consider the resources that are available for such work. Counsellors that only work with post-death loss will be helpful but not as beneficial as those who can and do work with the many losses that may not include death. Clearly professional standards and training are required for such work and supervision from an external supervisor who is experienced in grief and loss work is an essential safety line. Not only is it important that this work in NICUs is carried out to high professional standards but it is essential that such work can be transferred on discharge to agencies in the community who have high professional standards and who can show that they are maintaining those standards by some form of annual audit. There is a need for a national framework of such competency audits. There is much work still to be done to research the beneficial effect of good psychological care in NICUs and in the Community on the effect of the development of the child and the continual growth of the bonding between parents and children.
147 What is possible is that in those situations where the multiple losses are not attended to, as with unattended grief in adult grieving, behavioural symptoms occur later and it then becomes much harder to work with the loss issues. It may be that some parents become stuck in the loss process and that can have devastating consequences for parenting.
References Beal, J., 1986. The Brazelton neonatal behavioural assessment scale. Journal of Pediatric Nursing 1, 170e177. Bowlby, J., 1977. The making and breaking of affectional bonds. I and II. The British Journal of Psychiatry 130, 201e210, pp. 421e431. Brazelton, T.B., Cramer, B.G., 1991. The Earliest Relationships Parents, Infants and the Drama of Early Attachment. Karnac. Jotzo, Martina, Poets, Christian F., April 2005. Pediatrics 115 (4), 915 Part 1. Linderman, E., 1944. Symptomatology and management of acute grief. The American Journal of Psychiatry, 141e148. Rossi, E.L., 1993. The Psychobiology of MindeBody Healing. Norton. Silverman, P., et al., 1996. Taylor and Francis, Continuing Bonds. Worden, J.W., 2001. Grief Counselling and Grief Therapy. Brunner-Routledge.
www.intl.elsevierhealth.com/journals/jneo
Multiple losses in Neonatal Intensive Care Units Ian Woodroffe Available online 11 May 2006
KEYWORDS Loss; Grief; Bereavement; Multiple grief; Psychological care in NICU; Development; Emotional support; Journey box; Bonding; Parent’s world in NICU
Abstract In this article the author explores the topic of multiple grief experienced by parents who have a baby in a Neonatal Intensive Care Unit. Support of parents is, in some units, offered after the death of the baby. In this article the author makes a case for an understanding of a grief process that can overwhelm parents even if a death has not occurred and he suggests an understanding of this process can facilitate better care of the parents if a death should occur. ª 2006 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
In terms of ‘human givens’ there are certainly two. Firstly that the physical state of the human being is linked to their emotional well-being. Physical symptoms are well documented when the sensation of emotional distress is experienced (Rossi, 1993). The second given is that there are reactions to loss which are physical and emotional. The large quantity of grief research and literature records such symptoms (Linderman, 1944). In the Neonatal Intensive Care world emphasis has often been placed on supporting parents after the death of their baby. Hence bereavement counselling posts have been created and in some instances the job description of the counsellor only
E-mail address: [email protected]
allows him/her to work with grief after death. Important as these posts are such appointments limit the vision of the whole picture of losses experienced by parents. By working only with loss after death the Counsellor is only looking at one small part of the whole picture. It is regrettable that comprehensive important work is often limited by finance rather than well thought through psychological rationale. What is clear from the experience of most parents with a baby in a NICU is that they are experiencing trauma and multiple losses. Martina Jotzo and Christian F Poets acknowledge that following neonatal intensive care psychological distress can have a traumatising effect on parents. They also concluded that psychological intervention with parents made a difference to the outcome (Jotzo and Poets, 2005). It can be demonstrated that multiple losses have been experienced before the baby arrives in NICU and are compounded on admission.
1355-1841/$ - see front matter ª 2006 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2006.03.004
Multiple losses in Neonatal ICU Table 1 lists the multiple losses that may have been experienced. Brazelton TB and Cramer BG acknowledge that when the pregnancy is cut short parents feel raw and incomplete and where there are physical complications, the parents psychological adjustment may be endangered (Brazelton and Cramer, 1991). Obviously not all Mothers will experience all these losses but to experience one or more will potentially cause emotional turmoil. At the time of a pre-term birth little or no history of previous losses within the family may be known by the staff of the unit. Very few NICUs use genograms when taking details from parents. Previous pregnancy losses may be known but it is unlikely that previous adult losses will have been recorded. For instance it may not be known that the Mother’s sister committed suicide one year ago. Such previous losses will affect the way that the multiple griefs are expressed and will compound the loss process whilst in the unit. Such a history of ‘other losses’ would become evident if there was a routine use of genograms. The feelings associated with the kind of losses listed in Table 1 may be powerful for both parents. Table 2 lists the possible feelings associated with multiple losses. As with the losses in Table 1 not all the feelings will be experienced but any one, or a combination of more than one, will provide an uncomfortable existence. It is also recognised that in the mixture of feelings there may be excitement, hope and pride. Positive feelings are, however, sometimes difficult to express in the multiple loss situation. Friends and family may emphasise positive thinking but for the parents the trauma of multiple loss and the potential vulnerability may prevent positive outlooks. The multiple loss world of parents can be overwhelming at the very time that they set foot into the totally new environment of the NICU where there are so many unknown procedures, noises and pieces of equipment. As there are known reactions to loss there will almost certainly be discernable
Table 1 A A A A A A A A
145 Table 2 A A A A A
Feelings in multiple grief
Anger Helplessness Guilt Resentment Fear
A A A A A
Isolation Frustration Panic Despair Confusion
A A A A
Devastation Disorientation Exhaustion Worry
behaviours that accompany the experience of multiple grief and the feelings of the parents. Possible behaviours are listed in Table 3. A combination of the multiple losses, the feelings and the behaviours may lead parents into a very complex and confusing inner world which is not only difficult for them to understand but almost impossible for them to communicate to those around them. Underlying these complex feelings is the ultimate nightmare at the back of the mind that whatever anyone tells them their baby may die. In such situations it is not surprising that for some parents there is a real fear of attachment to their baby for fear of the sudden pain of separation. Bowlby’s thesis is that attachments come for a need for security and safety and that if any situation endangers the bond then there will be specific reactions. The experience of a baby in NICU can, if multiple losses are experienced, endanger the attachment and we can expect parental reactions (Bowlby, 1977). Parents who were asked to describe the experience of their baby coming in a NICU were very able to articulate the experience. Table 4 lists some of the responses given by parents. The experience of multiple loss and all the subsequent consequences should be considered in the light of bereavement theory. Worden’s tasks of mourning (Worden, 2001) provide one framework, amongst many, to consider the multiple loss experience in a NICU. His four tasks are: 1. To accept the reality of the loss. 2. To work through the pain of grief. 3. To adjust to the environment in which the deceased is missing.
Losses around pre-term delivery
The lost weeks of the pregnancy The dreams of a perfect birth Control over the birth process Confidence as a Mother Normal parenting Holding and touching at the time of birth Understanding Possible loss of breast feeding
Table 3 A
A A A
Potential behaviours
Withdrawal from A baby, partner, fam- A ily and friends and A staff in the NICU Tearful Defensive Bravefaced
A Aggressive Angry A Shocked Numbness Apparent obsession with needing to have knowledge
146 Table 4 A A A
I. Woodroffe Parental responses
Terrifying Unreal Lonely
A A A
Hell-on-earth Devastating Scary
A A A
Dream-like Unattached Guilty
4. To emotionally relocate the deceased and move on with life. In the complex situation of the multiple losses that parents may face there is often a difficulty in acknowledging the reality of all the losses both at an intellectual level and at an emotional level. The focus of care from the staff of the Unit and the intense loving from the parents in the situation means that there may be little or no cognitive or emotional energy to acknowledge the reality. Often the speed of the premature birth scenario contributes to the sense of unreality for the parents and family. If one of the tenants of Worden’s theory is the acceptance of reality it can be expected that within the NICU situation parents will really struggle with this concept. The muted parents who have a slightly glazed look in their eyes demonstrate that reality is far from being accepted. Not surprisingly parents may register that being in a NICU is a dream-like experience. There is often little time and opportunity to work through the pain of the loss. At best we can acknowledge that for parents the pain breaks through usually when they are not in the Unit, for being in the Unit can be very exposing with so many other people around. But even expressing that pain can be complex for it depends on the culture of emotional expression within the family and it may depend for Fathers on how free they feel able to express pain. Fathers may hide the pain in order to protect the Mother. If the second task of the grief process is to be attended to for eventual healthy resolution NICUs have to consider how the parents are helped and who in the Unit has the necessary skills to engage in this work. The environment may not be one in which the deceased is missing although if the baby dies this is a very relevant task of mourning. For the parents of a baby who is alive in NICU there is still the task of managing an environment in which a great deal is missing. Some or all the potential losses (listed in Table 1) create a difficult environment and working with these specific losses and behaviours may well challenge staff in NICUs. As there may be so many losses it is unlikely that parents will be able to adjust to the environment that contains the losses
without a great deal of support from a person who is not personally experiencing the losses. To emotionally relocate the deceased is a long and painful process that may involve help after a baby has died. To facilitate that process it is helpful to have a seamless transfer of psychological help between the NICU and agencies in the community. The elements of seamless transfer should also exist between hospitals if a live baby is transferred to another NICU in the country. There is little evidence that the elements of seamless transfer for psychological care exist. Silverman et al. (1996) in their work on Continuing Bonds make a strong case for rituals that continue the bond between the deceased and the parent and sibling. Rituals and Transitional Objects assume large importance for the survival of the bond. In the NICU situation where the bond, because of the multiple losses and the fragile environment, may be difficult to establish there is an important question to ask what can be done to facilitate the bond? Clearly for years there have been rituals around the death of a baby with memory boxes, hand and footprints, photographs, etc. In the happy event of a baby being alive in NICU what can be done to facilitate bonding? A great deal of important work has been done by Dr B Brazelton in this field and the report of a recent research project adds some interesting observations in this area of work. Beal (1986) contributes helpfully to the observations in the attachment debate. Memory boxes are helpful as a post-death container of transitional objects but why in the scenario of multiple losses do many Units wait until there is a death? In the NICU at the Rosie Hospital we embrace the concept of the journey box whereby transitional objects are kept from day two of birth. Such objects are current photographs, jottings of thoughts and feelings of the parents on the experience (if they wish to keep such a record) as well as name-tags, hats small pieces of medical equipment that would otherwise have been thrown away. A journey box engages parents with the reality of the moment, creates significant memories that may be forgotten because of the traumatic nature of the memory, ritually aids bonding between the baby and the parents and may facilitate expression of feelings, which enable the pain to be expressed, hence helping Worden’s second task. A strong feature of the journey box is that it provides for future bonding in conversation between the child and parent at a much later age. The provision of the journey boxes clearly demonstrates a commitment from the Unit to the parents that an understanding of multiple losses and the emotional well-being of
Multiple losses in Neonatal ICU families is part of the multi-disciplinary approach to care in a NICU. In the important area of psychological care of parents with multiple losses it becomes a necessity that NICUs consider the resources that are available for such work. Counsellors that only work with post-death loss will be helpful but not as beneficial as those who can and do work with the many losses that may not include death. Clearly professional standards and training are required for such work and supervision from an external supervisor who is experienced in grief and loss work is an essential safety line. Not only is it important that this work in NICUs is carried out to high professional standards but it is essential that such work can be transferred on discharge to agencies in the community who have high professional standards and who can show that they are maintaining those standards by some form of annual audit. There is a need for a national framework of such competency audits. There is much work still to be done to research the beneficial effect of good psychological care in NICUs and in the Community on the effect of the development of the child and the continual growth of the bonding between parents and children.
147 What is possible is that in those situations where the multiple losses are not attended to, as with unattended grief in adult grieving, behavioural symptoms occur later and it then becomes much harder to work with the loss issues. It may be that some parents become stuck in the loss process and that can have devastating consequences for parenting.
References Beal, J., 1986. The Brazelton neonatal behavioural assessment scale. Journal of Pediatric Nursing 1, 170e177. Bowlby, J., 1977. The making and breaking of affectional bonds. I and II. The British Journal of Psychiatry 130, 201e210, pp. 421e431. Brazelton, T.B., Cramer, B.G., 1991. The Earliest Relationships Parents, Infants and the Drama of Early Attachment. Karnac. Jotzo, Martina, Poets, Christian F., April 2005. Pediatrics 115 (4), 915 Part 1. Linderman, E., 1944. Symptomatology and management of acute grief. The American Journal of Psychiatry, 141e148. Rossi, E.L., 1993. The Psychobiology of MindeBody Healing. Norton. Silverman, P., et al., 1996. Taylor and Francis, Continuing Bonds. Worden, J.W., 2001. Grief Counselling and Grief Therapy. Brunner-Routledge.