Focus Expand Think through the following two scenarios and how you might respond: 1. A baby has died and the parents look to you, the doctor, for guidance as to what happens next. It may seem that nothing more can be done, that you as the doctor have failed. The parents appear shocked and unable to grasp what has happened. Do you… a) Acknowledge how distressing this must be for them and advise them to go home to their family for comfort and support in their own environment. b) Acknowledge the sadness of the situation and allow the parents to see your sadness. Make suggestions, offering them choices as to what they might like to do next for their dead baby, with or without you. c) Tell them you know how they feel and that it is best to limit the time they spend with their dead baby as it may be too difficult to let go later. 2. A child in your care has died after being in hospital for a week and you are aware there are siblings aged 3 and 5 who are at home with grandparents. The parents are unsure as to what is appropriate for their other children. Do you… a) Explain that children can be included around the death of their sibling, but that it is inadvisable for ones so young. b) Explain to the parents that children of this age have little understanding of death and are best at home, away from the sadness of the situation and protected from the depth of their parents’ raw feelings c) Say to the parents that it is natural to want to protect children from such sad situations, but children pick up much more than we give them credit for. Children who are included and told what to expect generally manage well, only tending to make up what they are not told.
Parents say - Jim and Elspeth Expand Click below to play video, which will open in a new browser tab.
Presentation Expand At the time of informing parents that their baby or child has died, inform them what steps will be taken next. Parents in shock will feel confused, and may be unable to absorb much; they will need direction and guidance. No matter how planned or discussed, all deaths cause shock and an element of disbelief. Parents need to be given the choice to participate in the care of their child as much as they wish after the death. They may need support to do this. Time needs to be available for them to be with their child before he/she is transferred from the ward/unit. Don’t hurry parents; allow them as much time as they need, alone or with siblings, grandparents, family and friends. This time is an important part of their grieving process. Make appropriate private space available where parents can be with their child. Fathers and mothers may not know how to be with their dead child. Watching you, observing your sensitivity and interactions with their child may encourage them to be involved. Help them to talk about how they feel, to cry, to speak to their child, to express their emotions, if they want to. Your emotions matter to parents, they show you care. Explain how they can return and contact you if they have any further questions, and how to make arrangements if they would like to see their child again. Memories Creating memories can be invaluable to the parents, to siblings and to the rest of the family. Some units introduce the concept of a Journey Box for memory objects before the death, other units may create a memory box with the family after death. All memory-making in any form must include, and be with the permission of, the child’s parents. Siblings can be involved with choices. It is important to check with parents what they would like to keep, ensuring their wishes and their culture is respected. Always tell the truth. Honesty is a vital ingredient and establishes trust in you as a member of the professional team. Tell parents everything you know about their child’s death. Be honest about what you don’t know. Suggest you can seek the information or ask relevant colleagues to speak to parents. Post-mortem examination Often, one of the most difficult conversations is around post-mortem examination. Some parents have told us of their regret that the opportunity to have a post-mortem was not discussed. When offering this as a choice to parents or when a coroner’s autopsy is necessary, sensitive communication and explanation is paramount. Further guidance for you as the professional can be found in Module 4 and in the Human Tissue Authority Code of practice 3: Post-mortem examination. Key points All deaths can cause shock and disbelief Encourage parents to participate as much as they wish after their child’s death Don’t hurry them Make appropriate private space available Your tenderness with their child shows parents you care Your emotions matter to parents Create an atmosphere where parents can talk, cry, speak to their child, if they choose to Help parents create keepsakes Enable parents to bath and dress their child Remember siblings can be involved
Grief theory Expand There are two research-based models that are especially helpful in understanding child bereavement. The first is J William Worden’s Tasks of Mourning JW Worden (Grief Counselling and Grief Therapy, 4th Edition 2009 Springer New York). The other model is presented in Module 3. The bereavement model is offered to you in summary. The full text is easy to read and is recommended as further reading to inform your practice. Professor William Worden stresses that mourning, which he defines as the emotional process that occurs after a loss, is an essential and necessarily painful healing process which is achieved through a series of tasks Worden 2009. Worden’s tasks There are four tasks that are addressed over an extended period of time and not in any sequential order. In your dealings with parents they and you will be grappling with tasks 1 and 2. Your interventions with parents will be theoretically underpinned by this researched evidence. Accept the reality of the loss Process the pain of grief Adjust to a world without the deceased Find an enduring connection with the deceased 1. To accept the reality of the loss Initially the bereaved person is likely to be in a state of shock and numbness, even when a death has been anticipated. This can be manifest as over-reaction, whereby the bereaved person feels faint, cries uncontrollably, becomes hysterical or collapses. However, often the antithesis is seen and the person may display no emotion at all, appearing very controlled, calm and detached. A person’s culture may also determine their response at this time. This initial shock may last several days and usually allows the bereaved person to deal with all the necessary practicalities and cope with the funeral without losing control – a form of emotional protection. It is important that the bereaved person gradually accepts the death of this significant person in their life, and the fact that they can never return, in order to allow them to begin the task of adjustment. Some people may not immediately be able to acknowledge what has happened and may cope by denying it or refusing to talk about it. Being involved and consulted as much as possible before the death underlines the difficult reality and although honest conversations may be hard for you, research shows they are helpful. Maybe to see their dead baby or child, or to bath, dress and hold them for as long as they require, reinforces the reality. Being involved as much as possible in preparations for the funeral, and observing rituals and traditions, all assist people to face the reality of what has happened. Families from minority ethnic groups may need acknowledgment of, and support for, the mourning rituals appropriate to their culture. If you are unsure, ask the parents what their cultural observances are. 2. To process the pain of grief Your experience of the parents’ emotions may be limited due to the trauma and shock they are experiencing. Once the numbed feeling subsides (this may take a long time) and the full reality of what has happened is experienced, the bereaved person may have intensely painful feelings, which may last weeks or months or years. Their grief may overwhelm them so that they are incapable of thinking about anything or anybody else but themselves and how they feel. It gets in the way of everything they think and do. They may over-react to other people’s comments and appear irritable. Susan Hill, a writer and a bereaved mother, eloquently described her extreme sensitivity as “having one skin less”. As well as feelings of extreme sadness, the bereaved may have a whole mixture of intense emotions. Some people struggle with guilt about some aspect of their relationship with the dead person. Perhaps they had left unsaid their true feelings, or said things they didn’t really mean. Maybe they had not spent enough time with them or really listened. Feelings of anger can be extremely powerful. The bereaved person may feel anger towards the dead person; anger for the loss of control that death brings; anger at their god for letting it happen. They may feel resentful towards a family member who they feel contributed in some way to the death. Grief is not a mental illness, although sleeplessness, anxiety, fear, anger and a preoccupation with self can all add up to a feeling of ‘going mad’. These feelings are natural, and when experienced and expressed will become less frequent and begin to subside over time. Talking about them and bringing them into the open is helpful. Expressing grief is cathartic and attempts to short-circuit these feelings rarely help in the long term. If grief is denied, deep-seated problems may occur in the years ahead and psychological help may be needed. Tasks 3 and 4 are included below for your learning, although they are not tasks that will be immediately attended to by parents at the time of the death of a child or baby. 3. To adjust to a world without the deceased Facing the future without someone important in your life is a difficult and painful process. No one can fill the aching void the person has left and each day life brings constant reminders of their absence. The future seems uncertain, or even frightening, and a tremendous effort is required to get through every day. It may take many months before the bereaved person is able to dwell less upon the sad events surrounding the death and starts to function more as they did before the loss. 4. To find an enduring connection with the deceased in the midst of embarking on a new life This involves moving forward with your changed life without the physical presence of the dead person, whilst holding onto the memories of them. It is a way of reinvesting in life again alongside the knowledge that the dead person will never be forgotten. This can often feel like a betrayal and is perhaps the most difficult task of all, but it has been recognised that it is important to maintain a relationship or ‘continuing bonds’ with the person who has died, albeit a very different relationship to when the person was alive Klass, Silverman & Nickman 1996. There is a sense of looking to the future, while recalling times spent with the person who has died and finding comfort and pleasure in those memories. It is also a way of making life more meaningful and winning back control, so that the bereaved person is not continually ambushed by memories of the person who has died and trapped by painful feelings, but rather can choose when they want to reflect about their relationship with the dead person. It is normal at anniversaries for feelings of grief to be aroused again and to be as vivid as on the day the death occurred.
Doctors say - Dr Ian Morrison Expand Click below to play video, which will open in a new browser tab.
Review and reflection Expand Returning to the section called 'Focus' above, do you feel differently about any of these situations now? Reflection Did anything in this module surprise you? What is your key learning from this module? Are there any questions you want to follow up either at your place of work or on the training day? Make a note of anything you would like to raise within the training course. Return to menu