Focus Expand When a baby or child is dying, your medical skills, experience and caring attitude are stretched to the full. Sometimes nothing more can be done to prevent the death. That’s when another part of your role begins… The way you communicate with parents when their baby or child is not expected to live can make a significant difference. In this situation, the family is bound to be deeply distressed. Whatever you say or do cannot take away their distress, but you can make a difference by your humanity, your sensitivity, your language and your actions – and this will be remembered forever. Think through the following three scenarios and how you might respond: 1. A child under your care suddenly collapses and is not expected to live. The parents arrive at the hospital in the midst of the crisis of resuscitation and want to see their child. You feel they are so distressed that it would be difficult for all involved to have them there. You and the nurses are deeply distressed by the situation, and you wish to protect the parents from similar feelings. Do you… a) Tell them that, in your professional opinion, it would be too distressing for them to be in the resuscitation room, and that you would not permit it. b) Tell a nurse to persuade them that it’s in their best interests not to see the child – it would only make a bad situation harder to manage. c) Ask a nurse to explain what is likely to be happening, and to offer the parents support to come into the resuscitation room with you and see their child anyway. 2. In the same situation, you are with the parents as they face a decision as to whether or not treatment should be continued. Clearly, you are responsible for explaining the situation to the parents. Do you… a) Listen to their concerns, answer their questions and work towards a joint decision. b) Explain to them that the decision is theirs. Tell them what you believe is best. Allow them to ask questions, and give them clear, considered answers. c) Remove the burden of the decision from the parents by giving them your considered medical opinion and telling them what course of action is best for their child. 3. When dealing with both parents at the same time, is it more appropriate to… a) Give the information to the father who is likely to be less emotional and better placed to support the child’s mother. b) Explain the information to both the mother and father and ask them what they understand. c) Give brief information equally to both parents and leave a member of the nursing staff to support them.
Parents say - Matt and Joanna Expand Click below to play video, which will open in a new browser tab.
Presentation Expand Make every effort for parents to be with their child, if they wish. Respect the feelings of parents who cannot face the situation and wish to leave. They may have many conflicting emotions. Don’t “protect” them from this opportunity. Help parents to parent. They may be afraid to get involved and need your help with information. They may not have thought about the value of including brothers and sisters. Best practice documents highlight the importance of offering parents choices (see Summary and further reading section). Treat parents equally in giving information. Both parents need information and support. Prepare parents and siblings for what they will see, explaining about the machines and other equipment and avoiding complicated terminology… without talking down to them. Explain what you mean if you use words that are unfamiliar in everyday conversation. Asking parents what they have understood is an important way of checking their awareness of the situation. Help parents to participate in the decision to withdraw treatment, but don’t expect them to make the decision on their own. They will need time to think about what has been said. Parents appreciate knowing what the choices are and that a child may be taken home to die. Explain carefully the arrangements for pain relief, comfort feeds, hydration and facial oxygen, if appropriate. Key points Allow parents to be with their baby or child if they choose Help include brothers and sisters, if the parents wish Treat parents equally Explain machines, tubes, needles etc. Involve parents in decision to withdraw treatment Offer them a private room/space Give parents the choice of being present for the removal of life-saving equipment. Offer the family the use of a private space in the hours leading up to a change from intensive to palliative care. Some units have dedicated rooms, but you may have to make the best of less-than-suitable space. Privacy is the primary priority. If parents want to be present during removal of life-saving equipment, enable them to see what you are doing and to participate if they want to. Any involvement will reinforce the reality of what is happening. It is evidenced that parents need to internalise the reality as an important part of their grieving process. (Worden 2009)
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