An estimated 6.3 million children around the world passed away in 2017 (Who.int, 2019). Most often the death of a child happens in the hospital or emergency department. Death can occur after a prolonged illness, such as cancer, or suddenly and unexpectedly, such as after an injury (Consolini, Kimmel, 2019). The death of a child is an event so unimaginable, especially for parents, caregivers and the family overall. Nurses play an important role during this difficult time. As professional caregivers, they are there to provide support for the family and care for the dying child.
During this time the unit of care is the child and the family (Hockenberry, Wilson and Rodgers, n.
d.). The nurse takes on the role of caregiver and maintains the child and family informed, provides emotional support, assists in palliative care and prepares the family for the child’s impending death.
Caring for the child and family begins from the moment the family learns that a child has a terminal illness or irreversible condition.
Families often have difficulty dealing with an ill and dying child, hardly is anyone ever prepared for that kind of news. The family, mostly parents, will go through several stages of grief, starting with denial and eventually gradual acceptance (Hockenberry, Wilson and Rodgers, n.d.). Parents and family should be encouraged to express their feelings while the nurse listens and they must be reminded that the child’s impending death is not their fault. The nurse must learn the child’s understanding and possible reactions to death of children according to the child’s stage of development (Hockenberry, Wilson and Rodgers, n.d.). Cultural, national, and religious differences in beliefs about the after life have also been found to influence a child and family’s understanding of death, the nurse must be aware of the family’s belief in order to provide the good quality care (Hockenberry, Wilson and Rodgers, n.d.).
It is crucial the nurse keeps the child and family informed of every aspect of care for the patient in order to maintain trust and build a therapeutic relationship with them (Hockenberry, Wilson and Rodgers, n.d.). The nurse should be available to answer questions and provide resources for the family in this time of grief. Nurses must always remember to provide patient-centered care and that the child has the right to know of everything that happens involving their care. At times parents request that their child not be told that they are dying, during this time the nurse should inform the parents that the child should be provided with the truth and that often very ill children know they are dying (Hockenberry, Wilson and Rodgers, n.d.). The nurse should inform the family to maintain an open communication with the child, it will facilitate the dying process for both the parents and the child, often when this does not happen the child suffers alone without the parents knowing (Hockenberry, Wilson and Rodgers, n.d.).
Palliative care is provided for children with life-threatening or life-limiting illness. The goal of palliative care is for the prevention and relief of the child’s symptoms. During this process the nurse keeps the family informed of treatment provided, educates about the types of management used and always remains truthful and never gives false hope. Decision making should always involve the child (he or she has the right to be self-governing), the family and the group of medical professionals involved in the child’s care (Hockenberry, Wilson and Rodgers, n.d.). Several children experience pain in their final days as their body systems begin to weaken, nurses can alleviate the fear of pain and suffering by providing interventions aimed at treating the pain and symptoms associated with the terminal process (Hockenberry, Wilson and Rodgers, n.d.). It is important to clearly communicate the intent of any interventions posed, the family must understand the goal of palliative care is to provide comfort during the child’s final stages (Hockenberry, Wilson and Rodgers, n.d.).
The nurse also plays a role in providing emotional, spiritual and religious support, and sibling support. No one can prevent the family from feeling anger, guilt, anxiety, and/or helplessness when caring for a terminal ill child. The nurse is there to assist family deal with all these different emotions and coping mechanisms. A nurse can participate in assessing the family’s spiritual or religious needs, modeling comfort when discussing spiritual matters with the family, facilitating the family’s spiritual or religious rituals, and informing family members of the hospital’s spiritual support group (Hockenberry, Wilson and Rodgers, n.d.). Nurses should encourage parents to spend time with the ill child’s siblings, siblings need for their experiences to be validated as well (Hockenberry, Wilson and Rodgers, n.d.). If old enough, siblings should be encouraged to participate in care of the dying child and be allowed to visit their dying brother or sister.
Nurses have the important role of helping parents identify the physical and emotional changes that signal their child is approaching death. Inform the family that the symptoms a child may show are decreased appetite, increased sleep, oral secretions increase, difficulty swallowing, decrease in urine output and the child is more likely to become less responsive. Symptoms vary between children but these remain among the most common (Hockenberry, Wilson and Rodgers, n.d.). Dying children may also express emotional changes. Often children begin to reassure their parents that they are not afraid and are ready to go. They may experience visions of “angels” or deceased family members. They may also mention that they are not afraid and someone is waiting for them (Hockenberry, Wilson and Rodgers, n.d.). Parents should be encouraged to continue talking to the child calmly and quietly as loss of hearing is the last sense to fail. The nurse should be prepared to provide physical support, like frequent oral care and repositioning, along with emotional support.
At the time of death the family normally gathers around the child. When the child is pronounced dead, there may be a variety of emotions by family members, in rare instances of burst of anger by family members the nurse should be prepared to respond by assuring the appropriate resources are readily available so the situation does not escalate. The family should be provided with the opportunity to say their last goodbyes. At this time the nurse also provides a quiet space and privacy, once this is done generally all that is necessary is supportive presence (Hockenberry, Wilson and Rodgers, n.d.). When the parents are ready the nurse offers to bathe the body, and parents are allowed to participate if they wish to do so. The final separations of the child’s body from the parents and the family is often the most emotional and traumatic time. The nurse should offer support to the parents and ensure that other family members or friends are available in the coming hours to provide support (Hockenberry, Wilson and Rodgers, n.d.).
The death of their child is the most devastating thing parents can through. Not only did they lose their child but it also means they have to give up their hopes and dreams for that child (Hockenberry, Wilson and Rodgers, n.d.). Inform the family that it is ok to mourn, and be prepared for their feelings of shock, disbelief and despair. All family members mourn the loss of the child, and their needs mist be recognized to facilitate their grief process. It is crucial that the family’s support system remains available while the family mourns. The nurse should follow up with the family and ensure the proper resources are provided to them to help them get through grief.
In conclusion, working with a dying child and the family can become overwhelming for the nurse. One may feel stress, compassion fatigue, anger and depression and even go through the grieving process. The nurse should recognize her or his own feelings and emotions. Respite care should be provided between medical staff as well (Hockenberry, Wilson and Rodgers, n.d.). Nurses should be aware of available resources to them and find ways to cope with stress and feelings of guilt. It is crucial that the nurse recognizes her/his own ethical concerns and focuses care on the child and their families and be respectful of their beliefs and decisions. The nurse should have the competent skills to care for dying children. He or she must recognize their own feelings of the situation and be ready to provide empathetic. Pediatric nurses behold one of the most important tasks in the world, and that is providing care of a dying child and their families, and reminding them they are not alone in this time sadness.