Megan Watts and Debra Mills, Nursing
Introduction
The death of a child is experienced with great resistance because it is understood as an interruption in the life cycle—often seen as untimely and unfair. Pediatric nurses care for children in high-mortality environments, such as the pediatric intensive care and oncology units and, as a result, are directly affected by childhood death (Papadatou, 2000). Caring for a dying child and their family is an emotionally charged situation (American Academy of Pediatrics, 2000; Catlin and Carter, 2001; Stutts and Schloemann, 2002). Nurses spend much time caring for their patients but forget to look after themselves. Caring for the nurse is an often-forgotten component of nursing that can affect quality of care.
Exploring the nurse’s experience in caring for a dying child will help to identify effective coping strategies. It has been suggested that effective coping strategies are crucial in prevention of burnout and damage to overall emotional health (Hinds, Oakes, Hicks, & Anghelescu, 2005). The findings of this project will provide an opportunity to create a broad picture of how nurses cope and behave when caring for a dying child.
Methodology
A search of the literature was performed in the following databases: CINAHL, the Cochrane Library, EBSCO, MEDLINE, and PubMed. The subject terms and keywords used included: dying OR terminal OR end of life; pediatric OR child* OR infant; nurs*; and coping OR stress OR adaptation OR psychological. An initial search of the literature resulted in 168 potential articles. Articles were included if they reported on primary research studies related to nurses’ experiences and coping strategies with the care of dying pediatric patients. Articles were excluded if they concerned nurses’ experiences in populations over 18 years of age. Articles concerning neonatal deaths were also excluded. After a broad overview of the initial search results, it was determined that 35 of the 168 articles were appropriate for inclusion in the literature review. Each article was read in its entirety and summarized. The summaries were then synthesized to create the systematic literature review.
Results
An analysis of the literature revealed two themes in which pediatric nurses experience when caring for a dying child: “moral and ethical distress” and “personal pain and suffering”. A broad majority of the articles emphasize a moral and ethical distress with feelings of “helplessness”, “powerlessness”, and “impotence”—whether it was not being able to help the dying child or the grieving family. Interestingly, a lack of knowledge and skill was found to be an important factor in multiplying this distress. Nurses often stated a need, from a moral and ethical standpoint, to help the family cope. The research suggests that doing so may be therapeutic to the nurse. But, a lack of knowledge and communication skills tends to force nurses to use less than optimal coping strategies. As a result, nurses tended to withdraw from the family after a death because they felt helpless, frightened, or guilty. The research revealed an overarching lack of preparedness for communicating with family and dealing with the death of a child. A common statement in all of the articles was, “I do not feel prepared.” Nurses inadequately equipped with communication skills resort to not only withdrawal from the family but also feelings of coldness and indifference. This is the nurse’s attempt to protect oneself—as a result of past damages from becoming emotionally attached to the family and patient. Another overarching finding was the high level of dissatisfaction that pediatric nurses had with the support provided after a patient death.
Personal pain and suffering was another common theme associated with nurses’ experiences in caring for a dying child. The common coping strategy as a result was to protect self by keeping busy and, again, minimizing interactions with the family. Overall, as a result of personal pain and suffering and moral and ethical distress, nurses commonly avoid recognizing the distress they may be experiencing, avoid communicating and becoming attached with the family or patient.
Although many nurses resorted to withdrawal and avoidance, the most common and beneficial coping strategy that nurses were found to rely on was sharing their experiences with colleagues. The benefit of this coping strategy stems from the nurse’s desire for ‘meaningmaking’— making sense of and identifying benefit in the experiences. Meaning-making was identified as the most effective strategy for dealing with grief.
Discussion
After a thorough analysis and synthesis of the literature on how nurses cope and behave while caring for a dying child, it is most evident that nurses are not adequately equipped with the skills and knowledge needed to grieve effectively. Learning to recognize and deal with grief is a skill for nurses that is crucial yet underemphasized. Nurses that do not properly deal with their grief are affected personally and professionally—unable to provide the adequate care needed by the patient and the family. It is clear that further research is needed to develop and implement grief support programs for the pediatric nurse that are effective.
From the literature, based upon the nurse’s desire for meaning-making, peer-supported storytelling and bereavement debriefing are two effective interventions that can be implemented in hospital units. These should not be stand-alone treatments, but rather a component of a larger stress-management program. Further research is needed to evaluate the most effective program to increase effective coping.
Overall, nurses need to be better prepared. The preparation of pediatric nurses in death situations has been overlooked and possibly neglected. Just as it is the nurse’s mission to protect, promote, and maintain the health of the patient, it must also be a concern to do the same for the nurse. Changes need to occur not only in hospitals but also in schools. Nursing schools need to provide students with a foundation on end-of-life care and provide death simulation experiences while in the education setting. It is critical to provide students the opportunity to be exposed to pediatric death, to talk openly about the subject, and evaluate and implement effective coping strategies. Providing a foundation on end-of-life care for the nursing student will better equip the nurse to face such conflicts in his or her professional career.
Conclusion
A systematic review of the literature on how nurses cope and behave while caring for a dying child suggests that programs and education are needed. Nurses experience personal pain and suffering themselves, as well as moral and ethical distress. A lack of knowledge and communication skills causes nurses to resort to ineffective coping skills such as withdrawal and indifference. Nurses’ unmet needs not only increases risk of burnout and turnover rates but also affects the care they give. While the patient is a nurse’s priority, it must also be a priority to care for the nurse. It is evident from the literature that there is a need for pediatric nurses to make meaning of patient deaths. Interventions such as peer-supported storytelling and bereavement debriefing are two components of a program that must be implemented in all hospital units. Furthermore, there is a need for a change in undergraduate nursing schools so that nurses can later deal with life and death in hospitals appropriately.
References
American Academy of Pediatrics, (2000). Palliative care for children. Pediatrics, 106(2), 351-357.
Anderson, K., & Gaugler, J. (2006). The grief experiences of certified nursing assistance: personal growth and complicated grief. The Journal of Death and Dying, 54(4), 301-318.
Caitlin, A., & Carter, B. (2002). State of the art: creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 22(3), 184-195.
Hinds, P.S., Oakes, L. L., Hicks, J., & Anghelescu, D. L. (2005). End-of-life care for children and adolescents. Seminars in Oncology Nursing, 21, 53-62.
Papadatou, D. (2000). A proposed model of health professionals’ grieving process. The Journal of Death and Dying, 41, 59-77.
Stutts, A., & Schloemann, J. (2002). Life-sustaining support: ethical, cultural, and spiritual conflicts. Part I: family support: a neonatal case study. Neonatal Network, 21(3), 23-29.