There is probably no tragedy in life as scarring as the loss of a child. According to a paper in the International Journal of Palliative Nursing, the impact of losing a child is “pervasive and multidimensional” and takes an “emotional, physical, financial, and spiritual” toll on the caregivers. Having a child diagnosed with a life-threatening illness will leave most parents feeling powerless, depressed, and isolated. However, research has shown that it is necessary to break out of the isolative capsule by practicing open communication. Open communication and reflective listening pave the road toward healing the caretakers who have suffered the tragedy of losing a child1.
Shakespeare reminds us,
“Give sorrow words.
The grief that does not speak
whispers the o’re fraught heart
and bids it break.”
Open communication between family members, the sick child, and the health care team ensures a good death, one in which the personal, religious, spiritual, and cultural values of the family and the ill child are respected. Meaningful discussions, including goals and values, fears about death and dying, prognosis, and options for palliative care, have been shown to facilitate coping with death toward the end of life and during bereavement2,3. Better communication protects against feeling helpless, powerless, and hopeless, and it gives the ill child a sense of control, inner peace, and tranquility, resulting in the improvement of tangible patient outcomes, such as “reducing psychological trauma symptoms, depression, and anxiety [and] shortening ICU length of stay.”4
Danya International recently contributed an editorial piece on the topic of open communication in palliative care. In it, three experts in the field were interviewed: Sarah Friebert, MD, Director of the Haslinger Family Pediatric Palliative Care Center at Akron Children’s Hospital; Mary Ann McCabe, Ph.D., Associate Clinical Professor of Pediatrics, George Washington University School of Medicine; and Lisa Delong, parent and author of Blood Brothers: A Memoir of Faith and Loss While Raising Two Sons with Cancer. After Dr. McCabe and Lisa discussed the importance of open communication in helping the ill child develop a relationship with the caretakers based on trust and the comfort of knowing that there are no topics of discussion that are off boundaries, Lisa gave us insight into how to start open communication with an ill child. She said that taking cues from her son Justin and finding quiet moments for communication are ideal. Lisa and Dr. Friebert then broached the subject of talking to well siblings of the ill child, and both agreed that it is imperative that the siblings are included in discussions about the illness to alleviate any uneasiness or concern related to the disease. Lastly, Dr. McCabe ended by saying that although families may be apprehensive about open communication, thinking that it will upset the ill child, it is in reality the avoidance of these topics that leads the ill child to feel isolated and withdrawn.
It is evident that open and honest communication between family members, the ill child, and the health care team is an indispensable tool to recovering from having a loved one diagnosed with a life-threatening illness or even losing them. Although the emotional anguish brought on by such a tragedy is immense, open communication can provide the buoyance necessary to stay hopeful and positive and to do what is best for the ill child.
Danya has created a suite of resources created to offer guidance and support for communicating about terminal illness and death called Communication Counts. Communication Counts offers three distinct and separate toolkits, tailored to the stage of the illness the child is experiencing: “Supporting Your Child and Family During Diagnosis and Treatment,” “Supporting Your Child and Family While Transitioning to Supportive Care,” and “Supporting Your Family Through Bereavement.” Danya’s training manuals and guides, developed with the help of scientists and an advisory panel of experts, are now available for free download here. Organizations can purchase the resources here. In addition, our full-length resource videos are available for viewing on Danya’s YouTube channel: www.youtube.com/danyatube. We invite you to explore these resources and benefit from them.
Citation
1. Balducci, L. (2012). Death and dying: What the patient wants. Annals of Oncology, 23(3), 56–61.
2. Milberg, A., & Strang, P. (2011). “Protection Against Perceptions of Powerlessness and Helplessness during Palliative Care: The Family Members’ Perspective.” Palliative & Supportive Care, 9(3), 251–62. ProQuest. Web. 1 Aug. 2013.
3. Anderson, W., Kools, S., & Lyndon, A. (2013). Dancing around death: Hospitalist-patient communication about serious illness. Qualitative Health Research, 23(1), 3–13.
4. Levin, T. T., M.B., B.S., Moreno, B., M.A., Silvester, W., M.B., B.S., & Kissane, D. W., M.D. (2010, July-August). End-of-life communication in the intensive care unit. General Hospital Psychiatry, 32(4), 433–442.
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