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Silence Is Not Golden: Communicating With Children Dying From Cancer

From The University of Texas M.D. Anderson Cancer Center, Houston, TX

Address reprint requests to Walter F. Baile, MD, Section of Psychiatry, The University of Texas M.D. Anderson Cancer Center, Unit 431, PO Box 301402, Houston, TX 77230-1402; e-mail: wbaile{at}mdanderson.org

CASE HISTORY: PART 1

Oscar, a 9-year-old boy, was first diagnosed and treated for medulloblastoma at the age of 1 year. Eight years later, all anticancer treatment options for him had been exhausted. Although Oscar knew that he was dying, his parents could not accept the inevitable. Oscar’s parents would not allow anyone else to discuss the end of his life with him either. He reacted by becoming despondent and withdrawn and sometimes very obstinate. He stopped eating, was hyperalert much of the time, and for the most part, would not talk.

INTRODUCTION

Cancer is the most common cause of nontraumatic death in children, resulting in 2,200 deaths out of a total of 30,000 pediatric deaths annually. Approximately 25% of children diagnosed with cancer will die of their disease or its complications.¹ Issues surrounding how best to communicate with children who are dying of cancer are seminal because providing information and actively addressing their concerns can enhance the cooperation of the child, reduce anxiety, and lighten the burden of secrecy, things that create tension in families at the end of a child’s life. Oscar’s case highlights the understanding and concerns that children with terminal prognoses often have regarding the fatal nature of their illness, whether they express these concerns directly or indirectly.

WHY IS IT IMPORTANT TO DISCUSS DYING WITH CHILDREN?

In seriously ill adults or children, uncertainties about the future often provoke a profound sense of loss of control. Studies show that children wish to be informed about their illness and plans for treatment.¹ Although children’s information needs may be age-dependent, most will worry about the impact of the disease and medical treatments on their daily lives and on others around them. Studies also show that when information, even if unfavorable, is withheld from children, such silence exacerbates the child’s fears and fantasies.² While not all terminally ill children want to talk specifically about death or the dying process, when they realize that their future is limited, they adapt by shifting their focus to a more immediate future, such as the next holiday or a significant event.³ Some also have a surprising awareness of the fact that they are going to die. In our practice, children have asked questions such as, "is it going to hurt?" "Will I be able to breathe?" "Will an angel come and take me away?" Sometimes children, as in Oscar’s case, will act out their concerns with disruptive behaviors. When communication barriers are addressed, these disruptive behaviors often disappear, as demonstrated by the resolution of Oscar’s case.

CASE HISTORY: PART 2

Oscar’s parents were quite disturbed by his depression and withdrawal. A child psychiatrist was called in as a consultant and interviewed them and Oscar. She helped them understand that Oscar’s symptoms were an expression of thoughts and feelings that were troubling him. Recognizing that trying to protect Oscar was counterproductive, they agreed to a family meeting in which Oscar was able to express his fears and anxieties about dying alone. The ability of his parents to reassure him allowed Oscar to become more engaged in living. He took up decorating pencils in occupational therapy and selling them to family members and visitors of other patients.

WHAT ARE THE BARRIERS TO DISCUSSING END-OF-LIFE ISSUES WITH CHILDREN?

Most pediatric oncology training programs offer little instruction in how to approach end-of-life communication with dying children and the parents of such children.⁴ We have observed that even those experienced in caring for dying children struggle to find a way to initiate these discussions. Additionally, the oncologist must also deal with the emotions of parents who often selectively pass on only information they regard as hopeful or information that reinforces their own ideas.⁵ Their reluctance to be honest usually represents their own grief and struggle to accept their child’s death, and it can have significant consequences. The case of Marco, a 14-year-old boy with osteosarcoma, illustrates this point. Initially, he was quite open and communicative about the seriousness of his illness. As he entered the terminal phase of his illness, he perceived the unwillingness of his parents to face the fact of his dying and he became withdrawn and slept most of the time. The impending death of a child may also engender powerful emotions in the professional caregiver, such as feelings of having failed the child, a sense of personal helplessness, sadness for a life unfulfilled, and anticipatory grief.⁵ These feelings need to be acknowledged and explored; avoidance or attempts to block them out or only partially address them, can lead to caregivers becoming detached from the child.

Several myths about communicating end-of-life information to children constitute additional barriers. These include the mistaken belief that talking about death and dying will send the child into a deep depression and that children are not able to understand concepts of death. Such attempts to protect them, however, actually place barriers between them and the people who can best help them understand and deal with their experience, as children, are even more anxious and can feel a greater sense of isolation when they are shielded from the truth.

WHAT DO CHILDREN UNDERSTAND ABOUT THE CONCEPT OF DEATH?

According to classical developmental theory, children do not fully comprehend the irreversibility of death until approximately ages 11 to 16 years.⁶ However, even much younger children understand the principle of cause and effect, and most children with fatal illnesses, even those as young as 3 and 4 years, pick up cues from the physiological changes in their bodies and the reactions of parents and hospital staff and thus can have an advanced understanding of disease and the concept of death.⁵ Dying children are commonly aware of the brevity of the time they have left, especially adolescents who are acutely focused on the future. Thus, approaching the child with a preconceived notion of what a "typical child" of that age is able to understand about death is not always helpful in a clinical setting.⁷

WHEN SHOULD WE DISCUSS THE TERMINAL NATURE OF ILLNESS WITH CHILDREN?

Many professionals working in the field believe that children should be given honest and accurate information about their illnesses and explanations of specific treatments and medications. As outlined recently,⁸ sharing information with a child at the beginning of the illness, especially when the illness is a serious one, will establish trust in the child that he or she will be told the truth during the course of the illness. Once the child recovers from the shock of the initial diagnosis, he or she can usually focus on the improvement promised by the treatment plan. As a child becomes increasingly ill, events may trigger concern and fear. The death of a friend on the pediatric unit or in the clinic may exacerbate the fears and doubts experienced early in the diagnosis. Dying children often signal their awareness and distress indirectly. Signs that younger children may want to discuss end-of-life issues include expressing the fear that something will happen to the parent or those working closely with them, separation anxiety, and generalized anxiety.⁹ Older children may signal their concerns with behavioral manifestations such as school phobias, regression into a fetal position, or expressing fears about the potential for treatment failures.¹⁰ Preadolescents often express their anguish through imagery in drawings. Their behavioral manifestations include tearfulness, agitation, lethargy, outbursts of anger and hostility, and refusal to eat or cooperate with treatments. Adolescents may manifest the need to discuss end-of-life issues by expressions of rage, concerns about sexuality and appearance, and a heightened awareness of time. The end point of the terminal phase is often marked by a turning inward on the part of the child, or decathexis.¹⁰

WHO SHOULD COMMUNICATE WITH CHILDREN ABOUT END-OF-LIFE ISSUES?

Caregivers, whether oncologists, palliative care specialists, psycho-oncologists, child psychiatrists, oncology or pediatric nurses, physicians’ assistants, a team of professionals, or parents, should be sensitive to and can learn how to minister to the fears of terminally ill children. One way to accomplish a basis for such empathy is to demonstrate the willingness to witness and accept whatever they say or otherwise express. An important caveat in discussing end-of-life issues with children is that the caregiver should already have a rapport and trusting relationship with the child.

HOW SHOULD WE DISCUSS A TERMINAL ILLNESS WITH CHILDREN?

Existing guidelines for discussing end-of-life issues suggest that it is useful to formulate specific skills to be embodied in discussions that often begin long before the child is terminally ill.⁵ The following "6 Es" strategy can be used as a guide for communicating with dying children and their family members.

Establish an agreement with parents, children, and caregivers early on in the relationship with them concerning open communication. Begin by exploring the attitudes of the child’s caregivers about sharing medical information with the child and answering any concerns they might have. Providing a clear explanation about the benefit of information disclosure can balance the natural tendency to be protective of the child. At the onset it is also important to acknowledge the uncomfortable feelings that one may experience when dealing with dying children and the potential of these feelings to thwart open communication.

Engage the child at the opportune time. A newly diagnosed serious illness, or the occasion when a child takes a turn for the worse, are medical events that should trigger discussion. Actively attending to signs of significant behavior change that suggest that the child is struggling with emotions will provide an opening for discussing the illness.

Explore what the child already knows and wants to know about the illness. It is often surprising how much information the child already has and the extent of his or her fantasies and concerns. Exploring this will allow you to correct misperceptions and misunderstandings about the medical facts and to give information according to the child’s desire for information.

Explain medical information according to the child’s needs and age. Children often have many questions about what is happening and what is going to happen to them. Children may want some specific information, but not all. Asking "What would you like to know?" "What have you been worrying about?" will allow you to specifically answer specific information needs.

Empathize with the child’s emotional reactions. Allowing a child to be upset and express feelings while providing physical comfort may be painful for the caregivers. Nonetheless, once emotions are vented, discussion of more concrete concerns often follows. A strategy for addressing a child’s emotions includes: empathizing ("I can see that you’ve really been worried about this"), validating ("we’ve been wondering why you’ve been upset") and clarifying ("can you tell me what you’ve been thinking?").

Encourage the child by reassuring him or her that you will be there to listen and to be supportive. Isolation and anxiety about his or her support system and about symptoms such as pain are prime concerns for children who are dying. Acknowledging the fact that cure is not possible but that life’s tasks can continue, even if only in a limited way, provides some stability to the family and is perceived as a hopeful attitude. False reassurance such as saying "everything will be alright" is usually not helpful.

CONCLUSION

Uncertainty is a major psychological burden both for children and adults with serious illnesses because they are limited in their capacity to obtain information that could potentially reassure them. Thus it is incumbent on those caring for children who are seriously ill to frequently assess their concerns. Caregivers of dying children must often acknowledge their own emotional pain so it does not become an obstacle to open communication. Avoiding discussion of dying for fear of depressing or frightening a child is a counterproductive strategy, which is not born out by data. Oscar’s acceptance of the seriousness of his illness, and his ability to nonetheless live in the present, underscore the beneficial effect of addressing a dying child’s concerns.

Authors' Disclosures of Potential Conflicts of Interest

The authors indicated no potential conflicts of interest.

NOTES

Submitted November 3, 2004; accepted March 22, 2005.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

REFERENCES

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3. Bluebond-Langner M: Meanings of death to children, in Feifel H (ed): New Meanings of Death. New York, NY, McGraw-Hill, 1977 , pp 47 -66

4. Papadatou D: Training health professionals in caring for dying children and grieving families. Death Studies 21 : 575 -600, 1997[CrossRef][Medline]

5. Sahler OJ, Frager G, Levetown M, et al: Medical education about end-of-life care in the pediatric setting: Principles, challenges, and opportunities. Pediatrics 105 : 575 -584, 2000[Abstract/Free Full Text]

6. Piaget J: The child's conception of the world. London, UK, Routledge & Kegan Paul, 1929

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