Debra Newborg, Psy.D.
Licensed Psychologist
Concord, MA
Despite the advances in treatment and survival rates for pediatric oncology, children, unfortunately, continue to die from their disease. It is these children who provided the motivation for conducting my study in 2007. This article aims to provide a brief summary of my doctoral research. While 2007 may seem long ago in the world of research, it also does not seem so far away when we consider that there have been very few additional studies conducted for this specific body of work in the recent past. Furthermore, the topic and the results continue to seem relevant for those working in the field of pediatric oncology and for children and families navigating a terminal diagnosis. Perhaps this overview can provide a reminder of how important it is to support our staff and provide ongoing education in this area to enhance our care for children and families managing these circumstances. I found the results of my research to be interesting and worthwhile sharing in that it highlighted how difficult it is to implement and encourage open communication with children who are dying and their families, despite well meaning, knowledgeable and highly educated professionals working in this field.
Researchers and professionals as early as the 1960’s, 1970’s and 1980’s have been motivated to explore what occurs psychologically for this unique population of children (Vernick & Karon, 1965; Waechter, 1971; Bluebond-Langer, 1978; Spinetta & Maloney, 1978; Koocher & O’Malley, 1981; Sourkes, 1995). Spinetta (1980) reported that children who are dying most often are aware they are dying and often experience feelings of anxiety that decrease when provided opportunities to communicate about their thoughts, feelings and experiences. These researchers recognized that while previously there was more of a protective approach to shield children from diagnosis and end-of-life prognosis, they found that children are indeed aware that they are dying and that openly communicating with these children was a necessary component of palliative care. Oppenheim (2004) noted that children as young as five years of age desire sharing their thoughts and feelings about death and dying and benefit psychologically from doing so.
Open communication with children who are dying is not simply “information-dispensing” or giving children facts about their illness without understanding what it is they want to know (Bartholome, 1993), and it is not intended to bombard children with a truth they are not prepared to hear (Judd, 1995). It is about following the child’s pace and listening to what the child is saying and what her concerns, fears and worries may be (Bartholome, 1993).
An “atmosphere of open communication” (Sourkes, 1995; Wolfe et al., 2004) has been described in the literature and is intended to provide children with the opportunity to express themselves over a prolonged period of time without the fear of hurting another, while also helping children feel as though they will receive an honest answer when questions are asked (Vernick & Karon, 1965). Open communication with children who are dying is not intended to be a one-time verbal conversation but expression of thoughts and feelings over time utilizing different media. It was this concept, along with my own observations and anecdotal accounts, that really shaped my interest in wanting to understand more about what was happening in the field with regard to open communication with this population and where the responsibility landed when it was time to create this type of environment.
Sourkes (1995) stated, “If an open climate of communication has been established from the beginning of the illness, it will be reflected in how the child talks about death” (p. 157). In addition, if an open atmosphere for discussion has not been developed then the child may not feel comfortable expressing herself (Sourkes, 1995). Providing truthful and developmentally appropriate answers is an important component of creating an atmosphere of open communication. If this does not take place, then a cycle of dishonesty can continue and children and families do not benefit. It is important to note that just because a child is not speaking about death and potential related anxieties, does not mean that she is not thinking about death and feeling anxious (Sourkes, 1995).
Wolfe et al. (2004) concurred with this earlier research that end-of-life care should include an atmosphere of open communication such that emotional and psychological coping are enhanced and feelings of isolation, fears and anxieties are decreased. Creating this environment of open communication is not intended to take hope away from families and children, but rather so that children do not have to bear the burden of death alone. It is possible to hold hope for a cure, hope for decreased pain and suffering, while also preparing children for the possibility of death. It is during this process that children can continue to be children, be heard, validated, respected, and loved, especially while they are dying.
The purpose of this study was to determine what was occurring in practice with regard to open communication with children who are dying from cancer. Although the previous research stated that children are aware they are dying and that there are benefits to openly communicating about this, the question still remained about whether or not parents and professionals in the field believed this to be true and were engaged in facilitating the conversations. It was thought that understanding this to a greater degree could help inform and support professionals in order to help parents communicate openly with their child to facilitate coping and alleviate psychological distress.
Open communication for the purposes of this study, was defined as verbal and/or non-verbal free expression of positive and negative thoughts and feelings about death, dying, and other illness experiences, which could include children’s fears, questions and concerns related to illness, treatment, and prognosis as well as death and dying. This definition also drew upon components of Spinetta and Maloney’s (1978) definition of open communication.
The study focused on children between the ages of 6 and 12 years of age who were dying from cancer. Participants were asked to exclude children with brain tumors due to the unique neurological needs and varying rates of disease progression for this population. Due to the limitations of speaking with children and families directly for a number of reasons, this study aimed to understand professionals’ attitudes, practices and observations as a means of capturing what was occurring in the field.
A questionnaire was developed consisting of 24 items (22 quantitative and 2 open-ended qualitative questions) and a demographic form, in order to capture professionals’ attitudes, practices, and observations, along with perceived benefits and risks of open communication. A majority of these were completed through Survey Monkey with 4 being completed by paper and pencil. Participation was anonymous. Participants were professionals working in the field of pediatric oncology for at least one year and had direct clinical contact with families whose child died or was currently dying of cancer. A total of 162 participants completed the entirety of the questionnaire. Data was also utilized for those participants with partial completion of the questionnaire: attitude measure (N=180), practices measure (N=176) and observation measure (N=174). A majority of participants identified themselves as mental health professionals, followed by nurses and then physicians.
It was hypothesized that, despite what earlier research had suggested regarding the benefits of open communication with children who are dying of cancer, that this was not occurring in practice for reasons such as parents and professionals not believing that children are aware they are dying, believing that children do not benefit from being told the truth about their prognosis, believing that open communication is not beneficial and indeed can be harmful, and/or that it is too emotionally difficult for the parents and professionals involved to encourage the process.
The results of the study were striking, in my opinion, for a number of reasons. Primarily because of the contradictions in responses that highlighted just how complicated this process can be, even when previous data suggests it should be fairly straightforward. While there were overarching agreements and themes, many of the apparent contradictions were gleaned from the subtle nuances within the quantitative responses and the open-ended responses, which when examined also highlighted some striking paradoxes.
Despite the hypothesis that open communication is not occurring in practice today, results suggested otherwise initially, indicating that professionals do think children have an awareness they are dying, that truth telling is best practice particularly when the child is asking, and that open communication is beneficial, with the benefits outweighing the risks. Having said this, there are challenges to doing this that include the uniqueness of each child and family, the inherent emotional intensity of the situation, lack of agreement with parents, and professionals believing they are lacking the skills and training to accomplish this task well. In addition, professionals continue to maintain the belief and more importantly the fear, that they will make things worse as opposed to alleviate suffering. Professionals also believe that parents play a large role in open communication with their child and believe them to be responsible, in general, for encouraging their child’s emotional expression and creating an atmosphere where the child can feel comfortable expressing herself. Despite the strong endorsement for open communication with children in pediatric end-stage cancer, professionals observed this occurring between parents and children only sometimes and find open communication with children who are dying to be a most challenging task. So, while the overall picture of the data suggests that open communication is occurring in practice today, closer examination shows that this may be occurring only some of the time.
While professionals overall are proponents of open communication with children who are dying, they also could not deny the emotional intensity involved with the death of a child and the emotional toll that end-of-life care has on medical professionals and parents. Throughout the quantitative and qualitative accounts in the study, professionals stated repeatedly that the emotional difficulty of the situation is one of the greatest challenges and obstacles to open communication. Emotions such as sadness, anger, anxiety, and fear were identified as emotions that prevent professionals from carrying out best practices that they have identified as important. In some cases, professionals indicated that they feel the situation is already difficult enough and do not want to make it any more challenging for parents. Professionals also indicated that they are afraid of their own emotional reactions and therefore may avoid open communication for this reason as well.
Furthermore, professionals not only find the emotional intensity of open communication with children who are dying to be challenging but also maintain the fear that they will increase feelings of anxiety and depression in the child when there is communication about prognosis and death despite previous research stating otherwise (Waechter, 1985; Lonetto, 1980). This finding proved interesting because while professionals repeatedly stated on the qualitative portion of the questionnaire that one of the biggest risks of open communication is increasing feelings of anxiety and depression, they also reported that the greatest benefit of open communication is decreasing feelings of anxiety and allaying fears. This paradox was one of the most striking findings in the study.
Another notable finding was the idea that open communication about death and dying with children and families would “take away hope.” Professionals reported the fear that they would change the outcome of the disease and even feared making the child die sooner. One response, while perhaps extreme, stated, “…some children may give up and death may come quicker than it was expected to if they know too soon.” While most professionals did not state that taking away hope actually leads to a sooner death, it seems possible that this is the underlying thinking when such statements are made.
The third striking finding was that professionals are undecided about how to proceed when parents do not wish to communicate with their child. Mental health professionals identified most often that a key obstacle to open communication is lack of agreement with parents. The qualitative data suggested that one of the greatest risks to open communication is fear of increasing parental distress. While professionals stated that parents think their child is aware of prognosis and seek help with communication, professionals also stated that they observe parents communicating only intermittently. Not only did professionals report that they felt it a risk to increase the child’s emotions of anxiety and depression, but that they were also concerned about increasing parental distress as well. While professionals may believe that open communication is beneficial to the child, they do not always believe that the parents can handle it or will be responsive to the suggestion. There is a qualitative concern about making an already painful situation worse for parents.
Additionally, and potentially somewhat concerning, because professionals place a large amount of responsibility on parents, when open communication is not occurring, professionals, perhaps, assume that the parent knows best. This information supports the conclusion that open communication occurs more frequently when professionals and parents are in agreement. Professionals are of the mind that if parents do not wish to talk to their children then they should not be encouraged to do so. The frequency in which open communication occurs, however, decreases when parents and professionals are in disagreement. This is unfortunate as it is these children who need a professional advocate on their side. While parental wishes, of course, have to be taken into consideration, helping professionals provide this guidance to parents when necessary is a potential must.
Lastly, an interesting discovery of this present study and one that highlights the nuances of the findings along with the potential need for additional support for professionals, was the finding that there seems to be a parallel process of “protection” and silence that occurs between professionals and parents and between parents and their children. Currently, as well as in the past, parents, it seems, continue to wait until their child verbally expresses the desire to communicate about death and dying or ask to know more information about her illness. When parents do not get the verbal reinforcement they need from their child, which indicates she is struggling emotionally, they may think that their child does not have concerns or questions about prognosis. They are waiting for their child to express her need to communicate or ask questions. This is problematic as children are thoughtful and often feel a sense of protection over the ones they love, particularly their parents. Children frequently feel the need to protect their parents from their own pain, which was seen in the present study as well as in previous research (Vernick & Karon, 1965). This leaves children to manage thoughts and feelings on their own when they have taken the signal from their parents to not communicate openly about their fears, anxieties and concerns. If parents can be educated about such things, then perhaps children will be less likely to die feeling isolated and alone.
Interestingly, professionals in this study are waiting for the same thing to occur with parents. As was noted in the qualitative account, professionals are waiting for parents to initiate their desire to discuss the topic of their child’s death or are waiting for the “other” to initiate conversation. Professionals are waiting for parents to ask them what to do about open communication with their child. When parents do not ask, professionals are either assuming that it is occurring or that the parents wish not to communicate with their child or that they do not need support around this. Therefore, parents are potentially left to struggle on their own while professionals assume that they are doing okay or do not wish to have additional guidance. Professionals feel as though they are protecting the parents while the parents feel as though they are protecting their children. A cycle of protection or silence is occurring between all involved. This “protective approach” has been demonstrated in the past to not serve children well and most likely is not serving parents well either.
Some additional findings worth noting are those themes identified for the two open ended questions that were asked regarding perceived risks and benefits of open communication. The major themes identified for perceived risks in order of frequency and saliency were as follows: increased parental distress, increased distress for the child, taking away hope, professionals’ lack of skill and training, misunderstanding families’ needs and misinterpretation of the child’s needs. The major themes identified for perceived benefits of open communication were, also in order of frequency and saliency: emotional benefit, fulfillment of wishes, enhancement of family bonding, partaking in making plans, enhancing child’s overall coping, and enhancing parents’ coping. The contradictions and uncertainty can be seen even in these seemingly opposing questions.
Given the nature of brevity for this piece, all findings and information regarding analysis, demographics, limitations of the study and cross cultural implications are not described in detail here (for inquiries into a more in depth look at the research please reach out to drdebranewborg@gmail.com). Despite this inability to cover all of the areas discussed in this doctoral research, it would be remiss to not mention that this study and the concept of open communication with children is a Western concept. Working with children and families from a variety of cultures and those not rooted in Western concepts should be handled with additional care and may involve a different approach that is sensitive to an individual family’s cultural beliefs and needs.
Repeatedly throughout this study, the need for additional training was addressed. Professionals reported a perceived lack of skill and training in the area of communicating with children who are dying, which indicates a need for more training in order to develop their skills in working with terminally ill children. This was cited more often by nurses and physicians, however, several mental health professionals also stated that they lack the skills and training to promote open communication between parents and children who are dying.
Perhaps training could focus, or highlight more specifically, what occurs for children emotionally when they engage in communications about death and dying and what occurs for them when they do not. Additionally, there is a need for education for providers about the cognitive development that occurs over time in the way a child understands the concept of death (i.e., the irreversibility, non-functionality, and universality). Professionals need reassurance that they will not harm children emotionally through the act of open and honest communication when this is carried out with compassion and care. Parents and professionals may also benefit from an increased understanding of how children communicate through art and play and not only through verbal means. Furthermore, learning how to broach a topic and start a conversation with children could also be helpful, in addition to understanding how to listen for whether children want to hear more information about their diagnosis and prognosis. An operational definition of “atmosphere of open communication” could be warranted.
In conclusion, open communication with children who are dying of cancer is a necessary and important component of palliative care. While keeping a child physically comfortable and free from pain throughout treatment and end-stage disease is necessary, the psychological care of the child is, of course, of great importance.
Children most often possess more knowledge about many things than the adults around them tend to believe. Children are able to sense when things are different either by noticing their parents’ changes in emotions and behavior, or by their own intuition and understanding of their bodies (Judd, 1995; Spinetta, 1980). We know this to be true in many areas in children’s and their families’ lives. It would lead us to believe that it would not be different in these challenging experiences as well. Children also, while impressionable, are not fragile. Children manage information well and can tolerate discussions about their own health and the events happening around them, even death. Children have feelings about many different things that they desire to communicate when given the chance.
The ever present struggle of balancing hope with truth and honesty seems to remain, along with how to share knowledge in these delicate situations. Training professionals, as well as parents, in the area of open communication is particularly important and will ultimately support children throughout the dying process. Designing useful and effective interventions and resources will assist professionals, parents and children who are dying. Information about the benefits of open communication will provide parents and professionals with the advantage of understanding that when given the opportunity to communicate, children and families are brought closer together, not further apart. Children are provided with the opportunity to fulfill wishes, share their thoughts and feelings and say goodbye. Parents and children engage in important moments together during a time when it is particularly significant to share this emotional bond. This will not only benefit the child who is dying but will remain with the parents long after the child has died.
References
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