Child Relationships - Clinical Tree

The tide recedes, but leaves behind bright seashells in the sand. The sun goes down, but gentle warmth still lingers in the land. The music stops, and yet echoes on in sweet refrains. For every joy that passes, something beautiful remains. — Unknown

The Relationship with the Child

When first meeting a child with a life-threatening illness, there are many unknowns. From your introduction to the patient until the day goodbyes are said, the dynamic nature of this relationship can inspire pediatric palliative care clinicians to continually learn and investigate optimal methods of caring for their patients. Your relationship, as the clinician, with a pediatric patient is of the utmost importance in promoting the best quality of life possible for this child. The development of this relationship will also facilitate treatment decision-making for the family and prevent the brunt of future hardship, such as complicated grief, that family members can experience if and when the child dies.

Building rapport with pediatric patients

Children need to trust that an adult has a genuine concern for them, rather than a superficial interest, in order to disclose the very vulnerable nature and emotional or psychological issues related to their illness. When this genuine interest is experienced by the child, a foundation for rapport can be achieved. There are elements to rapport building that occur naturally, through mere chance and chemistry, and other elements that require some preparation. Using what is known regarding patient history, allowing time for communication, such as through the child's or your narratives, and building trust are key elements in developing rapport and establishing a solid relationship with a young patient coping with a life-threatening illness.

To the degree possible, having advance knowledge regarding the child's medical and psychosocial history can facilitate not only the first interaction with the pediatric patient, but also with the rapport building necessary for subsequent interactions. Along these lines, bridging what is known and/or familiar to the child with new situations can be an effective strategy for building rapport. Bridging the familiar to the less familiar can be accomplished using kinetic conversations. which promote the child to act naturally within his or her environment. If clinicians consistently behave in the same way as other friendly adults who approach children and talk about pleasant things such as likes, dislikes, friends, or home, these types of conversations can help the clinician be associated with the good emotions these topics elicit until he or she becomes a more familiar, positive figure to the child.

Specific communication strategies to foster rapport building include using a personal line of questioning for the patient, providing rapport building statements, and opening up conversations. Inquiries reflecting a personal line of questioning demonstrate the professional's interest in the pediatric patient beyond the disease. These types of questions regarding topics such as favorite basketball teams, games, hobbies, increase the child's level of comfort and encourage the child to remember pleasant times and places and re-experience these pleasant situations. Rapport-building statements, such as “let's figure this out together” and using general supportive comments along with open-ended questions can facilitate making a connection with the older child. Younger children and those pediatric patients who are less verbal can draw pictures and write stories to express themselves when interacting with healthcare staff.

Opening up lines of communication by reframing negative experiences to shine light on what is more hopeful and possible regarding the child's quality of life is another method that can be used to establish rapport. Using allegory and storytelling, both from the healthcare provider's perspective and by asking the pediatric patient to tell his or her story are other ways to proceed. Arthur Frank wrote of the importance for allowing patients time to tell their stories in a narrative fashion, without interruption, and just being present for the patient. Being present without having an immediate agenda, such as taking a history or conducting a physical exam, can be a powerful tool in building trust and establishing rapport.

Other trust-building strategies reflect not only how the clinician presents him or herself, but also depend on the child's own expectancies of rapport with the clinician. Pediatric patient's expectancies of rapport play a role in how they experience their relationship with the clinician. Children tend to feel more comfortable with newly acquainted adults when they experience them in predictable ways. For example, children meeting a clinician may feel more ready to establish rapport with the adult when they first present themselves demonstrating typical adult behavior, such as reviewing the patient's chart rather than with atypical adult behavior, such as playing with toys. Promoting a sense of autonomy while still acting in a supportive way for the child will yield greater rapport than a controlling style. This can be achieved by respecting the child's perspective, that is validating the child's experience and granting the patient decision-making power where appropriate, as his or her initial perceptions affect the relationship. Even when acting in a supportive manner, if the child expects otherwise, such as a more authoritative approach, then the initial relationship may suffer. Clinicians should encourage children's openness to the relationship, by asking what their expectations are and dispelling myths regarding the role of the clinicians. Trust-building can sometimes be helped along if a parent is initially present or if the clinician uses a distraction technique such as play or props.

Daniel, 12, had multiple relapsed Hodgkin lymphoma. He was seen by the pediatric palliative care team to work primarily on establishing a quality-of-life plan while in treatment. Upon the clinician's arrival, Daniel said he didn't need another person trying to help him out. He told the palliative care clinician that he had managed to be in charge of his life since diagnosis and just felt that there was no need to have someone in charge of his quality of life in addition to his treatment. The clinician later discovered that Daniel thought the palliative care team became involved because his primary oncology team perceived him as not being responsible enough for his treatment. It took a couple more visits with Daniel by the palliative care team for him to realize that the palliative care clinicians were there for what he needed. The primary rapport-building strategy that the team used related to understanding Daniel's expectations and allowing him the opportunity to be autonomous and in control of his quality of life while the palliative care team acted as a consultant in a supportive role.

Influence of Familial Relationships

The child is part of a larger unit, the family. When considering how, what, where, when and if to speak with the child about palliative care and end-of-life issues, the history, and familial mechanisms and extents of communication must be appreciated. Acknowledging the individual child's role in the larger family unit, while taking into account the generational attitudes that affect issues, such as treatment decision-making and paying heed to how the course of illness influences family roles, can assist the clinicians in caring for their pediatric patients. It can be helpful to understand the extent of how protective parents have been in discussing aspects of the child's illness or other traumatic events that have occurred in the past. This will have a major influence on how they feel about communicating information and its implications to the child in the current situation. Therefore, it is important to assess the willingness for parents to share information early in the course of the child's illness, and to try to assist the parents in being as open and as truthful as they can in a developmentally appropriate fashion. It is often helpful to discuss with the parents how the child's sense that being told the truth can allay their child's fears, and that attempting to hide certain aspects of the disease and its consequent therapy may increase fears, and lead to the child no longer trusting the parents.

In many families it is not only the parents that deserve consideration in healthcare care related discussions. Often, families include at least three generations, and attitudes of the grandparents toward discussing issues with children also influence the approach to the parents. With the additional stressors of life-threatening and life-limiting disease, the clinicians caring for the child can take into account the complexity of the prior and current intra- and inter-family interactions and psychological issues, including divorce, and how these may affect discussion with the child.

The role of the child in the family and the ability of the clinician to help guide the family is a dynamic process that can be dependent on the stage of disease. Often, early after the diagnosis, protecting the child seems most important, and because there has not as yet been the opportunity to establish a relationship with the clinicians, the ability to guide families may not be optimal. With time, especially if the family feels more comfortable that the clinicians care for their child and his/her overall well-being, increased trust may develop, and guidance by the healthcare provider is much more accepted by the family. However, when the disease trajectory changes, and issues related to palliative rather than curative care are being discussed, there may again be reluctance to burden the child with information or choices. It is important both to respect the feelings and needs of the family and at the same time try to help them speak with their child and permit you to do the same. Determine if the family is willing to allow these discussions to occur only in their presence, or permit private discussions between the clinicians and the child. It is often helpful to tell parents that sometimes children try to protect parents in the same way that parents try to protect children, and that their child might feel more comfortable discussing his or her concerns without them present.

For adolescents with life-threatening illnesses, it is even more important to determine how the family affects them and the ability of the clinicians to discuss important issues. While it might seem as if families would be more willing to allow discussions relating to palliative and end-of-life care with teenagers, again, the history of communication within the family and the decision-making processes need to be examined. In part, because the concept of death and its finality is more developed in adolescence, some families are even more uncomfortable in having clinicians discuss these issues. Establishing good and open relationships with both the parents and child can have a major impact in how accepting the parents are in having these conversations occur.

There are times, such as in the case of Maria, however, when family and cultural issues can have profound effects on the ability to communicate with the child about important issues.

Maria, 16, had advanced soft tissue sarcoma and came to the hospital from Greece for experimental therapy. She was a bright and highly interactive young woman. She had not been told that she had cancer, but had been told by her mother that she had tuberculosis and needed special therapy. One of the conditions the physician agreed to in caring for this child was that he would not tell her about her condition.

Maria's cancer initially responded to the therapy, but after a year, in which the doctor established a good relationship with both Maria and her family, there was concern about disease recurrence. A lung biopsy was recommended to diagnose the problem. Again, the physician approached the family and asked if he could discuss the nature of Maria's condition with her before they spoke about surgery. Because they now trusted him, they said that he could have that discussion. He then met with Maria, alone, and mentioned that he had been treating her for over a year, and asked whether she would like to know what disease she had. Despite coming to an oncology clinic, and being transported in a van from the American Cancer Society, Maria said that she did not want to know. The biopsy showed recurrent disease, and Maria and her family returned to Greece, where she died a few months later. The family was extremely grateful for the care Maria received and the respect they received regarding their familial and cultural mores.

Clearly Maria knew what the disease was, but based on the messages she had received from her family, not talking about the nature of her disease was part of the family coping. This demonstrates how cultural and family relationships can greatly influence how and what is communicated to the child. The complexities of family relationships do affect all aspects of communication with children and adolescents, but they do not make these interactions impossible. Understanding and respecting family structures and values by the clinicians are necessary for establishing the best approach to discussing palliative and end-of-life care with the child, and thoughtful and caring guidance of the family during the illness can optimize the potential for effective discussions.

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