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.

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.¹³

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.^14,15 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.¹⁶ 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.

Communication Across the Disease Course

Communicating with a child who has a life-threatening illness is often a very daunting and heart-wrenching task, even for pediatric clinicians with years of experience. Little training is offered on how to approach end-of-life communication with children.¹⁸ In addition to dealing with the pediatric patients, healthcare providers must deal with the emotions of parents. Sharing information at the beginning of the illness with the child can establish trust; however, end-of-life issues should be discussed only if the clinician has already developed trust and a rapport with the patient.¹⁹

Frank discussions about death with children still remain relatively uncommon in most acute pediatric settings. Unfortunately medical staff tend to comply with parents’ well-intentioned, but potentially detrimental requests, for non-disclosure regarding the child’s prognosis. Staff members find themselves worrying that any confrontation with parents may harm the fragile trust that has taken a long time to develop with the family. While aiming to respect parental decision-making authority, communication obstacles regarding disclosure to the child can cause clinicians to feel despair and grief about the impending loss of their pediatric patients. They can also incur a sense of moral distress if they are unprepared to provide sufficient support for the dying child.²⁰ Published guidelines stress the importance of open, honest communication with dying children, but there is relatively little information available regarding concrete suggestions and practical help regarding disclosure discussions and post-disclosure support.^21,22

At diagnosis, the healthcare team sets the groundwork for trust and honesty in their relationships with parents and patients, so parents will feel comfortable to allow independent clinician-child interactions. The best approach is a flexible one that adapts to the child’s and family’s needs. In adolescents, the approach also needs to foster personal growth of the patient throughout his or her experience with illness. Clinicians should take opportunities to promote decision-making in simple choices, such as allowing the child to choose the flavoring for oral medication.²³

Assessing for communication barriers occurring within the family while asking open-ended questions in order to establish a framework for communication with the child throughout the disease course can be accomplished using strategies such as Beale’s¹⁹ 6 Es for communicating with the dying child. These 6 Es are:

Communication strategies such as the 6 Es can also be helpful in eliciting information to create a preliminary quality-of-life plan for when the child is first diagnosed with a life-threatening illness. This important element to the plan of care will allow for all members of the child’s team to have clear expectations of who is accountable for what elements of the child’s care and will also promote clear communication for future care coordination.²⁴

During the treatment phase, the clinician must be clear in his or her communications with the child regarding the nature and course of the illness and possible treatments. If age appropriate, helping the child weigh important treatment decisions can be accomplished through “what if questions,” such as “what if a clinical trial is available to you, but it means feeling extreme nausea and fatigue for many months—would this be something you would like to consider?” Communicating choices that offer a degree of independence, such as time away from the clinician and hospital, is also something that can provide empowerment to the child during the treatment phase.²³

Children have discussed their preferences for interpersonal relationships with their healthcare team. In multiple studies that queried the child directly, their main concerns revolved around communication. Overall, they appreciated openness and honesty; expressed needs for reassurance, support, and empathy, as well as to be taken seriously; while having sufficient time to talk, explain, and come to terms with their illness and treatment.^25,26

Regarding information exchange preferences, a group of seven Dutch cancer patients, ages 8 to 17 years, participating in a study stressed their rights to be fully informed about their illness and treatment, but this varied slightly depending on the individual child’s survival rates and prognosis. Clarity on information about illness and treatment, age-appropriate language, and content of information were also identified as important. However, they wanted only general information during diagnosis, and then more detail in subsequent consultations. They commented that the majority of information was lost due to the shock at diagnosis, thus repeating explanations and answering questions were key elements to meetings with the healthcare team. At times, this group of patients preferred to use their parents to facilitate communication with their physician; however, they wished to be able to reach their healthcare provider, themselves, at all times. Preferences included wanting to collaborate in making decisions, but they admitted that sometimes they were prevented from doing so.²⁵

At end-of-life, communications regarding physical issues (such as symptom management) as well as discussions around more existential issues (such as what they wish to leave behind for people to remember them by) are critical to the well-being of the child. It is important, once again, to assess the child’s awareness and how much knowledge the child would like to have regarding his or her stage of disease. Clinicians can use multimodal methods, such as simple drawings, other visual aids, play, and/or written materials that include verbal communication to provide pediatric patients with information about end stage disease. During end-of-life care, clinicians, listening to fears and praising strength, and pausing for silent reflection, can help patients achieve peace of mind despite a terminal prognosis.²⁷ Often, just hearing that their clinician will be there for them allowed patients to feel comforted and not abandoned^27,28 (Table 14-1).

TABLE 14-1 Communication Strategies for Use with the Child Across the Disease Course

Developmental Issues in Speaking with Children about Palliative Care and Death

Developing an understanding of life, death, illness, and how one sees relationships with parents and others in light of this knowledge is a process that occurs in childhood and adolescence. These changes are important for clinicians to understand so that they may guide children to comprehend and respond to information regarding their illness and its implications. This is especially true for discussing death and palliative care with a child who is terminally ill.

Questions typically arise regarding whether the child should be told that he or she is dying, who should discuss this with the child, and how should the child be told. The answers to these questions require individual assessments as to the readiness of both the child and family to hear the information, and the additional issues of children’s and adolescents’ changing concepts of death that occur with development.

While there is not much known about what the child senses, even without discussions, it has been reported that young children who were terminally ill displayed greater anxiety than children who did not have a life-threatening illness.¹³ What was also clear from this study was that even though the terminally ill children were not told they were dying, many were aware of it, as demonstrated by the tales they told involving death.

There are a number of myths concerning children in terms of their grief and their awareness of their situation. Children do grieve loss although they may express it differently, they grieve as much as adults, they cannot be protected from death, and grief in children has no time limits. Despite belief to the contrary, terminally ill children typically know they are dying, thus adults’ denial can be ineffective in protecting children from this knowledge.²⁹

While there are definite stages of development that children and adolescents go through, when, how, and what affects this development may be variable and influenced by having a chronic, life-threatening illness. The guidelines described below are important to understand, but it is equally important to realize that individuals mature at different rates and not all aspects of development occur together.³⁰

An overview of children’s concepts of death as a function of age is presented in Table 14-1.²⁹ While each child may be different, these guidelines are very helpful in aiding the clinician in knowing what the child understands about death and what finality might be, and this information can be used to help the clinician approach the child and help guide the family in their discussions. The clinician needs to keep in mind when thinking about the developmental issues that despite their age, many children know they are dying, even if they don’t know exactly what that means.^19,27,31 Also, depending on the age, forms of communication besides oral discussions can be very helpful. These include play, art, and writing. Often the use of these alternative forms of communication makes it possible for the child to start discussing his or her fears and understanding of the nature of the illness.^32,33 In addition, depersonalizing the discussion may make it easier to learn what the child is thinking about the nature of death. Speaking about friends or family members who have died may help the clinician learn where in the developmental path their patient is. Children do grieve differently from adults. They often grieve intermittently, and the grieving can change as they begin to get a better understanding of death.^34–36 There are also books available that discuss the deaths of animals, which can be used to begin the discussion of what death means in an age-appropriate manner. Examples include The Dead Bird, by Margaret Wise-Brown, which is appropriate for children ages 3 to 5, and When Dinosaurs Die: A Guide to Understanding Death, by Laurene and Marc Brown which can be useful for children between the ages 4 and 8 (Table 14-2).

TABLE 14-2 Overview of Children’s Concepts of Death

Adapted from: Himelstein BP, Hilden JM, Boldt AM, Weissman D: Pediatric palliative care, N Engl J Med 350(17):1752-1762, 2004.

Cultural Issues

Culture acts as the framework that directs human behavior in many situations. Cultural backgrounds influence families’ preferences and needs about discussing illness, decision making, and death. This is especially true in dealing with medical illness in their children. It is broadly believed that cultural values, beliefs, and practices play a critically important role in determining how families care for their children, interact with clinicians, and discuss disease and end-of-life issues. Reluctance to disclose information about a serious illness to a terminally child is not uncommon in many cultures, and discussions about dying and death may be avoided entirely.³⁷ Several studies highlight the underlying values that determine the communication patterns among children, parents, and families in different cultural contexts. For example, studies with Chinese,³⁸ Greek,³⁹ and Japanese parents⁴⁰ have shown that in these cultures, parents try to protect terminally ill children and their siblings from any knowledge regarding the disease and the likely outcome of the illness.

In order to both aid the family in coping and determine what might be the best mechanism to discuss the illness and its trajectory with the child, clinicians need to consider the family’s culture. Assessment needs to include the culture-based health beliefs and practices, religious rites, thoughts about how and why illnesses occur, and meanings attributed to childhood suffering and death, in addition to how their culture and family feel about speaking with their child about illness and death. For example, in Chinese families there is a belief that bad news or sadness should not be discussed with children.³⁸ By respecting this particular cultural belief and other family values, professionals can avoid burdening families with their own cultural models of healthcare because professional models may not necessarily promote quality near the end of life for a given patient and family. In order to know what the cultural issues are for that family as they may affect communication with the child, the clinician should use respectful and open-ended questions about how the family wants the issues related to palliative and end-of-life care addressed to the child. While it is not unreasonable for the clinician to provide information as to how children can benefit from honest and caring discussions, if the culture of the family is such that these discussions would be seen as counter-productive, the wishes of the family should not be ignored.

As discussed in the previous section on how family issues affect communication with the child, it is crucial to realize that how the family responds to communication issues is often culturally driven. The description of 16-year-old Maria, who elected not to be given the name of the disease she was being treated for, is as much related to the culture of her family, as to the family itself. Given Maria’s background with her individual preferences, providing her with the diagnosis she did not wish to receive would have only closed lines of communication further among her, her family and her physician. This was acknowledged by the physician, and led him to not press the matter. As a result, he was much more effective in helping both the child and family during the difficult terminal phases of the illness.

In some cultures, medical decision making is done with religious or social leaders, and how and what is told to the child is in large part decided on their advice.⁴¹ Because these individuals can be very helpful to the family during the stressful times related to their child’s illness and death, respectful conversations may need to include these cultural or religious leaders.

Both verbal and non-verbal language barriers between caregivers and parents often are very challenging when trying to communicate to them the desire to speak honestly with their children. While most children speak the language of the country they reside in, often parents do not speak this language fluently, if at all. Medical interpreters are important in helping families hear the reasons why the caregiver thinks it is important to speak with the child.

The following observation describes the importance of culturally-driven, non-verbal communication with children. As part of the process to determine how a pediatric palliative care program should be established, a needs assessment was performed. A Spanish-speaking social worker discovered that Latino families often mentioned that the display of affection toward their child by the professional not only made them feel better but also affected their view of the competence of that individual.

This type of non-verbal communication, while embraced by individuals of most cultures, seemed to have a greater impact on the effectiveness of the clinician in being able to develop trust with the aforementioned family. When certain culturally specified non-verbal communication is absent from a scenario, it becomes a barrier to trust and confidence in the medical team. The families often report being confused, isolated, and distrustful of the hospital system.¹⁷ The role that culture plays on the ability to communicate with children of various ethnic backgrounds is only now emerging, and investigations on the impact of culture and language in communication with terminally ill children needs to occur if we are to be most effective in making palliative and end-of life care available to the diverse group of children under our care.^42,43

Boundaries—Where the Relationship with the Child Begins and Ends

Interactions between clinicians and their patients, by their very nature, result in the establishment of a relationship. These relationships differ in intensity depending on the individual caregiver, child, family, and situation. While it had been thought in the past that involvement by a clinician in the personal life of a patient was to be strictly avoided because it may interfere with the professional relationship, this is no longer believed to be true by most clinicians working with children with life-threatening illnesses. In fact, it is generally believed that optimal care of a patient with chronic, life-threatening disease is enhanced when the clinician and patient have established strong bonds.

Children respond better to, and are more at ease with, clinicians who they sense have an interest in them as individuals.² Thus, there are great therapeutic benefits to children and their families when providers form meaningful relationships with their patients.^44,45 There are, however, risks associated with relationships that could deleteriously affect the role of the clinician with the child or family.

These boundary issues become potentially more problematic when the stresses of end-of-life care are added to the relationships. Boundaries between clinicians and patients need to be mutually understood in terms of the physical and emotional limits on the nature of the relationship.⁴⁶ When they are not understood or adhered to, unnecessarily harmful effects can occur to the patient, and enhanced stressors can develop for the professional. Appropriate boundaries can help ensure that not only will the patients suffer less, but also that equity in dealing with all patients will be enhanced and perceived.⁴⁷

Two overarching principles must be kept in mind for the professional in terms of interactions with the child and family. First, while it is unavoidable and actually helpful when the relationships between patients and clinicians result in the professional benefiting from the interactions, it must always be kept in mind that this benefit must never be at the expense of the child or family. Second, while serving as a caregiver for the child and family, these relationships need to be such that they do not negatively impact the role of the clinician as a professional caregiver. If the relationship becomes more personal, and the clinician begins to assume the role of a friend or family member, it can have negative impact on the care of the child and family. It is the effect of the personal relationship, rather than the relationship itself, that needs to be considered. The clinician, while grieving for the child and family, should not allow this to affect his or her professional role, and should not be looking for comfort from the family at their expense.

Relationships with the family may continue after the death of the child. It is necessary for the clinician to decide whether he or she is still in a professional relationship with the family⁴⁸ and acting as a caregiver, or whether the relationship has changed and the clinician is no longer part of a therapeutic team, but has become a friend or colleague. The effect of not addressing this issue is that the clinicians become uncertain of their role, and this can add stress to both them and the family. For the clinician of an adolescent, the proximity in age with young clinicians can sometimes make boundary issues problematic. Identification of the clinician with the patient, or the patient’s need and desire to have someone to relate to of a similar age, can lead to involvement in the private lives of each other, which results in an increased risk of overstepping professional boundaries, and for the professional being less effective as a clinician. When the sexes of the patient and clinician are different, there is an additional danger of fantasizing by the adolescent patient that the clinician might be a sexual partner. Excessive involvement of the clinician in the life of the adolescent patient may enhance these thoughts, and need to be considered by the professional to ensure that appropriate boundaries are not crossed.⁴⁹

Boundary issues can occur for multiple reasons. Consideration must be given to the fact that the child and family come into the diagnosis of a life-limiting disease with a prior history. While for most individuals, it is the situation that produces the need for closeness, there are some individuals with certain personality types or who have psychiatric disorders, in which they may not be able to recognize or respect normal boundaries.⁵⁰ While this is uncommon with children, it still can occur with their parents, and can complicate pediatric care. Cultural differences between patients and clinicians might lead to misunderstandings of the relationships that are developing between patients and their clinicians. What one culture interprets as appropriate professional-patient interactions, may be seen as inappropriately close in other cultures. In some of the Asian cultures, touching or holding patients and family members is seen as intrusive, while among some Latino communities, not showing affection to children decreases the sense of the value of the clinician.¹⁷ The stresses and burnout experienced by clinicians can lead to them crossing boundaries for their own needs. Clinicians often do not give themselves permission to deal with the effects of their patients’ illnesses on themselves, and this can result in them not realizing when they are crossing appropriate boundaries.

Indications that appropriate boundaries are being blurred may occur when either accepting or giving gifts, when patients want to know personal information about their clinicians, or when the clinician shares personal information with the child or family. While these phenomena in and of themselves may not cross appropriate boundaries, they are of concern if they lead to the clinician losing therapeutic effectiveness in the care of the child or in the interactions with the family. Not all of these boundary issues are harmful to the therapeutic relationship between the clinicians and the patients and families, and some may even enhance care and serve to reinforce the caring interactions. However, it is important that the clinicians question whether these boundary-blurring activities result in some children and families being treated differently than others, whether the feelings these interactions elicit impact clinical decision-making, and whether the need for these interactions are the result of his or her own stresses or burnout.⁴⁵

Managing boundary issues are important for the care provider if he or she is going to be optimally effective and not harm the child or family. If appropriate, it might be important to set clear expectations with the role of the professional in the care of the child. If the clinician is concerned about the effects of boundary blurring on the child and family, it can be very helpful to seek the advice of a mental health professional that is not directly involved in the patient’s care. If these options do not prove to be effective, another path might be to find another healthcare provider to take one’s place in caring for the patient.

An example of how assistance by a colleague can help clinicians when faced with boundary issues is demonstrated in the following case.

Close relationships can have positive therapeutic effects both for the child and family, and may be sources of solace to the family even years after the death of the child. Thus, the issues related to boundaries should not prevent these relationships from occurring.

The following case is an example of a relationship with a child and family that, while close, never interfered with the role of the clinician with the child or family, and continued years after the child died. This has resulted in positive consequences for both the child and family, and enrichment in the life of the physician.

The closeness of relationships, by themselves, are not necessarily good or bad, but always need to be considered in terms of whether they benefit the child and family, and not just how meaningful it is to the clinician.

Saying Goodbye

The finality of any death is a reality difficult to imagine. This finality can appear even more incredulous when dealing with the impending death of a child. Saying “good-bye” to a child can be done directly, by saying the actual words, and indirectly, by discussing the history of the relationship and using other words to close the relationship, depending on the nature of the relationship that has been established. If a healthcare provider is not given or does not make use of an opportunity to say good-bye to a child, this can create a long-lasting impact on the clinician both from an emotional standpoint as well as from a professional perspective.⁵¹ Not saying goodbye denies the clinician the opportunity to say final words, and/or from relaying messages in order to fully close the circle of the relationship. Not having the moment to say goodbye may trigger doubts in the clinician about whether the child knew the extent of the clinician’s commitment to his or her care.

The importance of this act cannot be understated, but often, clinicians are unsure of when and how to say goodbye. Timing for when it might be appropriate to say goodbye can be challenging as the following questions may arise when ultimately deciding how and when to express oneself: Is the child ready to hear a goodbye? Will the parents want me to say goodbye? What will the emotional reaction be like for the child? Will saying goodbye be too difficult for me as the clinician? Will I say goodbye in the right way?

Preparation and timing is needed for this to occur in a way that is helpful for the child, his or her family, and the clinician. The timing and exact words are ultimately determined on a case-by-case basis.

Very little information has been described regarding timing, along with the words and discussions that occur during the closing moments between a clinician and the pediatric patient at the end of life. What has been described are the emotional reactions of the healthcare team following the death of their pediatric patients.^51,52 With the scant amount of information on this topic, clinicians are left with little direction for how to proceed in this important clinical situation.

For parents, it takes longer to become emotionally aware of the impending death of their child than it does for them to become intellectually aware of it. Not being emotionally and intellectually aware of the impending death can lead to anxiety and depression.⁵³ Parents who were given the time to process their child’s impending death felt better able to prepare.⁵⁴ In many ways, this important paradigm can be extended to the clinician, such that the emotional component of saying goodbye to a pediatric patient may take time to be fully realized even though the intellectual component is what the clinician is operating under most of the time. Thus, taking the time to prepare for saying goodbye will be an important step for the clinician.

In other clinician-patient relationship paradigms, such as in psychotherapy, the end of the professional relationship or what is termed as termination needs to be a planned process that starts from the beginning of the therapeutic relationship.^55,56 In order to prevent the adult or child client from feeling abandonment or anxiety, the clinician can set goals regarding his or her working relationship so that as the end of that relationship nears, the client feels a sense of mastery or fulfillment. In the case of pediatric palliative care, where death can be the final outcome for the child, a sense of mastery and fulfillment can still be reached at the end of the therapeutic relationship when the clinician and child say goodbye to one another. Using developmentally appropriate language, the clinician can emphasize the strengths of the child, how he or she coped courageously with all medication changes, and the positive changes made, such as how he or she learned to communicate effectively.

Goodbye rituals such as a celebration of life, a closing letter, or another activity that is meaningful to both the clinician and child can also be a significant way to close the relationship.⁵⁵ Clinicians can create a goodbye book similar to a yearbook that professionals can sign, and while creating this book, children can express themselves with pictures and words.⁵⁶ Parents can also be a source of support by helping the child process the goodbye from the clinician.

While there have been more opportunities for clinicians to communicate their commitment, meaning of their relationship with the child, and final words to their pediatric patients, there are still many areas needed for continued growth. Progress and new knowledge in this field will not take away from the fact that the death of a child will be a sad experience for all those involved.