Why is effective communication important in pediatric palliative and end-of-life care?

The attention given to communicating with a seriously ill child and his or her family is attributed to the belief that effective communication helps the child and family to:

Additionally, providing children with information about their diseases and treatments meets legal regulations and ethical considerations^8,17 in terms of assent and consent. Finally, carefully communicated information about illness and treatment can also promote self-care behaviors in the ill child, such as learning to recognize and avoid high-risk situations,¹⁸ and promote child participation in treatment decision making.^16,19,20 On the other hand, insensitive or incomplete communication is reported to be distressing to the pediatric patient and his or her family, including the siblings.²¹

What are the guiding principles of communicating effectively with the seriously ill child and family?

The complexity of communicating with seriously ill children is well recognized by clinicians and is underscored in their reported anxiety about discussions with these children and their families.^4,22 Perhaps as a direct result of the complexity and importance of communicating with children and families, clinicians have created guides and principles intended to assist in their efforts to communicate with children (Table 19-1). The first principle of communication between a child and a clinician is that the communication needs to always take place within a family context.²³ Families enter into an illness experience with a style of communication already in place. Effective communicators recognize that parents and guardians are the most knowledgeable about their child and are thus the experts about the child²⁴ (Box 19-1).

Just as every family is different, children and families experience illness in their cultural context, and medical communication should be sensitive to the differences in information needs and decision-making styles. Although many clinicians in the United States prefer to provide information about diagnosis or prognosis, internationally this is not always the case, and in part these clinician traditions reflect the pervading beliefs and preferences of the families in those areas.^10,25 Whenever possible, clinicians should accept the standards within a family. Some knowledge of the family’s culture of origin may be helpful; cultural brokers, for example, may be able to offer insight into general standards of communication and areas that are particularly different or sensitive.²⁶ However, assumptions about the meaning of culture in a particular family should be avoided.^26,27 The clinician’s best tool for learning about communication within a family is often humility; a willingness to ask about the way the family likes to communicate and make decisions should be accompanied by an openness to respect that family’s style.

Parents can vary in their preferences for who shares serious information with their child. Some may prefer that a trusted clinician have these discussions alone with the child or in the presence of the parents; while other parents may not want the clinician to be the one to initiate certain discussions with their child. They may prefer to initiate the discussion themselves. In the latter case, there remain important roles for the clinicians, including preparing parents for the discussions with their child and being well informed or even present when the parents share information with their ill child. There may be a natural parent reluctance to share serious information with their child.²⁸ Reluctance could include fear of the child’s emotional reaction, loss of hope about the situation, or diminished willingness on the child’s part to interact with the parents and others. Clinicians can help prepare parents for these discussions by exploring underlying reasons for concerns, offering suggestions for possible ways to share the information or even role-playing with the parents in advance of the discussion. Parents have indicated that after they or the clinicians have serious conversations with their child, they want clinicians to treat their child the very same as before the child’s condition became more serious.²⁹

The second guiding principle is that communication is making a human connection. Literature offers instructions on how to deliver bad news.^30,31 These are helpful tools but the most central point to effective communication between a clinician and a child is the intention to make a human connection in which honest information and feelings are shared. Clinicians are first providing care for a person, and then for the person’s condition.⁶

The third guiding principle is to thoughtfully prepare for sharing information and feelings. As noted in Table 19-1, the guidelines for communication include steps to assure that all relevant individuals are included in the discussion. It is also important that a quiet setting is available for an uninterrupted discussion and that to the fullest extent possible no anticipated interruptions occur, instead ask a team member to handle the pagers for those who will be in the discussion. Openness to conversation is particularly important. With children, an open invitation to talk should be accompanied by careful listening for cues that the time is right. A clinician who is too busy when such glimpses into a child’s thoughts occur may miss important opportunities. In addition, clinicians may wish to create opportunities for interaction including quiet presence on a regular basis, not just when there is medical news to be delivered. The spaces between the news may be rich with meaning that informs all other interactions. Presence also sends a powerful message about the consistent caring the clinician provides and the value of the child and family.

The fourth guiding principle is that communication is never a one-time event but is instead ongoing,³² with the clinician being attuned to clues from the child about information needs. In addition to being sensitive to clues from the child, it is helpful when the clinician directly offers to revisit a topic or conversation or specifically solicits questions about any aspect of care. Communication is not limited to when a change in the child’s condition or treatment is occurring, but it is especially critical for such times. Children find it helpful when clinicians address how the clinical change occurred, if this can be determined, and particularly for the younger child, when clinicians clearly state that the child is not to blame for the change.³

The fifth guiding communication principle is for the clinician to get invited by the child to engage in sharing information, thoughts, and feelings. Clinicians will seek the invitation through their unique styles that develop over time; some may do it directly, others using a metaphor or vehicle such as sports, play items, or books. The likelihood of being invited is increased from the point of diagnosis forward when the clinicians tell the child about their willingness to keep the child informed and to answer questions. Being invited signals respect for the child, as it allows the child to decide the timing for the exchange of information, ideas, and feelings. This is taking time to establish a relationship and a rapport and seeking to build a partnership between the clinician and the child.¹⁶

A sixth guiding principle is there are times when a single mode of communication will be insufficient with a child or the family. Helpful examples of verbiage have been published.^3,33 Other forms of media can also be very helpful in sharing information and feelings between clinicians and children include drawings.³⁴ Perhaps one of the most powerful of communication tools that a clinician can use is silence. Clinicians must be able to quiet their own thoughts and not try to plan their next comment but instead listen with the intention of discovering an insight about this child, family, situation, or about self.³⁵ Listening without interruptions is a very sophisticated skill and one that is least-frequently practiced by clinicians. Communication is sharing information and feelings that is intended to be understood in the same way by the child and the clinician and most typically requires more than one method. Whatever mode is selected for communication, the endpoint goal is the same: The child and parents will feel listened to and respected.³⁶

The seventh principle is to recognize that communication, as with all other skills in pediatric palliative care, involves a team of clinicians. Before the meeting with the family, team members may wish to meet together to plan and designate a team member to lead the discussion. In certain discussions, particularly those involving a change in the child’s condition, the physician may take the lead in initiating the conversation. However, when a team approach is used, non-physician team members may be effective leaders of the conversation, with the physician present for input when necessary. In addition, certain team members may wish to address specific issues without leading the entire meeting. For example, a psychologist may wish to address the child’s emotional needs as an important component of the meeting, or a physician may wish to clarify recent medical events. The team’s pre-meeting discussion can help to plan which roles individual team members will take and the best ways for the team to collaborate during the meeting itself.

What transpires during the discussion is important, and what transpires after the discussion is as well. Commonly, some members of the interdisciplinary team are present during the discussion without leading the conversation. These team members may insert comments meant to clarify content and confirm the child’s understanding.³⁷ Following the discussion, individual team members may linger with the patient and family or return subsequently to encourage the child and family to ask questions.³⁸ Careful documentation of all of these exchanges is needed so that all clinicians can be well informed and not need to ask the family to repeat to them what transpired. One professional organization, the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, recommends that a communication protocol be created for each healthcare setting that contains the expected behaviors of each member on the clinical team for communication including that related to diagnosis.⁴ In addition to providing the family with the opportunity to reflect on the conversation afterward, interdisciplinary team members may actively participate by observing interactions carefully, recognizing and attending to emotional content, and being alert to miscommunications. These roles may be difficult for the clinician who is leading the conversation to fully take on. The team can also serve as a source of support to one another, working together to reflect on these encounters and helping one another feel sustained in this difficult work. Finally, team members have a role in simply witnessing these profound discussions. Even if some members of a team don’t say a word in a family meeting, simply by being present they convey a message that the conversation is important and meaningful and that the child and family are as well.

When communication efforts do not go well

Even seasoned clinicians at times find that, despite their best efforts, a communication interaction has not gone well. There are many reasons why these interactions sometimes feel difficult, not the least of which is the overpowering emotions that families often feel in these encounters. It is natural that at times their anger or sense of powerlessness at a difficult situation sometimes emerges through displacement of emotion onto the team. In addition, even the most caring clinicians will at times say or do something that causes distress to the family or child.

When this happens, it can be helpful to process the experience with the help of the interdisciplinary team, to reflect honestly on one’s role in the difficult encounter and the emotions that such an encounter produced in the child and family, as well as in the clinician. The team can then develop a plan for how best to move forward with the child and family.

Sometimes families are simply unable to move forward with a particular clinician or even the entire team, and when this happens, the family’s needs should be respected whenever possible. Most of the time, however, children and their families are able to recognize that every encounter will not be as difficult, particularly when a caring relationship has already been established among the child, family, and clinician. The clinician may wish to meet with the family to discuss the encounter, to express regret over the family’s distress, and to express caring for them and a desire to work toward a better relationship in the future. When the family is willing to discuss the difficult encounter, a discussion about the process can be helpful. For example, the clinician may wish to ask the family for guidance about how best to discuss some of these issues in the future. The clinician should listen openly to concerns and respond honestly with hopes for things to go better with time. Impossible promises, such as promising to avoid ever making mistakes in the future, should be avoided, but honest statements about a desire to always listen and work toward meeting the needs of the family may be appreciated.

Clinicians should remember to be forgiving of themselves in such encounters as well. Much of the time, difficult encounters are not a result of a thoughtless or unskilled clinician, but rather the result of a situation that is painful for the clinician. Clinicians who have difficulty talking with the child about diagnosis, treatment, and prognosis are likely struggling themselves with the sad clinical situation.^39,40 All clinicians need support during these difficult times but clinicians who avoid communicating honestly with children need immediate support from other members of the healthcare team and particularly from a senior clinician who has recognized abilities to communicate well with seriously ill children, a willingness to demonstrate those abilities and who has respect for fellow clinicians who do not yet have such skills.

Sharing information about prognosis

Much of the literature on communicating about advanced illness comes from studies of adults with metastatic cancer, in which the disease course is often relatively predictable and typically involves a progressive decline from diagnosis to death. For children with life-threatening illnesses, however, the trajectory can be unpredictable, often lasting over many years, and marked by exacerbations and reprieves from symptoms.²⁸ For families and children who experience these long, complex illnesses, the ups and downs of illness can make the larger picture difficult to fathom. It is particularly important, then, for clinicians caring for the child to help the child and family understand what the future may hold, so that appropriate decisions can be made all along the trajectory.