Physical Address
304 North Cardinal St.
Dorchester Center, MA 02124
Practical Aspects of Communication
People are disturbed not by things but by the view they take of them. They may forget what you said, but they will never forget how you made them feel.
—Carl W. Buechner
Perhaps the most important thing we bring to another person is the silence in us. Not the sort of silence that is filled with unspoken criticism or hard withdrawal. The sort of silence that is a place of refuge, of rest, of acceptance of someone as they are. We are all hungry for this other silence. It is hard to find. In its presence we can remember something beyond the moment, a strength on which to build a life. Silence is a place of great power and healing.
—Rachel Naomi Remen, M.D., in My Grandfather's Blessing
When our daughter was dying in the intensive care unit, our physician was in the room with us and he did not say anything, but he put his hand on my shoulder and joined us in prayer. And that is what I remember still six months after my child died and that quiet touch is what comforts me.
—Mother of a deceased child
Juan was a 10-year-old boy with refractory leukemia. He was a boy full of love for his family and friends. As Juan's cancer progressed, it became clear to his clinicians and parents that the end of his life was near. His parents wanted to make sure he was aware that he was dying and that he had the opportunity to talk about it, but they felt unable to initiate this conversation themselves because of their intense sadness. They asked his physician, Dr. K., to speak with Juan privately.
After a conversation about how Juan was feeling, Dr. K. asked Juan what else he would like to talk about during their time together. Juan's eyes widened, he sat up in bed, and said, “Am I going to die?” When Dr. K. responded by asking Juan what he thought about that, Juan said, “I think I am.” “Yes, Juan,” Dr. K. replied quietly, “I think you will die, too.” Dr. K. paused, then asked, “How do you feel about that?” Juan described worries about his parents and brother and sister, wondering how he could help everyone if he was no longer alive. Dr. K. asked Juan what he believed would happen to him when he died. Juan replied, “Heaven.” “What does Heaven mean to you?” Dr. K. asked. Juan replied, “It means that my family will be OK, and that they will know I love them.” Dr. K. affirmed the beauty of this Heaven. Juan spoke at length about his thoughts of Heaven while Dr. K. quietly listened. As the conversation drew to a close, Dr. K. spoke about the special things she would always remember about him. Dr. K. asked Juan's permission to talk about their conversation with his family.
Being able to effectively talk to children honestly about their physical status and illness, their treatment, and their prognosis in ways that are matched with their age, maturation and clinical situation is expected of clinicians. This expectation spans all clinical settings from primary care to emergency care unless there are extreme circumstances such as a parent or legal guardian forbidding that kind of talk or the treating culture is opposed. The American Academy of Pediatrics (AAP) has produced a technical report, which states communication competency that includes cultural effectiveness is part of the ideal standards of behavior and professional practice for pediatricians. The AAP also issued a policy statement indicating that primary care pediatric clinicians need to be able to elicit concerns from children within their cultural context. Even more specifically, professional specialty associations have issued position papers making explicit the expectations that clinicians will be willing and able to effectively and compassionately share information with a child regarding the nature of the child's illness, the type, duration and likely experience and outcomes of its treatment, and to be readily available to revisit the discussion as the child signals need.
For most child patients, life is centered within a family and communication occurs within that context. Although communication with children is a crucial skill, communication with the entire family is no less vital to care for the child with a life-threatening illness. Thus the guidance offered below considers communication in the setting of a relationship among the clinician, child, and family, with respect for the highly individualized nature of family relationships.
What Is Effective Communication?
Effective communication is the making of a human connection with a child and family. The transmission of information, while essential, is by no means the only role of effective communication. In addition, the communication encounter serves as the foundation for a relationship that unfolds over time. Communication provides the clinician with the opportunity to learn about the child and family: who they are as people, their beliefs and sources of support, the meaning of the illness in their lives, their needs, their goals, their hopes, and their fears. As such, vital roles by the clinician include listening and eliciting information in the encounter. Resulting knowledge allows the clinician to communicate in a way that is helpful for this child and family, to provide care specifically tailored to them, and to consider who they are as people along the illness trajectory. This knowledge serves as a foundation for effective decision making and as a foundation for a meaningful therapeutic alliance, which in itself can support end-of-life decision making. Much of this can be achieved not through the use of particular words, but through caring interaction among the child, family, and clinician. Although the language used matters, the emerging clinician-child-parent relationship matters more. Therefore, although specific words and phrases may be considered as possible tools for these conversations, clinicians who approach these encounters with a sincere desire to listen and get to know the child and family, and to be trusted by them, are likely to be the most successful.
Although the clinician may come into the communication with an agenda for transmitting information about the child's illness or plans for care, quiet presence and a willingness to allow the encounter to unfold cannot be overemphasized as a foundation for the interactions that form a relationship. This conversation is part of a relationship, and not a single interaction; the outcome of any one conversation is less important than the family's and child's experience of the relationship over time. Even when medical information must be discussed or decisions about medical care are critical, parents and children need the opportunity to raise the issues most important to them. Often the issues important to the team and family are similar, but when they are not, forgoing the family's and child's interests to address the medical issues is rarely productive; instead, a joint agenda should be developed. As with other aspects of communication, this allows the clinician to understand what is most important to the child and family, and also reminds the family that what is important to them is also important to the clinician.
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:
-
Anticipate what they will likely experience secondary to the illness or its treatment, including adversities,
-
Make effective decisions about care,
-
Cope with the clinical and life situations,
-
Have less confusion and anxiety or depression related to both the illness and the treatment,
-
Feel respected by the clinicians,
-
Establish a trusting relationship with the healthcare team,
-
Establish a forum and process for ongoing support, transmission of information, and making decisions.
Additionally, providing children with information about their diseases and treatments meets legal regulations and ethical considerations 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, and promote child participation in treatment decision making. 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.
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. 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. 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 child ( Box 19-1 ).
TABLE 19-1
Guideline Examples Based on Principles of Communication
¶ Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP: SPIKES: A six-step protocol for delivering bad news: application to the patient with cancer, Oncologist 5(4):302-311, 2000.
| 7-step communication tool * | Guidelines for communication of the diagnosis † | Six E's of communication ‡ | Segue § | Pace ‖ | Spikes |
|---|---|---|---|---|---|
|
|
|
|
|
|
* Von Gunten CF, Ferris FD, Emanuel LL: Ensuring competency in end-of-life care, JAMA 284(23):3051-3057, 2000.
† Masera G, Chesler MA, Jankovic M, et.al: SIOP Working Committee on Psychosocial Issues in Pediatric Oncology: Guidelines for communication of the diagnosis, Med Pediatr Oncol 28:382-385, 1997.
‡ Beale EA, Baile WF, Aaron J: Silence is not golden: communicating with children dying from cancer, J Clin Oncol 20(15):3629-3631, 2005.
§ Makoul G: The SEGUE Framework for teaching and assessing communication skills, Patient Educ Couns 45(1):23-34, 2001.
‖ Garwick AW, Patterson J, Bennett FC, Blum RW: Breaking the news: how families first learn about their child's chronic condition, Arch Pediatr Adolesc Med 149(9):991-997, 1995.
BOX 19-1
Principles of Communication with a Seriously Ill Child and the Child's Family
- 1.
The context for communication is the family.
- 2.
Communication is intended to make a human connection with the seriously ill child and family.
- 3.
Each serious discussion requires careful preparation regarding timing, place, who needs to be included in the discussion from the team and family, and adequate time to remain to address lingering questions.
- 4.
Communication is never a one-time interaction, but is ongoing.
- 5.
Clinicians need to be invited to communicate by the ill child.
- 6.
A single mode of communication is most commonly insufficient in pediatric palliative and end-of-life care.
- 7.
All members of the interdisciplinary pediatric palliative care or end-of-life team are integral to communicating effectively with the child and family.
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. 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. However, assumptions about the meaning of culture in a particular family should be avoided. 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. 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.
The second guiding principle is that communication is making a human connection. Literature offers instructions on how to deliver bad news. 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.
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, 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.
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.
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. Other forms of media can also be very helpful in sharing information and feelings between clinicians and children include drawings. 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. 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.
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. 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. 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. 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. 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.
You're Reading a Preview
Become a Clinical Tree membership for Full access and enjoy Unlimited articles
If you are a member. Log in here