The provision of written information to read and review independently and to reference, as needed (e.g., a summary of information discussed with the medical team, medication teaching sheets, published research papers)
The presence of a specific family member, close family friend, or spiritual or religious representative
That meetings be held in a specific location, such as a private conference room, as opposed to a shared clinic space or exam room
The inclusion of as few clinicians as possible in conversations, which may feel less intimidating or overwhelming than the inclusion of multiple clinicians from the oncology service and perhaps consulting services.
Team-Family Meetings
At any point after the initiation of care, if any member of the multidisciplinary team has a sense that communication may be especially challenging due to patient or caregiver distress, consideration of regularly scheduled team-family meetings may be warranted. The specific purpose, timing, and composition of such meetings can be individualized, but the general goal of a team-family meeting is to provide a scheduled opportunity to review relevant information, to preview upcoming treatment needs and potential interventions, and to address any clinician or family concerns. Such meetings have been shown to be effective in facilitating discussions in the context of intensive care admissions and end-of-life decision-making (Marik et al. 2009; Nelson et al. 2009; Radwany et al. 2009), and such principles can be applied to improving communication at any point in the treatment course.
The nature and structure of the discussion may be similar to that of a routine medical visit, but the distinction as a separate meeting can be valuable in that (1) teams can meet separately prior to the meeting to ensure all providers are on the same page and invite relevant multidisciplinary clinicians and/or consulting services to attend, if appropriate, (2) family members can prepare questions and discussion points in advance that clinicians may not have time to address during routine appointments, and (3) it provides an opportunity to repeat, reinforce, or clarify important information that was presented during routine visits, which can be particularly helpful for patients and caregivers whose distress may in some form interfere with the reception, retention, or understanding of important medical information.
Communication Skills
In addition to such preventive methods, the effective and consistent implementation of the basic communication skills described earlier in this chapter is particularly important during interactions with distressed patients or caregivers.
Utilize Active Listening Skills
During challenging exchanges, active listening, acknowledging emotions, and expressing empathy are essential. In addition, maintaining a nonjudgmental approach and validating a family’s experience can help clinicians navigate such interactions in a manner that fosters a positive working relationship. Among adult patients, adopting a warm, empathic, emotionally supportive approach has been associated with reduced anxiety and distress, as well as improved recall of medical information (van Osch et al. 2014); this approach is likely to be helpful when interacting with caregivers and patients in pediatric settings, as well.
Flexibly Maintain Structure
Core components of an effective clinical conversation include establishing the purpose of the conversation, eliciting patient and/or caregiver preferences and involvement in decision-making, reviewing options and recommendations, acknowledging patient/caregiver emotions, and eliciting patient and/or caregiver comprehension. The trajectory of conversations with individuals expressing strong negative emotion may be somewhat unpredictable, so remaining mindful of the key aspects of the interaction while maintaining flexibility will likely result in a more successful and satisfactory exchange from the perspective of both the clinician and the patient/caregiver.
Affective and Cognitive Strategies for Clinicians
It is important to acknowledge that the experience of communicating with individuals in distress, whether they are sad, angry, or anxious, naturally elicits emotional reactions in clinicians. After all, communication is a dynamic process. Therefore, when communicating with individuals in distress, depending on the type and intensity of their emotional response, it may be experienced by clinicians as sad, uncomfortable, awkward, frustrating, or even offensive. In order to utilize the communication strategies described above in a genuine and consistent manner, and to remain nondefensive and fully present and available to offer one’s clinical expertise, it is helpful for clinicians to remain cognizant of their internal affective and cognitive experience. A clinician’s emotional and cognitive experience may be reflected in verbal and nonverbal expressions and, therefore, may have a significant impact on the ongoing communication process. Clinicians benefit from acknowledging feelings, judgments, and assumptions made about patients and caregivers, especially those that fail to foster productive, patient-centered, mutually respectful communication.
If negative feelings or cognitions are identified, the use of internal statements by clinicians may be helpful in minimizing the extent to which such internal experiences interfere with the genuine expression of empathy. For example, when interacting with a frustrated caregiver who is raising her voice, speaking over the clinician, and ruminating on past events that have been discussed repeatedly over the course of many days, a clinician may feel equally frustrated, defeated, or angry. If the clinician is able to recognize those feelings in the moment, she will be much better prepared to redirect or channel them in a productive way. They may serve as cues to use internal statements that recognize the nature of the family’s experience or positive intentions, qualities, or abilities, such as the following: “This mother is petrified that her child is going to die,” “This mother is doing the very best that she can,” or “This family’s life has been devastated by their child’s diagnosis.” Individualized internal statements may help clinicians empathize with families during the most interpersonally challenging moments. In doing so, a clinician may be more likely to maintain a family-centered perspective, to use active listening skills, and to navigate the conversation toward a collaborative end, as opposed to further escalating a vulnerable patient or caregiver.
Practical Interventions
There are a number of very practical interventions that can be containing and reassuring to patients and families in distress, as well as effective for clinicians and staff.
Ensure Safety
Distress is expected and is completely understandable for patients and family members affected by a cancer diagnosis. While that is always true, safety of patients and staff must always be a top priority. Therefore, if expressions of anxiety, anger, or sadness, on the part of a patient or family member ever pose a physical threat or are interpreted as aggressive or disruptive to patients or staff, steps must be taken immediately to de-escalate the individual and to prevent such events from occurring in the future. At the first sign of potential escalation during conversations with clinical staff, it is helpful to clearly and firmly communicate hospital policies and the rationale for such policies, namely, protecting patients and staff. Ideally, clinicians would be able to do so in a gentle, empathic manner, but boundaries around safety must always be maintained and respected. Joining with the family around a mutual responsibility and shared interest in safety and the provision of high-quality clinical care, above all else, may help in navigating situations in which hospital or clinic policies are referenced and reinforced. A discussion of decision-making around issues of child protection is beyond the scope of this chapter, but would also be highly relevant in circumstances of this nature if child abuse or neglect is suspected or observed by clinical staff.
Psychosocial Referral
As patient or caregiver distress may present at any point along a patient’s treatment trajectory, access to specialized psychosocial assessment and intervention services is crucial both for families and medical teams. Mental health clinicians who are well integrated and familiar with both administrative and clinical personnel on medical teams will be best suited to address clinical issues in a timely, thorough, and well-informed manner. When providing psychosocial services to patients and families in this context, particularly those exhibiting significant emotional or behavioral distress, it is essential to have a solid understanding of the medical factors at play, as well as knowledge and experience navigating the complex medical systems within which the family and medical teams are operating. Interventions often involve engaging multiple team members and mobilizing hospital-based supports. Mental health clinicians who are easily accessible, available to meet with patients and families throughout their course of treatment, and who have established collaborative relationships with medical providers will be best equipped to effectively and efficiently meet the mental health needs of the pediatric oncology population.
Lessons from the Case Vignette about Charlie
Charlie, the 13-year-old boy with Ewing sarcoma, whose parents did not want anyone to discuss his care needs with him, demonstrates a situation in which the medical team, the parents, and the patient are not on the same page. The following clinical recommendations may be helpful in situations similar to this:
Early involvement and inclusion of a psychosocial provider on the clinical team
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