Prognostic Communication: Closing the Gap Between Parental Preference and Provider Practice

Provider-Level Challenges

Providers understandably find it challenging to initiate difficult conversations. Sharing serious news is emotionally laden, especially if the provider has built a close relationship with the patient and family. In fact, the longer a physician knows a patient, the more likely the doctor is to erroneously predict their survival. ⁸ Clinicians may also wish to protect their patients from difficult information and in the process delay necessary conversations. While this desire is intended to be protective, accurate prognostic information is necessary for patients/families to make decisions and prepare for the future. Superdock et al. share the words of one parent: “What matters most is [that] the information is told, and it’s told in enough time so where their family can make a decision, and it’s the truth. Now, don’t sugarcoat it.”

Another barrier to optimal prognostic communication is difficulty in clearly and accurately conveying prognosis severity. Providers may soften the language they use, diminishing the clarity or accuracy of the message. For example, adult oncologists describe their reluctance to disclose prognosis through metaphors depicting their perceived violent impact of such information on their patients. ⁹ As a result, oncologists, who endeavor to protect the health and well-being of their patients, may use (intentionally or unintentionally) language that is vague or softened in other ways when discussing prognosis, ⁵ despite evidence that parents value transparency and honesty. Softened language (e.g., using euphemisms) or other suboptimal strategies such as relying on jargon or statistics, or a lack of clear headline at the beginning of the conversation may also obfuscate the main message. As a result, patients/families may be left unintentionally misled or confused.

Providers often delay or soften prognostic communication out of fear that it will extinguish patient/family hope. On the contrary, evidence affirms that parents of children with cancer maintain hope even when accurately acknowledging the severity of illness.^10,11 In fact, timely and accurate communication is essential to preserving hope. According to a parent quoted in Superdock et al., honest physician communication is important in supporting hope: “I can’t have hope for something that you’re not being truthful with me about.”

Provider approach to prognostic communication must also be individualized and adaptable, taking into account each patient’s/family’s needs and preferences. One family might prefer to know every lab value and its meaning; another family might find this amount of information overwhelming and instead prefer to hear solely the “big picture.” Parents differ on whether they prefer their child to be present for prognostic discussions. Though families might differ in specific preferences, bereaved parents in the Superdock study agreed that providers should ask families about their preferences and adjust their communication style accordingly. Providers can take the initial step of asking about family communication preferences early in their clinical relationship, in hopes of understanding these preferences for future information sharing.

Additionally, providers may encounter patients/families who are reluctant to engage in conversations about prognosis. In such situations, it can be easier for a provider to take the patient/family response at face value and avoid such conversations. Instead, providers should “lean into” patient/family reluctance by unpacking their reluctance, exploring their fears and concerns, and delineating what might be supportive to them when they imagine having such a conversation.

Finally, it is important to acknowledge that communication is a learned skill. Like any skill, effective communication is developed over time through practice, education, and experience. Current approaches to teaching prognostic communication in residency and subspecialty training programs are largely informal, variable, and rely heavily on role modeling. ¹² The same is true for practicing providers. Improving prognostic communication requires implementation of evidence-based and standardized training for learners and providers. For example, it might be helpful for the Accreditation Council for Graduate Medical Education to consider guidelines for communications training for future residents and fellows.

The Challenge of Prognostic Uncertainty

In the absence of a “crystal ball” enabling providers to definitively prognosticate, they may shy away from discussing an uncertain future with patients/families. In instances of high uncertainty, when medical complexity is high and little data to guide prognostication exist, providers may forgo their responsibility of providing prognostic information, deferring this until the course is more certain. Providers may also fear providing incorrect information and similarly relinquish their role in discussing prognosis. In either case, conversations may not occur until the outcome is clear, which is often too late in the course for patients/families to plan or prepare.

In both situations, the first step toward timely and effective prognostic communication is awareness of how necessary effective prognostic communication is for patients/families, even in the absence of certainty. They trust providers to impart this as part of the care they provide. Second, providers must realize that in any circumstance, they have the ability to provide a range of most likely answers. It might be helpful in this instance to, rather than sharing a precise but potentially wrong answer, frame the conversation by outlining a best-case scenario, a worst-case scenario, and the most likely scenario. Third, providers usually consider prognosis in terms of numbers (e.g., likelihood or time); they should expand their approach to prognostication. For many families, what the future may look like (e.g., in terms of function, available resources or supports, or potential locations of care) is as if not more important to know, especially when time is short. The type of prognostic information a patient/family most values can easily be determined by asking about their communication preferences prior to discussing prognosis.

Systems-Level Challenges

In addition to clinician-related factors, systems-level challenges to optimal prognostic communication exist. Ever-increasing complexity of care teams may complicate coordinated and effective prognostic communication. In complicated medical situations, multiple providers contribute to the formulation of prognosis, and clear and timely communication can be complicated. For example, delivery of information can be delayed when there are multiple key providers who disagree about prognosis, and they must come together to align views. In some instances, key clinicians share their impressions via email, often to subgroups of the care team, making it difficult for anyone to know who is driving prognostication, much less what their conclusion is. Such opaque communication among team members naturally leads to patient/family confusion. An effective solution to this is the team–family meeting. Arranging such a meeting requires resources to coordinate the schedules of busy clinicians and family members and to attend to other logistical issues. It also requires the willingness of participating clinicians to work this commitment into their likely busy schedule.

In some instances, several key providers may continue to work in parallel rather than alongside other providers when discussing prognosis. In this situation, patients and their families are at risk for receiving multiple dyssynchronous and oftentimes differing messages. For this reason, it is important to consider team–family meetings. These should include “premeets” just before the meetings to review clinical information and perspectives and to consolidate the prognostic “headline.” This ensures that all team members are aligned when communicating prognosis, thereby maximizing clarity of the message shared with the patient/family. In many ways this, “premeet” is analogous to a universal “time out” required before any surgical intervention. ¹³

Time may also be a limiting factor for prognosis communication. Patients and families should be allowed as much time as they deem necessary to process the information, ask questions, and delineate next steps with the provider. In the busy inpatient setting or the bustling clinic, time is often cut short. Patients and families benefit from ongoing longitudinal prognostic discussions, which can also prove challenging when time is limited. While some restructuring of the U.S. Center for Medicare and Medicaid Services billing codes has facilitated billing pertaining to advance care planning and prolonged billing, these changes still do not reimburse providers for team–family meetings as procedures comparable to surgical procedures.

In addition, considerations such as accommodations conducive to meaningful conversations may limit effective prognosis communication. When space is a scarce resource, quiet, private places with suitable furnishings for important discussions may be limited. For example, seating that allows for eye-level communication is known to be associated with higher quality communication (e.g., greater checking for understanding) ¹⁴ and higher patient ratings of communication. ¹⁵ The absence of these may reflect inadequate organizational resources or a lack of awareness of their importance in facilitating serious conversations. Lack of available accommodations can also send an unintended but very real message that serious conversations with patients and families are not in and of themselves procedures of high value and importance.

The presence of an interdisciplinary team, including psychosocial clinicians, can enhance prognostic discussions in many ways. For example, they have a particular skill in attending to emotion, supporting the patient/family while simultaneously increasing the effectiveness of provider communication. They can also play a key role in checking for patient/family understanding, elevating the voice of patient/family questions, and supporting family processing of information after the fact. Parents interviewed by Superdock et al. found the presence of psychosocial clinicians helpful during difficult conversations. However, the availability of psychosocial clinicians and other interdisciplinary team members often falls far short of the need for their support. These findings suggest that advocating for psychosocial support during difficult conversations is an important step in optimizing prognosis sharing. We also acknowledge the importance of ensuring families who speak languages other than English receive prognostic disclosure, in partnership with professional medical interpreters, that meets their linguistic and cultural needs.

Conclusion

The article by Superdock and colleagues demonstrates that families of children with advanced cancer prefer early and honest prognostic communication, further strengthening the armamentarium of evidence that prognosis communication by providers falls short of patient/family needs. Despite this abundant evidence that current prognosis disclosure practices lead to unmet communication needs and likely suboptimal serious illness outcomes, we have provided reasons for this unmet need based on clinical experience. However, investigative inquiry must now move forward to unearth the full array of reasons for this phenomenon from the perspectives of health care professionals and administrators, communication scientists, sociologists, and many others. Only then will we be fully equipped to devise interventions to fill the gap between demonstrated need and high-quality provider prognostic communication.