The majority of parents interviewed wanted to provide feedback on the quality of physician-parent interactions near the time of their child’s death in the PICU. Our findings show that parents want physicians to be accessible and to provide honest and complete information with a caring tone, using lay language, and at a pace in accordance with their ability to comprehend. Ignoring parents or withholding prognostic information from them may lead to false hope and a sense of anger, betrayal, and distrust among parents. A central tenet of physician-parent communication is that parents need information to make treatment decisions for their child. Parents of critically ill children are often faced with serious decisions, including whether life support for their child should be initiated, continued, limited, or withdrawn (20
). Effective physician-parent communication is necessary to impart information, improve understanding, reduce conflicts, and implement a management plan that is in the best interest of the child. Understanding parents’ perspectives of their communication experiences can help physicians communicate with greater sensitivity and confidence and reduce physicians’ discomfort with and avoidance of difficult conversations. Our findings can also be used to tailor existing guidelines for the effective communication of bad news in the PICU setting.
Published communication guidelines assume that the interactions between physicians, patients, and families occur in a linear fashion with information regarding diagnosis, prognosis, treatment, and complications discussed sequentially (1
). Guidelines also suggest that each interaction is composed of three chronologic phases. First, physicians must prepare for the interaction in which bad news will be given. Strategies for preparing include ensuring adequate time and a private space and eliciting from the patient or family members their current knowledge of the patient’s condition. Second, physicians must disclose the information. Strategies for adequate disclosure include using lay language, providing discrete pieces of information, allowing the patient or family members to set the pace, and probing to assess their comprehension. Third, physicians must allow time for and respond to the patient or family members’ emotions, answer questions, summarize the information provided, and identify what will happen next.
While these guidelines provide a useful framework for discussing bad news with patients and families, they need to be adapted to the PICU setting. The assumption that bad news unfolds in a lengthy chronologic process may not apply in the PICU, where illnesses are life-threatening and events occur rapidly. Despite this added complexity, our findings suggest that parents want full disclosure of information at a pace in accordance with their ability to comprehend. This seeming contradiction might best be resolved by keeping parents informed through frequent, short conversations with the physician or their designee. For example, while cardiopulmonary resuscitation is being performed on a child, physicians might break away to meet family members, send a designee to provide frequent updates and emotional support, or allow parents to be present at the bedside. These approaches may prevent the feelings of isolation, abandonment, and distrust that were reported by parents in this study. Additionally, frequent updates may prevent physicians from having to provide a complex cluster of bad news all at once. Often, news of a child’s death must be coupled with a request for organ donation or autopsy. In such cases, our findings suggest that physicians should provide empathic support and at least a few moments for parents to grasp the bad news before such requests are made.
Parents in this study stressed that they wanted an honest and comprehensive disclosure of the physician’s formulated prognosis and wanted it provided in a caring tone. Much research exists on formulating and disclosing prognoses at the end of life, especially in the field of oncology (1
). Research suggests that while formulating a prognosis can be difficult, equally difficult is communicating that prognosis to the patient and family. A recent meta-analysis concluded that physicians consistently overestimate survival of adult cancer patients (24
). In another study, physicians reported that they would not communicate any survival estimate to their adult cancer patients or would communicate an estimate different from the one they formulated almost two thirds of the time (27
). In pediatric oncology, Wolfe et al. (28
) reported a >3-month gap between the time the physician recognized the child had no realistic chance of cure and the time the parents recognized the same. The authors suggested that the reason for this gap may be two-fold; physicians may not communicate clearly, and parents may not fully acknowledge their child’s prognosis even when told. In pediatric critical care, similar physician and parent factors are likely to underlie parents’ awareness and understanding of their child’s expected outcomes. Nevertheless, parents’ understanding of prognosis is extremely important to facilitate informed treatment decisions for their child.
Foundational to this study was the researchers’ desire to report the parents’ own versions of their communication experiences and to accept them as valid in their own right. The findings represent the parents’ versions of reality based on their perceptions and lived experiences rather than absolute truths judged by external means. Undoubtedly, the physicians involved in these interactions have their own views, as do the researchers generating this report and its readers. As well-meaning physicians, it may be difficult for us to accept that the parents participating in this study were “telling the truth” about the negative aspects of their interactions with physicians. However, by acknowledging that parents’ perceptions may be different from our own, we can begin to discover ways to modify our behaviors in order to communicate with parents more effectively. Caution must be taken with this approach, however, because parents’ perceptions and desires expressed after their child’s death, as in this study, may or may not relate to their actual needs at the time of the death. Parents are often angry after their child’s death; anger and blame directed at others may be a form of unresolved grief.
Similarly, parents’ desire for prognostic information should not be construed to mean that physicians should make hasty judgments about a child’s expected outcome. In the scenario described previously, in which a parent perceived that two physicians rotating on and off service provided her with different prognoses and recommendations regarding withdrawal of life support for her child, it is unknown which physicians’ assessment was most correct. What can be learned from the scenario is that the breakdown in communication between physicians and the way that information was subsequently provided to the parent eroded her sense of confidence that her child had received optimal care. Sixty percent of the children who died in this study had life support limited or withdrawn. Presumably, the physicians caring for these children had in-depth conversations with parents about their child’s expected duration and quality of life before such decisions were made.
Limitations of this study include the large number of parents who could not be contacted and the predominance of mothers among participants. Parents were not specifically asked to provide feedback on communication with the PICU physician. Reliance on parents’ spontaneous disclosures rather than solicited responses to explicit interview questions may bias the study findings because the views of parents who did not volunteer such disclosures are not known. The percentage of parents commenting on communication issues varied by site; this may reflect differences in interviewer style and degree of probing parents’ responses. This study includes only bereaved parents; it is plausible that the views of parents who are not bereaved may be different. Future research will need to include in-depth interviews on this topic to gain more insights from parents followed by large-scale surveys to assess the extent to which the results of this study are generalizable. This study also does not address the important issue of communicating bad news to pediatric patients or their siblings. Strengths of this study include the multicenter design, racial and ethnic diversity of participants, and the open-ended interview format that allowed the spontaneous discussion of communication issues.