SCCM Resource Library-Characteristics of Prognostic Statements During Pediatric Intensive Care Family Conferences

Video Transcription

My name is Divya Gupta, and I'm a Pediatric Critical Care Medicine Fellow at Children's National Hospital. I'm currently in my last year of training.  My research interests focus on improving family-centered care by studying communication between the family and healthcare team. I have no conflicts of interest to disclose.  Today, we will discuss characteristics of prognostic statements during pediatric intensive care family conferences.  Prognosis is a vital component of communication during pediatric intensive care unit family conferences, especially when families are making critical medical decisions.  Prior studies done in hematology-oncology, neonatology, and adult populations have shown that sharing clear and meaningful prognostic information positively impacts parental hope,  satisfaction, and medical decision-making. The current practice of how the healthcare team communicates prognosis in the PICU is unknown.  For effective communication, a prognostic statement must contain a message and a meaning.  Families need to hear the medical information that forecasts the probable course of a disease, as well as understand how this information impacts their child and family.  We cannot expect families to make well-informed critical medical decisions without explaining what the prognosis means for them in the context of what they value.  Not all prognostic statements that we identified in our study had a meaning linked to the message.  In our study, we aimed to identify the frequency of prognostic statements and really determine are there decision-making PICU conferences where prognosis isn't even discussed?  In AIM-2, if a prognostic statement was present, we wanted to characterize it to determine the message and meaning conveyed to the family.  To achieve these aims, we completed a retrospective qualitative study analyzing 72 transcripts from audio-recorded PICU family conferences.  We included conferences that anticipated critical medical decisions, such as initiation, escalation, or withdrawal of a medical intervention.  Family conferences were recorded and transcribed as a part of a separate study from January 2013 to January 2017.  We reviewed transcripts to identify prognostic statements and then performed a thematic content analysis to dissect the message and meaning of each statement.  This table represents the demographic characteristics of patients who were the subject of conversation in the family conferences that we analyzed.  Of the 72 patients, 61% were male with a median age of 42.5 months. The majority of patients were black with a diagnosis in hematology-oncology.  The most common critical medical decision discussed surrounded tracheostomy placement. While most patients were either discharged home or to rehabilitation, 22% died, so we  are talking about our most critically ill patients here. This is why discussing prognosis during these decision-making family conferences is essential.  We cannot possibly expect families to make decisions about whether to take their child home with new medical technology, such as a tracheostomy, without discussing prognosis  and putting it into context of what is important to them. Of the 72 PICU family conferences analyzed, 74% included at least one prognostic statement,  whereas 26% did not discuss prognosis. A total of 112 prognostic statements were identified, of which 40% had a message only and 60% included both a message and a meaning.  The majority of prognostic statements were made by pediatric intensivists. Two statements identified were made by family members to repeat what they had heard from a clinician.  The remainder of statements were made by consultants. It is important to discuss prognosis early in the conversation to develop the framework  for decision-making later, and we found that most prognostic discussions occurred in the beginning of the family conference.  It is also essential to use clear and concise language to communicate the prognostic message and meaning.  We found that on average, clinicians used 86 words per statement at a 12th grade level of language complexity. This is an example of a prognostic statement with a message only.  I do think that he's not going to be like he is now, so when you say recover, he's definitely going to be better than he is right now at some point.  Where the message is highlighted in purple and conveys that the patient will have delayed recovery. This is an example of a prognostic statement with both a message and a meaning.  I don't think he's going to have a meaningful recovery. Where the message in purple conveys no progress in the patient's recovery.  If he were going to have a meaningful recovery, and by meaningful, I mean be able to breathe on his own, be able to walk on his own, be able to talk, be able to take in food on his  own. Where the meaning highlighted in orange conveys the impact that the prognosis will have on the patient's activities of daily living.  This is another example of a prognostic statement with both a message and meaning. I know she's going to be weak because she's been paralyzed and sedated for a long time.  I am optimistic that we are going to get recovery. Where the message highlighted in purple conveys delayed recovery for the patient.  Especially with what I've seen in these three days, and she is going to do really well. I also think that she is going to need the breathing tube for a long period of time.  Where the meaning highlighted in orange conveys that the patient will require prolonged care needs in the hospital as a part of their delayed recovery.  We found that message themes of prognostic statements fell within eight themes. Uncertain recovery, delayed recovery, progressive decline, escalation of support, attributable  complications, no progress, irreversible, and probability of death. The most common theme was uncertain recovery, where clinicians described an unknown disease  course of either improvement, no progress, or decline. While these statements were layered with uncertainty, they still frequently delivered a meaningful prognostic message.  Meanings of prognostic statements fell within six themes. Restoration of health, activities of daily living, additional equipment, prolonged care  needs, brain dysfunction, and death. The most common theme was additional equipment, where clinicians described the impact that  prognosis would have on the need for medical support devices. In summary, we found that components of a prognostic statement included a message and  a meaning with the following themes. All themes fit within one of four categories, including time, function, cure, and death.  There were layers of uncertainty present throughout all themes that were more common in time and function themes and less common in death and cure themes.  Statements with messages in the cure category frequently did not have a meaning associated with them. We caution clinicians on making these prognostic statements in a vacuum.  We also recommend that clinicians communicate prognosis with a meaning linked to the message at all times, and it is okay for there to be components of uncertainty in the statement.  In conclusion, families need prognostic information to make well-informed critical medical decisions.  Clinicians discussed prognosis in the majority of family conferences, yet in 26% of conferences it was not discussed.  Prognostic information needs to be presented in a clear and concise manner with a message and a meaning, even when there is uncertainty.  Of the prognostic statements that clinicians made, 40% of them did not provide a meaning. Providing context is essential for families to understand the prognosis and plan for the  future. I thank you all for listening to my presentation today and give a special thanks to my research team, Drs. Tessie October and Amy Wolf.

Video Summary

In this video, Divya Gupta, a Pediatric Critical Care Medicine Fellow, discusses the importance of prognostic statements during pediatric intensive care family conferences. Prognosis plays a crucial role in helping families make critical medical decisions, but the current practice of communicating prognosis in the PICU is unknown. Gupta conducted a retrospective study analyzing transcripts from 72 family conferences and found that 74% included prognostic statements. However, 40% of these statements lacked a meaningful context. Gupta emphasizes the need for clear and concise communication of prognosis, including both the message and its meaning, to help families understand and make informed decisions.

Asset Subtitle

Patient and Family Support, Pediatrics, 2022

Asset Caption

INTRODUCTION/HYPOTHESIS: Discussion of prognosis is a vital component of communication during pediatric intensive care unit (PICU) family conferences when medical decision-making is anticipated. Prior studies demonstrate that sharing clear, meaningful prognostic information positively impacts parental hope, satisfaction, and medical decision-making. For effective communication, the prognosis statement must contain a message, defined as a forecasting of the probable course of a disease, and a meaning, which delineates the impact of the disease on the patient and/or family. The current practice of how the healthcare team communicates prognosis to parents of critically ill children in the PICU is unknown. We evaluated the frequency and characteristics of prognostic statements made by the healthcare team during PICU decision-making family conferences. METHODS: We conducted a retrospective, qualitative study analyzing transcripts of audio-recorded PICU family conferences where critical decision-making was anticipated. Descriptive, thematic content analysis was applied to the transcripts to identify 1) the presence of prognostic statements and 2) the message and meaning of the prognostic statements. RESULTS: Seventy-two transcripts were analyzed, of which 53 (74%) included at least one prognostic statement. Clinicians made a total of 112 prognostic statements, of which 66 (59%) included both a message and a meaning, such as “your child’s lungs are worsening (message) and extubation will be unsuccessful (meaning).” Conversely, 46/112 (41%) statements included a message only, such as “your child’s lungs are worsening.” Messages fell into 4 themes: Time (fast vs. slow recovery), Disability (need for medical technology), Cure (reversibility of disease), and Additional disease (brain injury will lead to respiratory problems). CONCLUSIONS: Prognosis was discussed in the majority of family conferences of critical decision-making in the PICU, yet clinicians didn’t discuss prognosis 26% of the time. When prognosis was discussed, 41% of the time clinicians struggled to provide meaning to families regarding how this life-altering news may impact the patient and family. Providing context to the prognosis is essential for families to understand the prognosis and plan for the future.

Meta Tag

Content Type Presentation

Knowledge Area Patient and Family Support

Knowledge Area Pediatrics

Knowledge Level Intermediate

Knowledge Level Advanced

Membership Level Select

Tag Medical Legal Issues

Tag Pediatrics

Tag Palliative Care

Tag Communication

Year 2022

Keywords

Divya Gupta

Pediatric Critical Care Medicine Fellow

prognostic statements

pediatric intensive care family conferences

prognosis communication

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