By Elaine Chen, MD
Assistant Professor, Department of Internal Medicine, Division of Pulmonary and Critical Care Medicine, Section of Palliative Medicine, Rush University Medical Center, Chicago
Dr. Chen reports no financial relationships relevant to this field of study.
SYNOPSIS: Qualitative analysis of audio-recorded structured meetings for patients with chronic critical illness revealed six categories of responses that clinicians can use to guide communication.
SOURCE: Nelson JE, Hanson LC, Keller KL, et al. The voice of surrogate decision makers: Family responses to prognostic information in chronic critical illness. Am J Respir Crit Care Med 2017 Apr 7. doi: 10.1164/rccm.201701-0201OC. [Epub ahead of print].
Chronic critical illness is characterized by prolonged ventilator dependence, weakness, and malnutrition, among other symptoms. Patients experience a high one-year mortality rate, and the care burden for families is heavy.
Because of the complexities of illness, prognosis is extremely difficult to predict and even more difficult to communicate to families, who may lack information and understanding about prognosis for their loved ones with chronic critical illness because of a variety of factors.
This study was within the framework of a large, multisite clinical trial aimed to improve communication and decision-making for patients with chronic critical illness and their families. Qualitative analysis was used to evaluate family responses to palliative care discussions about the nature and prognosis of chronic critical illness to improve the approach to communication with these families.
Eligible patients were in a medical ICU having received mechanical ventilation for at least seven days and expected to neither liberate nor die within the next three days. The primary surrogate and any other available decision-makers were recruited. They were given a brochure about chronic critical illness, and a supportive information team (SIT) led meetings to provide information and emotional support within a goal-directed decision-making framework. Two meetings were scheduled as part of the study, with additional meetings held at the request of the family or clinicians. Meetings were audio-recorded, transcribed verbatim, and analyzed using a grounded theory approach. An analytic coding framework was developed, and all meetings were coded by at least two coders. Of 74 eligible patients, consent was obtained for 59 patients (with 76 surrogates). Sixty-six meetings for 43 patients with 51 surrogates were recorded.
Surrogate responses were grouped into six main categories. Individual surrogates often responded with diverse categories within the same meeting, and each category was represented in at least half of the meetings. The categories were:
- Receptivity: Many surrogates were open and receptive to information.
- Deflection/rejection: Families often invoked religion, expressed distrust of the ICU team, considered discussions of expected outcomes to be premature, characterized patients with unusual strength, or even directly rejected biomedical evidence/statistics.
- Emotion: Anger, sadness, grief, crying, “strained” humor when hearing distressing news, and silence implying a delayed response due to strong emotional effect were among emotions expressed.
- Characterization of patient: Families spoke of attributes, accomplishments, or aspirations that characterized the patient as a person, with a broader, deeper sense of personhood. They often looked back to life before illness and described the patient in terms of relationships to others.
- Consideration of surrogate role: Concern regarding the role of the surrogate was expressed frequently, including burden and weariness. Surrogates struggled with a sense that their decisions would determine the patient’s outcome, leading to guilt. Others expressed concern for suffering of the patient.
- Mobilization of support: Sources of support included family and friends, members of the ICU team, and religious faith and community members.
The authors noted that this study offers a new window into surrogates’ responses to family meetings. Prior qualitative studies of ICU family meetings focused on critical care physicians’ communication, whereas this study illuminated patterns of responses by surrogates. Individual surrogates often respond in multiple ways that may reinforce their capacity to integrate and act on information or reflect ambivalence and internal conflict that complicate their decision-making role.
Recognition of the themes that tend to manifest in surrogates’ responses can help guide educators, investigators, and clinicians toward communication approaches that are most likely to achieve goals of meeting surrogates’ needs.
The authors noted that explicit expressions of empathy can help surrogates better absorb and act on information, and that surrogates’ distinctive psychology, as well as relationships with the patient, family members, and healthcare team, can influence how they make decisions.
COMMENTARY
Communication about prognosis represents an important part of a critical care clinician’s role. A prior study, whose authors included two of the authors of this study, described clinical variables that can identify those at highest risk of death from prolonged ventilation.1 However, those data may be difficult for clinicians to translate into prognostic predictions that are easily understood or accepted by affected families.
The authors of this study represent seven diverse institutions with extreme breadth of background and include prominent authors of much of the literature about chronic critical illness.2,3 Their conclusions align with prior research on palliative care and communication, emphasizing the importance of allowing families to speak while clinicians listen carefully and empathetically.
How, then, does communication about chronic critical illness differ from communication about other types of patients? Take, for example, critically ill patients who are not expected to survive despite the critical care clinicians’ best efforts. There is less ambiguity and ambivalence about prognosis, and the clinician can focus on empathy and responding to emotion.
Conversely, for palliative care decision-making in the outpatient setting, particularly in chronic progressive disease, there are many more available opportunities to prepare patients and surrogates for possible outcomes and to respond to their emotions and concerns.
Critical care clinicians who face chronic critical illness more than other clinicians must learn not only to accurately predict prognosis but also to convey it in language that surrogates can understand and respond to appropriately. When preparing for family discussions about chronic critical illness, clinicians should be aware of the themes identified in this study.
By understanding the perspectives of the surrogates, clinicians can better prepare responses to these issues, thus improving communication and decreasing conflict.
REFERENCES
- Carson SS, Garrett J, Hanson LC, et al. A prognostic model for one-year mortality in patients requiring prolonged mechanical ventilation. Crit Care Med 2008;36:2061-2069.
- Nelson JE, Mercado AF, Camhi SL, et al. Communication about chronic critical illness. Arch Int Med 2007;167:2509-2515.
- Nelson JE, Cox CE, Hope AA, Carson SS. Chronic critical illness. Am J Respir Crit Care Med 2010;182:446-454.
Qualitative analysis of audio-recorded structured meetings for patients with chronic critical illness revealed six categories of responses that clinicians can use to guide communication.
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