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A Woman in Her 30s Whose Family Becomes Distrustful After an Initial Prognosis Proves Inaccurate FREE TO VIEW

J.S. Blumenthal-Barby, PhD; Christos Lazaridis, MD
Author and Funding Information

CORRESPONDENCE TO: J. S. Blumenthal-Barbay, PhD, Baylor College of Medicine, One Baylor Plaza, Houston, TX 77030

Copyright 2016, American College of Chest Physicians. All Rights Reserved.

Chest. 2016;149(4):e115-e117. doi:10.1016/j.chest.2015.09.021
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A woman in her 30s with alcoholic liver disease presented with an intracerebral hemorrhage with intraventricular extension, hydrocephalus, and an intracerebral hemorrhage score of 3. In the ICU, she was comatose with a flexion withdrawal as a best motor response. The ICU team, after 6 days of care, informed the family that the prognosis for any recovery of meaningful neurological function was dismal and that the family should consider withdrawal of life support. The family resisted any consideration of limitation of care, citing religious beliefs.

After 2 weeks of mechanical ventilation, the patient improved, becoming oriented to self and place, was liberated from the ventilator, and was able to follow commands, although she had a residual left hemiplegia. Brain imaging studies demonstrated an arteriovenous malformation as the source of the intracerebral hemorrhage. Before she could undergo an embolization procedure, the patient suffered a second massive intracerebral hemorrhage with herniation, prompting an emergency decompressive craniectomy and excision of the arteriovenous malformation that left her in coma with a Glasgow Coma Scale of 5T (E1V1tM3). The family recoiled at recommendations to consider withdrawal of life support and stated their distrust of physicians because of the initially incorrect prognosis the family received. They would only discuss continuation of full life support and the patient’s prospects for full recovery and rehabilitation.

Question: After the initial evaluation, how could the ICU team have communicated in a more balanced manner the uncertainty of the prognosis and the full range of optimistic and pessimistic possible outcomes? How might the ICU team regain the trust of the family?

Answer: Validated methods for communicating uncertain prognoses exist that promote shared decision-making and foster trust between the ICU team and family surrogates.

For patients without decision-making capacity, the ethics of communication center on assisting surrogate decision-makers to make informed decisions about medically reasonable treatment alternatives. These decisions should derive from (1) what surrogates believe the patient would have wanted (ie, substituted judgment) or (2) what they believe meets the patient’s best interests if the patient’s prior preferences are unknown. To be truly informed, surrogates must receive and understand the most accurate information available about the patient’s prognosis, the proposed interventions and their associated risks and benefits, and the risks and benefits of delaying or declining proposed interventions. When the prognosis is uncertain, physicians must communicate the nature and degree of this uncertainty to surrogates.

All too often, prognosis is uncertain in the ICU, and several studies of prognostication in general and neurocritical care have found that physicians overestimate poor outcomes and underestimate good outcomes, especially early in the course. It has also been reported that families of critically ill patients often express doubt about the ability of physicians to prognosticate accurately. Therefore, ICU teams must perfect their communication skills for conveying this uncertainty to family members. It is important for ICU teams to identify the type and source of uncertainty. Scientific uncertainty refers to uncertainty about the diagnosis, prognosis, causal explanation of disease, or treatment recommendations. Practical uncertainty refers to patients’ uncertainty about structures or processes of care such as how to identify or access a health-care provider. Personal uncertainty refers to patients’ uncertainty about the psychosocial or existential effects of the treatment options.

In the ICU, scientific uncertainty about prognosis represents the most common type of uncertainty that complicates communications between providers and families. In managing this form of uncertainty, it is important to discern the source of that uncertainty. For instance, one source is probability (eg, a 30% chance of recovery), which inherently generates uncertainty. A second source is ambiguity, which arises from imprecision in probability (eg, 30%-70% chance of recovery), expert disagreement/conflicting opinion, or lack of scientific evidence/information. A third common source is complexity, in which multiple causal factors operate in a case, leading to uncertainty about outcome or prognosis. In some instances, identifying the source of uncertainty may aid in resolving it. For instance, if uncertainty derives from differences in expert opinions, informing families that two experts would disagree and describing their different perspectives and opinions helps to inform families. Moreover, when providers openly express the limits of knowledge and the various sources of uncertainty, the conversation itself engenders trust, transparency, and a greater ability for the family to understand the prognosis and allow them to engage in decision-making.

Communication tools have been developed for use in the ICU that may improve communication and care in cases of clinical uncertainty. One such tool is the Psychosocial Assessment and Communication Evaluation (PACE). This tool (initiated 24-48 h after admission) serves as a template for assessment of each patient in the domains of key relationships, social details and needs, patient preferences, communication and information status, and other concerns. It also contains a log for recording ongoing communication with the family. Tested in two ICUs, completion of the PACE tool improved patients’ satisfaction with symptom control and with the honesty and consistency of the information provided to them by the ICU team. Also, these benefits persist with improved interactions, communication, and perceptions of provider honesty days to weeks later when patients and families face even more difficult conversations and decisions. A second tool for communicating uncertainty in a way that is realistic but maintains hope (giving the full range of optimistic and pessimistic possible outcomes) is the “best case, worst case, typical or most likely case” approach. This approach informs patients and families about estimates of the best case (best 10%), worst case (worst 10%), and typical (middle 50%) regarding survival or recovery.

Even with the best attempts to handle and effectively communicate about issues of uncertainty, cases of distrust may arise. Clinicians face considerable challenges in retaining or regaining family trust after clinical events prove an initial prognosis to be inaccurate. In the absence of empirical evidence on this important issue, we suggest a few pragmatic steps that clinical teams could undertake. The first step ought to be an honest and empathetic assessment of the initial prognostication. Taking responsibility and accepting possible mistakes can bridge some of the gap between the clinical team and family members. On the contrary, denial or open confrontation can seriously endanger further communication. Second, maintaining frequent and understanding interactions with families that involve patience and listening may be helpful. Clinicians should emphasize that it is the patient’s best interests at the center of their care; these best interests can only be protected via mutual trust, a foundational component for effective ICU care and safeguarding patients. Additional steps to consider include offering opportunities for a second opinion, inviting a trusted third party (eg, chaplaincy, ethics) to join the conversations, or asking an experienced colleague to sit in on the family discussions to reflect back to the team deficiencies in how they communicate.

Clinical Course

The ICU team held multiple family meetings and communicated a poor prognosis with probable outcomes of a vegetative or minimally conscious state. The family argued that they were given a falsely pessimistic prognosis early on and that in addition to their religious beliefs, had no interest in discussing anything other than full support and prospects for rehabilitation. Clinical support was continued, including placements of a tracheostomy and a percutaneous endoscopic gastrostomy. The family was further supported via the ethics consultation service and clergy. The clinical and support teams regained the family’s trust by reassuring the family of their dedication to the patient’s best interests and by explaining that scientific uncertainty often leads clinicians to make difficult, potentially flawed, prognostications as they aim to balance projections for chances of versus quality of survival. A neurologic examination 174 days after admission was suggestive of minimally conscious state. The patient was discharged to a long-term care facility 193 days after hospitalization.

  • 1.

    Families, as surrogate decision-makers for incapacitated patients, convey what the patient would have wanted under similar circumstances (ie, substituted judgment) or what they believe is in the best interests of the patient.

  • 2.

    The ICU team should communicate the degree of uncertainty inherent in the prognosis they provide using a framework that families can understand, such as the “best case, worst case, most typical case” approach.

  • 3.

    Tools such as the Psychosocial Assessment and Communication Evaluation exist to enhance communication with families in the ICU during clinical uncertainty.

  • 4.

    Families benefit from learning whether the type of uncertainty is scientific, practical, or personal uncertainty and whether the source of uncertainty is probability, imprecision in the estimates of the probability, or the complexity of interacting conditions and disease states.

  • 5.

    Multiple approaches exist to regain family trust after an inaccurate prognosis, foremost of which is maintaining frequent and understanding interactions that involve patience and listening; involving a third party such as ethics or clergy; and reassurance that the providers were dedicated to the patient’s best interests.

Financial/nonfinancial disclosures: None declared.

Other contributions:CHEST worked with the authors to ensure that the Journal policies on patient consent to report information were met.




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