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Prognostic Uncertainty in Critically Ill Patients with Traumatic Brain Injury: A Multicenter Qualitative Study

An Invited Commentary to this article was published on 02 June 2021

Abstract

Background

Prognostic uncertainty is frequently cited as a barrier to communication between physicians and patients and is particularly burdensome for surrogate decision-makers, who must make choices on behalf of their incapacitated family members. The Conceptual Taxonomy of Uncertainty is one model through which physician and surrogate communication can be analyzed to identify strategies for reducing uncertainty in surrogate decision-making. Our objective was to examine themes of uncertainty in physician communication of prognosis and surrogate goals-of-care decision-making for critically ill patients with traumatic brain injury (TBI).

Methods

We performed a secondary analysis of a previous qualitative study that involved semistructured interviews of 16 surrogates of critically ill patients with TBI from two level 1 trauma centers and 20 TBI expert physicians from seven trauma centers. Open-ended questions about prognostic uncertainty were asked. We identified major themes with an inductive approach. The Conceptual Taxonomy of Uncertainty was applied to further characterize these themes as data-centered, system-centered, and patient-centered issues of uncertainty.

Results

Nearly all surrogates (15 of 16) and physicians (19 of 20) recognized the emotional burden of uncertainty in the decision-making process for surrogates. More than three quarters of surrogates (13 of 16) described instances in which a lack of information regarding their loved one’s disease or prognosis created uncertainty in their decision-making process, identifying both positive and negative instances of prognostic communication by physicians. We found that physicians used one of three strategies to communicate prognostic uncertainty to surrogates: leaving no room for uncertainty, honesty about uncertainty, and range of possibilities. These strategies did not meet the communication preferences of the majority of surrogates, with more than a third of decision-makers (6 of 15) being frustrated by too much ambiguity about prognosis as well as the failure to acknowledge the existence of uncertainty.

Conclusions

We found that physician communication strategies rarely addressed surrogate needs regarding uncertainty adequately, suggesting an urgent need for future research into improved communication of prognostic uncertainty.

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Funding

This study was funded by National Institutes of Health National Institute of Child Health and Human Development grant 5K23HD080971 (principal investigator: SM). This project was additionally supported by the University of Massachusetts Medical School Center for Clinical and Translational Science, which is funded by the National Institutes of Health Clinical and Translational Science Award to the University of Massachusetts Medical School (UL1TR000161).

Author information

Authors and Affiliations

Authors

Contributions

KJ and TQ analyzed and interpreted the data for the manuscript. SM contributed to the conception, design, acquisition, and interpretation of the data. KMM contributed to the conception, design, and interpretation of the data. All authors (KJ, TQ, SM, and KMM) made significant contributions towards drafting and revising the article, as well as approving the article for publication.

Corresponding author

Correspondence to Susanne Muehlschlegel.

Ethics declarations

Conflicts of interest

SM reports grants from the National Institutes of Health National Institute of Child Health and Human Development and grants from the National Institutes of Health during the conduct of the study. The other authors declare no conflicts of interest.

Ethical approval/informed consent

This study has adhered to ethical guidelines, including obtaining informed consent for interviews with approval from the University of Massachusetts Medical School Institutional Review Board.

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Appendix

Appendix

Themes and sub-themes of uncertainty in ciTBI decision-making with representative quotes

Major themes of uncertainty Sub-themes Definition Representative quotes
Conceptual taxonomy category: SCIENTIFIC “DATA-CENTERED” ISSUES
Conceptual taxonomy category: scientific data-centered issues
 Surrogate decision-making processes None Uncertainty in the decision-making process due to a surrogate not knowing their loved one’s treatment wishes or due to lack of available prognostic information, including instances in which the surrogate verbalized that they chose the more “conversative” goals-of-care option because ofdue to uncertainty “She doesn’t have, I don’t think she has, anywhere that they should let her die if she gets to a certain point, or something. I don’t know if she had that written down anywhere”
“(…) [B]because we could have answered that question (of what to do) very early on within a few weeks if we knew that she was never going to feed herself, she was never going to speak, she was never going to be truly – if she was going to be like Terry Schavo, then we all would have come together and said, ‘“No. We can’t keep this going on.’” Yes. It would have certainly saved us a lot of pain and heartache”
“I decided that it was best to go with better safe than sorry and we should give her a chance for the more hopeful narrative would happen, so that’s what I did”
 Physician processes in determining prognosis None Uncertainty due to the inherent imperfection of prognostication or lack of long-term outcomes data “You don’t always have that, and that’s probably the most uncomfortable situation, when you have an ‘'in the middle of the road’' type of injury with somebody pushing you to make a decision or try to make prognostication in that early time period when you haven’t really gotten to know what direction you’re moving in”
“It is really rare that we get negative long-term feedback. We get a handful of positive feedbacks where the patient will return a year after injury and be doing well. Most of the bad outcomes are just lost. So we really have no idea who we encourage to go forward, or who went forward despite our poor prognostication, or who fulfills that negative destiny, or who gets better; so many of them are lost”
Conceptual taxonomy category: PRACTICAL “SYSTEM-CENTERED” ISSUES
Conceptual taxonomy category: practical system-centered issues
 Surrogate perspective on physician communication of prognostic uncertainty Too much ambiguity Uncertainty due to the physician’s ambiguity in communicating prognosis “Initially they told me… (…) from death to almost complete recovery that we would not know how far she could come for at least a year or 18 months. They told me that in the beginning and I couldn’t accept that. You have to tell me how and what’s going to be happening here”
Lack of ambiguity Uncertainty due to the physician’s lack of ambiguity or failure to mention uncertainty in communicating prognosis “When they know, they’re a hundred percent, but if they’re not a hundred percent, they should say that they don’t know and to see what will happen… (…) They should not take the hope away.”
Positive communication Instances in which surrogates described positive experiences with physician communication “[(The physicians]) explained everything. If we had a question, they answered the question. They explained it in layman terms so that we didn’t have to wonder what they were saying, and if we did have a question, they answered us”
Conflicting prognosis Instances in which surrogates described conflicting prognostic or diagnostic information provided by physicians “I obviously had two neurologists who were saying, ‘“Well, she could get out of this’” and one that was 90% chance she wasn’t. Who am I to – two out of three said, give it a chance, so I kind of went along that line.… (…)”
Physician communication of prognostic uncertainty Leaving no room for uncertainty Instances in which physicians discussed communicating prognosis with no uncertainty or ambiguity “Tell them that there is that one in a hundred, or one in a thousand or even one in a million chance that their loved ones is going to recover, they will take it. They are going to say, ‘“My loved one is the one. If you knew Joey, he is that guy".’ And so if I know and I am saying ‘know’ in quote, I know that patient is not going to have a good prognosis, I tell them with no uncertain terms, this patient is going to do poorly, I can tell you that with 100% certainty that there is no chance that this person will have a meaningful survival”
Honesty about uncertainty Instances in which physicians discussed communicating prognosis by acknowledging their uncertainty “I think when doctors say they do not know, that is admitting that we are all human and that the science is not perfect yet, and [(families]) really appreciate that, I think”
Range of possibilities Instances in which physicians discussed communicating prognosis by giving a range of possible outcomes “We try to give [(surrogates]) the expected deficits in a range of possibilities, from what the best possible outcome is to what the worst possible outcome and where in that range we think the patient is going to fall. And so we use the CAT scans and MRIs to do exam findings and mechanisms of injuries and then combine that with the patient morbid condition. And come up with the best guess as to what they’re outcome is going to be”
Conceptual taxonomy category: PERSONAL “PATIENT-CENTERED” ISSUES
Conceptual taxonomy category: personal patient-centered issues
 Surrogate experiences and emotions None Instances in which surrogates described prior experience with uncertainty in life, careers, or hospitalizations of other family members, and the emotional impact of uncertainty “So, I mean, there’s a head injury in my family, so I understood somewhat about, you know, how predicting the future of a head injury, especially as severe as [name]’s was, I didn’t expect anybody to tell me, you know, in three months [name] would be fine, or in four years [name] would be fine”
“(…) [A]and at the first place for long-term acute care and she started emerging a bit from the coma, it dawned on me, could I ever wait too long and then trap her and then not be able to make the decision to give her a graceful end. And that is the scariest thing of all and I still don’t have an answer to that”
 Physician perspective on surrogate experiences and emotions None Instances in which physicians described witnessing how uncertainty affects surrogates “[(surrogates]) seemed routinely very burdened by these decisions because they don’t feel informed and they’re looking to [(the physicians]) to give them something that [(we]) can’t quite give them”
  1. CAT, computerized axial tomography, MRI, magnetic resonance imaging

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Jones, K., Quinn, T., Mazor, K.M. et al. Prognostic Uncertainty in Critically Ill Patients with Traumatic Brain Injury: A Multicenter Qualitative Study. Neurocrit Care 35, 311–321 (2021). https://doi.org/10.1007/s12028-021-01230-3

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  • DOI: https://doi.org/10.1007/s12028-021-01230-3

Keywords

  • Shared decision-making
  • Traumatic brain injuries
  • Uncertainty
  • Intensive care units
  • Patient care planning
  • Communication barriers
  • Terminal care