Diagnostic and ethical challenges in disorders of consciousness and locked-in syndrome: a survey of German neurologists

Nicole Palmour,Eric Racine,Ralf J Jox,Gian Domenico Borasio,Eva Hoster,Katja Kuehlmeyer

doi:10.1007/s00415-012-6459-9

Abstract

Diagnosis and decisions on life-sustaining treatment (LST) in disorders of consciousness, such as the vegetative state (VS) and the minimally conscious state (MCS), are challenging for neurologists. The locked-in syndrome (LiS) is sometimes confounded with these disorders by less experienced physicians. We aimed to investigate (1) the application of diagnostic knowledge, (2) attitudes concerning limitations of LST, and (3) further challenging aspects in the care of patients. A vignette-based online survey with a randomized presentation of a VS, MCS, or LiS case scenario was conducted among members of the German Society for Neurology. A sample of 503 neurologists participated (response rate 16.4%). An accurate diagnosis was given by 86% of the participants. The LiS case was diagnosed more accurately (94%) than the VS case (79%) and the MCS case (87%, p < 0.001). Limiting LST for the patient was considered by 92, 91, and 84% of the participants who accurately diagnosed the VS, LiS, and MCS case (p = 0.09). Overall, most participants agreed with limiting cardiopulmonary resuscitation; a minority considered limiting artificial nutrition and hydration. Neurologists regarded the estimation of the prognosis and determination of the patients’ wishes as most challenging. The majority of German neurologists accurately applied the diagnostic categories VS, MCS, and LiS to case vignettes. Their attitudes were mostly in favor of limiting life-sustaining treatment and slightly differed for MCS as compared to VS and LiS. Attitudes toward LST strongly differed according to circumstances (e.g., patient’s will opposed treatment) and treatment measures.

Highlights

The vegetative state (VS) and the minimally conscious state (MCS) are conditions that result from severe traumatic or non-traumatic brain injury, referred to as disorders of consciousness (DOC)
Participants were asked how certain they were on a numeric rating scale (NRS) (0–10, 10 = extremely certain) about the diagnostic category that they assigned to the case
The participants should estimate the quality of life of such a patient on a NRS, including the options of ‘‘no quality of life’’ and ‘‘I don’t feel able to rate the patient’s quality of life.’’ Physicians’ attitudes toward limiting life-sustaining treatment (LST) were elicited by the following request: ‘‘Please specify: In the prior case lifesustaining treatment should be limited (a) never, (b) always, or (c) under certain circumstances.’’ If participants chose ‘‘always’’ or ‘‘under certain circumstances,’’ they had to specify these on given lists of ten different circumstances

Summary

Introduction

The vegetative state (VS) and the minimally conscious state (MCS) are conditions that result from severe traumatic or non-traumatic brain injury, referred to as disorders of consciousness (DOC). Misdiagnosed patients were presumed to be in VS, but after a reassessment they were categorized as being in either a MCS or locked-in syndrome (LiS), where the patient is fully aware, has quadriplegia and aphonia or severe hypophonia, but is usually capable of communication by eye movements or blinking [8, 9]. Inaccurate diagnosis is both a medical and an ethical problem. It biases prognostication and therapeutic strategy, and may lead to flawed decisions to withdraw or withhold life-sustaining treatment (LST) [2, 10]

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Methods

Conclusion