Is informed consent a "yes or no" response? Enhancing the shared decision-making process for persons with aphasia.

Respect for patient autonomy and the need to have a comprehensive discussion of the risks and benefits of a medical intervention are two important issues involved in the process of obtaining informed consent. In dealing with individuals with aphasia, there may be particular challenges in balancing these two ethical imperatives. Although decision-making capacity may be preserved with aphasia, the patients' ability to fully participate in a dialogue regarding a proposed medical intervention is frequently impaired. We propose a process of enhancing informed consent for persons with aphasia while continuing to respect and enhance patient autonomy and the exercise of decision making for these patients. The use of a patient-selected "helper" during the informed consent process can improve the quality of the informed consent, while reserving final decision-making authority for the patient. Key words: aphasia, decision-making capacity, informed consent, stroke

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Respect for the autonomy of patients is a key principle in medical ethics, and it has strongly influenced the nature of doctor--patient relationships in recent decades. A cornerstone of patient autonomy is the requirement that patients be provided with the information needed to make informed decisions regarding their medical care. Informed consent is the term used for a process of discussion of the risks, benefits, and alternatives to surgical or other medical procedures. It is widely understood by health care providers that patients must have decision-making capacity (DMC) as a prerequisite for providing informed consent. Individuals who lack DMC (e.g., due to severe dementia) must rely on the substituted judgment of a designated health care proxy or guardian to represent their interests in the process of informed consent.

The process of informed consent not only requires that the individual have DMC but also imposes additional requirements beyond establishing DMC. The need for a dialogue between the patient and the health care provider is one aspect of informed consent that is particularly challenging. True informed consent requires that the patient demonstrate understanding of the medical procedure under discussion and also that the patient have a genuine opportunity to pose questions exploring aspects of the decision that he or she seeks to understand better. Even the most comprehensive and meticulous presentation by a health care provider may not adequately address or explain all potential issues of interest to the patient. Moreover, patients may have difficulty assimilating all aspects of the material presented by the physician, either due to the inherent complexity of the issues or the physcian's inadvertent use of medical jargon. Through questions and dialogue, repetition or re-explanation of key elements of the discussion is a common result.

Language and/or cognitive impairments of stroke survivors pose significant challenges in the assessment of DMC and the patients' ability to provide informed consent. Most attention has …