The value-laden nature of decision-making with the never-capacitated patient

Abstract

The values of individuals who have never had the capacity to express their preferences are often overlooked or even ignored in the decision-making process. The case of “Michael,” a non-verbal young adult with a genetic condition and intellectual disability, is presented to challenge the traditional approach of relying solely on clinical indicators and the “best interest” standard narrowly construed in healthcare decision-making. Michael's interaction with his environment, gleaned through his family's input, illustrates that values and quality of life can be discerned through observed behaviors and preferences, even in the absence of communicative ability. We argue for a broader definition of “values” that encompasses any aspect of life that brings meaning or enjoyment to the individual. This model not only personalizes care for never-capacitated individuals but may also be applied to other incapacitated populations, such as those with dementia, suggesting that past directives may not always align with their evolving values and interests. Underlying this expanded understanding of values in healthcare is a patient-centered approach that accounts for personal elements that contribute to an individual's sense of purpose and satisfaction.