The ideal of “informed consent” is a hallmark of Western medical ethics that came about following the horrors recounted in the Nuremberg trials and was codified in American law through Canterbury v. It requires physicians to respect patients’ autonomy by giving them the information needed to understand the risks and benefits of a proposed intervention, as well as the reasonable alternatives (including no intervention), so that they may make independent decisions.
A patient’s independence is traditionally the highest priority in American bioethics .
He finally admits that aggressive acute care seems to him to be excessive and futile at this point but that he doesn’t want to let his family down by not “fighting.” He fears that his family thinks of hospice and palliative care as capitulating and “giving up.” Dr.
Barelle has suspected that Dave’s wishes were diverging from his family’s, and she wonders how to acknowledge this and how to advocate on Dave’s behalf in ways that won’t be divisive. Should she downplay the potential of aggressive care to better persuade the family to respect the patient’s wishes? Barelle must consider how to respect both his autonomy and the role of his well-intentioned and loving family in his care.
Reminders to respect a patient’s liberty are generally directed toward clinicians, but family members can certainly coerce, persuade, or manipulate a patient.
Agency, however, allows a patient to consider how a decision he or she makes might affect his or her family members.
Despite the fact that most families offer suggestions with the best intentions, there are situations in which family members become unduly persuasive, manipulative, or coercive.
For example, if family members are threatening to remove support, financial or otherwise, for patients if they do not make the decision desired by the family, the family would be manipulating the patient.
She must also remain an advocate for his stated wishes without being paternalistic about his choice to follow his family’s wishes. Barelle is in a challenging position as she is newly involved in Dave’s care and does not have a long-standing relationship to serve as a foundation for these difficult conversations.
So, we might wonder at this point, what is the appropriate nature and scope of autonomy and the role of family members in a case like Dave’s?