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Macomb Community College *

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1355

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Medicine

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Apr 3, 2024

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Case Dave’s health is on the decline. Despite surgery, chemotherapy, radiation, and hormonal treatments, his prostate cancer has metastasized to his bones. When he’s been in and out of the hospital for four months or visiting clinic for lab tests and treatments, he’s often accompanied by his wife Jessica and one or both of his two children, Christine and Alex. Dave’s family has remained optimistic, confident, and encouraging; they fully expected him to pursue aggressive treatment. Dave’s physicians, however, now want to transition his care and incorporate hospice and palliative approaches to managing his illness. The palliative care physician, Dr. Barelle, sits down alone with Dave to discuss his end-of-life wishes. Dave insists on pursuing aggressive acute care for his prostate cancer, but he also seems exhausted. As Dr. Barelle continues to describe what aggressive acute care would entail over the next months and begins to probe deeper into Dave’s goals of care, Dave slowly confesses that he worries about aggressive treatment, states that it isn’t what he wants, and also says, “I’m not the hero type.” He goes on to express that he particularly values his independence and that he fears pain, suffering, impending loss of functioning, and loss of his autonomy. 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. What should she do? Should she downplay the potential of aggressive care to better persuade the family to respect the patient’s wishes? Commentary In order to best care for Dave, Dr. Barelle must consider how to respect both his autonomy and the role of his well-intentioned and loving family in his care. She must also remain an advocate for his stated wishes without being paternalistic about his choice to follow his family’s wishes. Furthermore, Dr. 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? Patient Autonomy and Informed Consent Expressing respect for patients’ autonomy means acknowledging that patients who have decision-making capacity have the right to make decisions regarding their care, even when their decisions contradict their clinicians’ recommendations [1]. Beauchamp and Childress remind us that autonomy requires both “liberty (independence from controlling influences) and agency (capacity for intentional action)” [2] and that liberty is undermined by coercion, persuasion, and manipulation [1]. 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. Spence in 1972 [3]. 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 [1]. American bioethics circumscribes the role of others who might influence the patient to make a choice that does not put his own wishes or best interests first. Although this emphasis is intended to prevent patients from being coerced, especially by medical professionals, it ignores that a patient is part of a family. Patients often wish to take their family members’ opinions into account when making medical decisions, as they would with many other important decisions. Respecting patient autonomy thus includes respecting both how patients wish to make a decision and the decision made, even if the decision is to allow their family’s desires to supersede their own [4, 5]. Influence within Families 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. It is both common and socially acceptable for a patient to consult family members in order to aid in decision making. Focusing on the strict definition of autonomy and failing to recognize an individual as part of a family leads to an incomplete understanding of decision making for informed consent [2].

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. Therefore, clinicians must be mindful of the potential for this dynamic and advocate for the patient to ensure that he or she feels free to make an independent decision. In this case, Dave has elected to make his decision based on the wishes of his family. He and his family have been presented with the relevant information to consider, and Dave appears to be making that decision without evidence of coercion by his family. Dave’s decision therefore appears to be consistent with Beauchamp and Childress’s description of the five components essential to informed consent: competence, disclosure, understanding, voluntariness, and consent [1]. In Dave’s case, his competence is not in question. Dr. Barelle has disclosed what aggressive care and comfort care would be like and Dave appears to understand the differences between treatment options. He is making his decision without undue influence from his family or clinician, and he has given his consent to proceed with aggressive treatment. Despite giving informed consent, he continues to struggle with the conflict between his desire to avoid further aggressive therapy and his desire not to cause additional pain to his family by refusing treatment that they wish him to undergo in hopes of prolonging his life. His conflict may cause discomfort for Dave and Dr. Barelle, but his decision is voluntary. Although it might be challenging to

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