Clinical Decision‐Making for Patients with Disorders of Consciousness

Abstract

In this issue, Willemijn van Erp and colleagues describe the outcomes of a nationwide cohort of patients in the Netherlands diagnosed with unresponsive wakefulness syndrome (UWS), better known in the United States as vegetative state (VS). Outcomes of this cohort were noteworthy for 2 findings: the nearly complete absence of referrals to multidisciplinary neurorehabilitation centers at hospital discharge, and that half of the patients died from withdrawing medically provided hydration and nutrition— a decision triggered most often by an intercurrent illness— which was a mode of death that increased in frequency during the study period. The authors scrutinized the process of care of UWS/VS patients and identified a series of deficiencies they grouped into 3 categories that comprised a “vicious circle”: (1) epidemiological limitations resulting from diagnostic and prognostic uncertainty given the small number of patients, (2) suboptimal treatment of these patients because of disorganized systems of care, and (3) suboptimal clinical decision-making that favored allowing them to die by withdrawing medically administered hydration and nutrition. To address these deficiencies, the authors recommended interventions to improve the accuracy of diagnosis and prognosis, improve the systematization of care, and improve critical decision-making to enhance the quality of medical treatment. The first 2 components of the “vicious circle” identified in the Netherlands are easily transposable to the care of UWS/VS patients in the United States. But the authors’ analysis of the third component is not directly applicable because of prevailing medical practice and medicolegal differences in clinical decision-making between the Netherlands and the United States. In this commentary, I endorse the authors’ thoughtful analysis and recommended improvements but reorient their third component to make it compatible with accepted standards of end-of-life decisionmaking in the United States. The principal difference between medical decisionmaking in the Netherlands and the United States is the ultimate locus of decisional authority; in the Netherlands it is vested in the physician, whereas in the United States it is vested in the patient. Prior to the 1970s, medical decision-making in the United States, as in other countries, was physician-centered, meaning that it was physicians who determined treatment decisions. With the rise of the American civil rights movement and the expanding emphasis on patients’ rights and informed consent to (and refusal of) treatment, a gradual transition took place in the United States to a patient-centered decision-making locus. Now, patients are granted the right to accept or refuse offered tests and therapies, and physicians generally must acquiesce when a patient or lawful surrogate decision-maker refuses treatment. A relevant example is the decision to discontinue life-sustaining therapy in serious or terminal illness. In the former physician-centered model, it was the physician who determined when it was time to cease life-sustaining therapy, whereas in the current patient-centered model, it is the patient (or lawful surrogate) who makes that decision by refusing further treatment, a determination informed by discussions with the physician. The transition from a physician-centered to a patient-centered model currently may be starting in several European countries (including the Netherlands) because, as described by van Erp and colleagues, patients and their families are included in medical decisions, although these decisions ultimately remain under medical authority. Patients with UWS/VS obviously lack the capacity to make medical decisions, but their right to consent or refuse therapy is not surrendered; rather, it is transferred to a lawful surrogate decision-maker to exercise on their behalf. All states now offer legal means for citizens to name a lawful surrogate decision-maker while they retain capacity. These appointments are known variously as health care agents or durable powers of attorney for health care. Many states also enacted provisions that automatically appoint a lawful surrogate in situations in which a patient has become incapacitated and no health care agent had been appointed previously. Most states endow these agents with the same authority as the patient to consent or refuse treatments, although some restrict their authority to withdraw medically provided hydration and nutrition in certain circumstances. Physicians generally should conduct the same consent conversations with these lawful