Editors' note: The intolerable burden

In “The intolerable burden,” Ludwig Gutmann describes the anguish he felt when an 80-year-old patient with Guillain-Barré syndrome, who reluctantly agreed to intubation despite previously being DNI, died after being palliatively extubated, at her request. He acknowledges feeling distressed that (1) the patient may not have understood that the burdens of intubation and weakness were temporary, despite the fact that he'd given her and her family an optimistic prognosis, (2) the ICU team complied with her wishes, rather than sedating her and continuing treatment with IVIG, and (3) the ICU team did not “negotiate” with her and her family after extubation and instead focused on comfort and administered analgesics as needed. In response to this essay, Dr. Todd Janus notes that he believes intubating this patient, who was previously DNI, and keeping her intubated when she asked to be extubated is a “horror” and reports that he believes that there is no role for paternalism in modern medicine. Dr. Gutmann agrees that paternalism is no longer appropriate, but comments that “there are moments when physicians need to be forceful in influencing the decision-making process, especially when the patient's judgment appears flawed and prevents the strong possibility of a good outcome.” It is imperative that we, as clinicians, be both transparent and thorough when we communicate with patients and their families. Ultimately, the principle of autonomy dictates that patients and their legal decision makers must be allowed to make uncoerced, independent choices, but we must facilitate the decision-making process by educating them with the information they need to do so.