We knew that the case would be a difficult one. The patient was a man in his mid-40s who had several serious chronic conditions and was on high-dose steroids. He had been operated on 10 days earlier by one of my partners for a bowel obstruction and had required a resection of a small portion of the terminal ileum. Unfortunately, on the day after surgery, it became obvious that the patient needed a reexploration for bleeding. He had developed clear evidence of a significant anastomotic leak and had to be taken emergently back to the operating room.
His condition had been worsening during the day. We had booked the case in the OR but had been put off by a trauma emergency and a neurosurgical emergency. During the 3 hours of waiting to take him to the OR, the patient’s sister and mother came to the hospital and were now waiting with him in the preop area. I was on my way up to see him when my resident called. Despite the patient having signed an operative consent form a few hours earlier when we booked the case, he was now “declining” an operation. I was surprised. This man had undergone several operations in the last few years and two in the last 2 weeks. I arrived to find the patient stating that he did not want surgery. Lying in bed, he was adamant that he should not have surgery. The surgical resident who had spoken with the patient several times over the last few hours was also surprised. The patient’s family members were yelling that, of course, he wanted surgery and why would he change his mind.
This is a difficult situation since one of the central tenets of the ethical practice of surgery is to allow patients to make decisions about their own care. The right to make autonomous choices even extends to circumstances in which patients make what we might consider “bad” decisions. As long as the patient has the capacity to make an autonomous choice, he or she should have that choice respected.
This patient, who just a few hours ago had agreed to surgery, now seemed to have changed his mind. Although it can be frustrating, we do allow patients to change their minds. On the one hand, this was a straightforward case. The patient was refusing a potentially life-saving operation. Such a situation is never pleasant for a surgeon, but as long as the patient understands the risks, we respect such choices.
However, my resident made an astute observation. She pointed out that, when asked why he now did not want surgery, he replied that “this is all a movie – it’s not really happening.” The patient appeared to be oriented to person and place, but nevertheless, his reasoning seemed to have been altered. It appeared that this patient was no longer making sense because his underlying medical condition had deteriorated. We considered whether he was becoming septic and that this change in medical condition had rendered him unable to make an informed decision. My resident, who had discussed the operation with the patient several times, stated that the patient’s decision making seemed very different than even an hour ago. His family members agreed, stating that, up until a few minutes before, he was in favor of surgery. They pleaded with us to just take him into the operating room.
We considered our options. We could delay surgery and consult psychiatry to ask them to assess his competency. However, on a weekend night, this would likely take several hours. We considered the option of waiting in the preop area for the patient’s medical condition to further worsen. If he became overtly septic and lost consciousness, then we could readily turn to the family members – his surrogate decision makers – and ask them to consent to the procedure. Although this “by the book” approach might take away any worry that we were overriding an autonomous patient’s choice, we knew that it would unnecessarily expose him to greater operative risks. This option was not in his best interest and therefore not much of an option.
Ultimately, the surgical resident, the attending anesthesiologist, the family, and I decided that his decision to not have surgery at this moment was not consistent with his prior decisions, and he could provide no reason for changing his mind. We brought the patient into the operating room and explored him. He did have a large anastomotic leak with a large volume of enteric contents in the peritoneal cavity. He survived the operation and, not unexpectedly, required a long postoperative stay in the hospital. Once he was a few days out, I inquired about whether he was glad that he had surgery. He was quick to state his confidence that it had been the right choice for him. He did not even remember having ever refused the surgery.
Although this case raised many concerns for all of us involved in the patient’s care, one overriding lesson that came through to me. Informed consent should not be viewed as a solitary event, but a conversation. This patient had expressed his desire to have surgery multiple times to my surgical resident and to his family. Even though we should never take the position that patients cannot change their minds, we should carefully question those choices that are inconsistent with the prior discussions that have been undertaken. Good communication skills – including listening to the patient, understanding the patient’s reasoning, and reflecting on the entire conversation – are essential in obtaining informed consent.
Dr. Angelos is the Linda Kohler Anderson Professor of Surgery and Surgical Ethics, chief of endocrine surgery, and associate director of the MacLean Center for Clinical Medical Ethics at the University of Chicago.