From Impatience to Empathy

We gave J.H. a label the first time we met her, as many often do—“Uncooperative.” She was a patient with autism and intellectual delay who had presented to the emergency department (ED) with vaginal bleeding. After receiving the gynecology consult request from the emergency medicine physicians, we were already mentally formulating our recommendations based on the information they told us over the phone. “Does not cooperate with exam,” “no acute surgical intervention is currently warranted,” and “recommend outpatient follow–up.”

When we arrived in her room, she was sitting in the hospital bed surrounded by a protective shield of caregivers from her group home. We introduced ourselves as the gynecology team but it was obvious that J.H. could not communicate verbally. Upon speaking with her caregivers we learned that she had Cowden syndrome, a genetic disease that confers significantly increased risks for several types of cancer including endometrial, thyroid, and breast cancers. J.H. had also been having heavy vaginal bleeding, which was difficult for her caregivers to manage, and this was the reason she was brought into the emergency department. After attempting to gain as much information as we could from the caregivers, we started to perform an abdominal exam, which made J.H. extremely agitated. We quickly stopped the exam and the caregivers helped to calm J.H. We remember our mixture of emotions—bewilderment at the agitation and commotion in the exam room full of people, frustration at not being able to complete our exam fully, and annoyance that this “difficult patient” was taking up our limited time between surgical cases. Thankfully, these knee–jerk reactions were quickly replaced by feelings of concern for the patient and the realization of how frightening an experience this must be for her—being in a strange place with white walls and unfamiliar people, unable to communicate her thoughts.

J.H.’s mother, her surrogate decision–maker, was not at the hospital that day but the caregivers told us that she had expressed a strong desire for her daughter to have a prophylactic hysterectomy due to her lifetime risk for developing uterine cancer as well as a permanent solution to the bleeding concerns. What had initially started as a simple ED consult was now turning into a complex question. The ethical and legal dilemma was obvious—whether to perform a major surgery that would irreversibly sterilize a patient who could not consent on her own behalf in order to minimize the potential risk of cancer later in life. While medical management could improve the bleeding and potentially reduce the risk of cancer, frequent exams would be necessary to ensure that the medication was working and that premalignant changes were not occurring in J.H.’s uterus. However, based on our experience in the emergency department, J.H. would need anesthesia for such exams and it was doubtful the medications would completely normalize her elevated risk of uterine malignancy. We knew that in order to address this question, we would need to see J.H. again along with her mother to have a frank discussion about the risks and benefits of such a decision, and so we made plans to see her in our outpatient clinic.

Several days later, J.H., her mother, and the group home caregivers arrived in the office. Anticipating a complex discussion, we had requested a representative from the hospital ethics committee to join us at the visit. We didn’t know what to expect meeting J.H.’s mother for the first time but as we sat in the room talking, it was obvious that she was truly trying to act in her daughter’s best interest. Similarly, it was touching to watch the faces of the caregivers from the group home as they nodded in solidarity with J.H.’s mother, also clearly wanting what was best for her and supporting her mother in this difficult decision. J.H., meanwhile, seemed content to sit silently with us during the discussion, surrounded as she was by people who cared deeply for her well–being.

After extensive partnership with the ethics consultants...