Abstract
I entered the hospital and found my way through the emergency credentialing process and up to the floor that my host colleagues in the Pain and Palliative Care Program called home. They were gracious and made space for me and my team. We all knew that the “rules of engagement” would have to be figured out as we went along. No one knew for how long this “occupation” would go on and no one yet knew how integrated we should become. But everyone had a welcoming, can-do attitude.
“Oh you know this patient, she is from Bellevue!” Dr. L exclaimed, almost with a sense of relief in her voice.” She is on her way down now from the other floor to wait on our service. Her family will take her to Guatemala tomorrow. Get some sedation ready. They told me she is screaming and agitated.”
Mrs. C—we had known her for over two years now. She had a malignancy that responded well to treatment but once she felt better she was lost to follow-up, or MIA in military language. When she was in the hospital she was always considered a difficult patient. Psychiatry and palliative care services were always called because the team struggled with how to deal with her. Family was often inaccessible and Mrs C was felt to have a personality disorder—histrionic, sometimes irrational, inconsistent—but she was also together enough on most occasions to make her own medical decisions. The struggle was that most often the providers did not like her decisions. She wanted to stay when we wanted her to go home, she wanted to go home when we wanted her to stay, we fixated on her malignancy and she was focused on her injury from many years ago. “She is in denial” was the retort, as though this somehow would make it easier for us to deal with the challenging personality barriers.
This time was a little different, though. This time her malignancy had spread to the tissue around her brain, and this time she was found to lack decision making capacity. Family still stayed away. We assumed they were afraid that the challenge of caring for her would fall on them, and they worked 16 hours a day or lived in other cities so could not take it on.
As we came to terms with the post-hurricane evacuation war zone, Mrs. C was losing her battle with cancer. As we tried to negotiate the rules of engagement, Mrs. C's own peace negotiations were moving along nicely.
I waited for her to arrive on the floor, feeling a bit awkward since I didn't know the nurses or house staff and they didn't know me. Dr. L entered energetically and suggested the nurse draw up some Ativan and Haldol, since the patient was by report agitated and in need of sedation right away when she arrived.
Transport wheeled her onto the floor and parked her stretcher right in front of me. “Señora, hola. Usted recuerde mi cara?” I asked in my broken Spanish. She looked frail, though still with a round face, noticeable skin discolorations, her battle scars, on her now thinner arms. She opened her eyes.
A look of recognition and then a loud and animated “Mi doctorita, doctorita!” then in broken English. “They closed my hospital doctorita,” she said with tears in her eyes and arms outstretched to hold my hand or hug me. “I'm so glad to see you,” I reassured her. This was not agitation or need for sedation; this was her baseline—her histrionic, sometimes frustrating, wild, real, and raw baseline. But no one would have known that if we were not there to tell them.… I guessed it was good we were there after all.
The rest of the care for her was usual for palliative care consultations in a public hospital, for undocumented poor patients who want to return to their home country—advising families on how to communicate with the airlines, making sure our goals were aggressive enough to allow her to safely fly home while also considering her comfort during the trip and once she arrived in Guatemala. Family had come through as the peace negotiations with her illness had come to a truce—she was dying but wanted to go home. Now it was clear what everyone needed to do—no more uncertainty.
Our uncertainty as providers displaced from an evacuated hospital continued, but the war zone was calmer. Seeing her reaction when she saw her familiar providers was all I needed to know about how to keep going during a time of uncertainty, to keep renegotiating the rules of engagement.
She made it home.… I know we will make it home to Bellevue too.
Names and details were changed to de-identify people in the story.
Bellevue Hospital Center reopened in February 2013 after a three-month closure due to damage from Hurricane Sandy.