Building Trust and Giving Voice to the Patient's Wishes

Kathleen A. Gamblin, RN, BSN, OCN

Her nervous eyes met mine as I entered the small exam room.

Would I be the person bringing her the results that she so anxiously awaited? I introduced myself and explained to her that I had a few questions and that the physician would be in to see her soon. As we talked, Linda told me the too often heard story of a routine chest x-ray before surgery, and suddenly, the anxiety over having a gallbladder removed was overshadowed by the news that the x-ray revealed a large lung mass. A CT scan and then biopsy were performed after her recovery from surgery, and now she was at our multidisciplinary clinic awaiting the results.

We were interrupted by a knock on the door, and one of the physicians strode into the room. He wasted little time as he explained to her that she had lung cancer, and it was his opinion that it had most likely spread and that further surgical work-up was needed. “Do you have any questions?” he asked, almost as an afterthought. Her shocked expression quickly changed to tears. The physician continued speaking about her plan of care as the tears continued to fall. He concluded with “Do you understand?” and she silently nodded her head, but from her dazed expression it was apparent to me that she had heard nothing beyond, “You have lung cancer.”

The cardiothoracic surgeon came in next, and he seemed to understand that she could take in very little. As he sat and explained, he looked to me for confirmation that I would help answer the questions that he knew would come later. After he left the room, I spent additional time explaining the next steps that we would take and my role as guide in helping her on the journey she was about to begin.

Getting to Know the Patient

The next few weeks allowed me to get to know Linda much better. Conversations centered on her lung cancer, and her plan of care gradually gave way to sharing her life story. A single mother with a young daughter, she was estranged from her family, and she worked as a waitress to support herself and her daughter. She had worried about paying her bills when she was healthy, and now medical bills threatened to overwhelm her.

Trust was built as we began to work through her concerns one by one, obtaining financial assistance to cover her care, finding resources to help her daughter understand and process her mother’s diagnosis, and referrals to behavioral health to assess her anxiety and fear. In addition, I shared clinical information about her diagnosis, and expected treatment.

The day of her outpatient procedure came, and when I wasn’t able to reach her in the evening I checked our EMR and found her name on the ICU patient list. An unexpected EKG abnormality and subsequent surgery found fluid around her heart. When I spoke to the cardiothoracic surgeon later that day, he told me he had found evidence of cancer within the fluid and even on the surface of her heart. It was apparent that her disease was much more extensive than we had originally thought.

I wasn’t sure what to expect as I entered her room, but her sweet smile was still in place and her hand found mine as she whispered, “Hello.” Over the next few days I visited with her daily in the ICU and then on the pulmonary floor. Confined to the bed and now requiring high levels of oxygen to maintain her saturations, our visits were sometimes spent sitting quietly, while other times she spoke of her estranged family and how much she missed them—her daughter, their life, the unfairness of this diagnosis, and even her belief in God. Waiting for her to take the lead in the conversations allowed her to be in control when she was in control of very little else.

Providing Autonomy, Respect, and Dignity

Several days later as I entered her room, I found two men sitting at her bedside who introduced themselves as her brother and her nephew. She had reached out to them, and 15 years of estrangement fell away. They had caught an immediate flight to be with her. As they excused themselves to go get something to eat, she indicated the chair next to the bed, and I sat down. “You know they want me to start treatment soon, don’t you?” she asked. I nodded and sat quietly. “I don’t want to do that,” she finally said.

Her voice was low and quiet as she whispered, “I want to go home.” “Home to your house?” I questioned. “No, I want to go home to California where my family is. I want my daughter to be with my family.”

Promising nothing I decided to have a conversation with her admitting physician, a pulmonologist who I knew only slightly. He listened but said, “You know that the oncologists want to start treatment?” “I know, but what she wants is to go home to California.” He hesitated for a second and then said, “You won’t find an airline willing to fly her there.” “But if I can?” I persisted. “Then I will write the orders,” he said.

The process took two days, but in that time I found an airline willing to accommodate her oxygen needs and a private donor willing to pay for her flight. Arrangements were made quickly, and her discharge date was set. I went to say goodbye to her. She hugged me and thanked me: “Don’t say goodbye; say until we meet again because I know we will.” My eyes filled with tears but I managed, “Until we meet again.”

Linda made it to California and was reunited with all of her family. She was able to place her daughter in their care and know that she would be well-cared for. Two weeks later, Linda died with her family at her side having made all of her own decisions, maintaining her dignity and autonomy, the very essence of person-centered care.

Kathleen A. Gamblin is Coordinator, Oncology Patient Navigation, at the Northside Hospital Cancer Institute in Atlanta.