Perspective
The Best Care
Although we routinely offer the most advanced medical care, we struggle to provide what patients need most.
By Gwen Wagstrom Halaas, M.D.
His breathing waxed and waned rhythmically. His thin hand was warm and dry as I held it tightly, feeling my own pulse and wishing I could share my vitality with him. I felt for his pulse with my other hand, my eyes watching his chest. The room was white, sterile—the only color coming from a collage of family pictures. It was quiet, peaceful. With children’s lullabies playing softly in the background, it was a sacred place. Waiting and watching, I breathed shallowly, unwilling to disturb this moment. I knew this agonal rhythm and expected the outcome, but when his chest went still, I was stunned. I sat and held his hand, praying and wondering if he deserved the care he had received.
My uncle Arnold was a simple man, married for more than 50 years to my father’s only sister. He was a bookkeeper, as was his father—a father he had never known because he died when Arnold was just a baby. A man of few words, we were never sure what Arnold was thinking. Once at a family gathering, we observed an extraordinary event: our quiet uncle engaged in an animated conversation, gesturing with his hands and laughing softly with our equally quiet uncle-in-law. Clearly, these two understated men had a language of their own.
Arnold received the best medical care available at a well-known academic medical center. The health professionals and medical staff did their very best to meet his needs. Arnold had been living independently with his wife in an apartment complex for seniors. His health had been deteriorating for some time, but to the casual observer, he was just aging quietly. One day, a member of the apartment complex staff became concerned about Arnold’s appearance and called an ambulance that whisked him off to the academic medical center. It was the beginning of the end. He was quickly and efficiently evaluated and found to have a ruptured cardiac valve that had caused his aging heart to decompensate. Cardiovascular surgery was in order.
As his physician-niece who had power of attorney, I had a frank conversation with my 86-year-old uncle about what was wrong and the plan for surgery and his recovery. In a clear and surprisingly adamant voice, he made his wishes known: “I want surgery.” We went over his advance directive. Would he want to be on a ventilator? What about resuscitation if his heart stopped? “I want everything done,” he told me. He seemed to understand and appeared to be ready for what he had clearly been told would be a risky and difficult surgery. I was not as certain.
Surgery was scheduled for the next morning but was delayed because of higher-priority patients. Arnold waited, hungry but patient. Finally, the attendant rolled him into the OR at noon. I anticipated a long wait, but after six hours, I asked the young woman at the waiting room desk to call the OR. She relayed the message that there was difficulty weaning him from bypass but that the surgeons were sure that it wouldn’t be long. At 9:30 p.m., I caught a brief glimpse of him, hidden under sheets and tubes, as they rolled him down the hall to the ICU. His surgeon stopped briefly. He calmly and compassionately described the challenges of the surgery but reassured me that he had operated on many others in their 80s and was expecting a full recovery.
The next day in the ICU, Arnold appeared gaunt and frail, attached to a ventilator and a mess of tubes. But it wasn’t his physical appearance that haunted me. When I called his name, his eyes caught mine. There was a stark look of terror, an unspoken plea for help—pure panic. I took his hand and, leaning close to his ear, said, “Surgery went well. Your surgeon is very pleased with the outcome. I know it is hard to be on the ventilator, but you will recover.” His eyes opened wide and looked directly into mine; he shook his head. From that time on in the ICU, if his eyes were open, the look of terror and the spasmodic silent pleas never ceased.
Over the next two weeks, Arnold improved. He was taken off the ventilator and the number of tubes gradually decreased. He slept during the day and was wide awake at night. He had difficulty swallowing. The doctors thought it was from being intubated. Worried about his healing, they ordered TPN and eventually inserted a G-tube. Months later, he still couldn’t be tempted with food. Only with persistent coaxing would he eat one or two bites. Tube feedings were his only nourishment. Despite normal pulse oxygen readings, he depended on oxygen to appease his anxiety.
His family took turns visiting. He always knew who we were and never complained or asked any questions. “Hey, Arnie, how are you today?” “OK.” “Any pain?” “No.” He spoke few words, enough to convince us that he was oriented, and we just assumed he was back to his quiet ways. In fact, as soon as we would set foot in the room, he would acknowledge us then promptly fall asleep. He reserved his best moments for his wife. His face brightened with a crooked smile when she arrived, and he would wake up to kiss her goodbye when she left.
As he regained his strength, he would repeatedly press his call button, irritating the nurses. At first this seemed to be an intentional call for help, but soon we noticed a pattern. At the end of our visits we would ask, “Is there anything you need?” He would shake his head. But as we stepped from his room into the hall, the red light would go on. We would turn back and ask again. Nothing needed. This pattern was repeated every day. Frustrated, we tried to talk to him and apologized to the staff. Nothing worked.
Now when we visited, staff would greet us and immediately disappear. Knowing that having us there gave them an opportunity to address another patient’s needs, I wasn’t concerned. But when I searched for someone to give me information on his status, I couldn’t find anyone. Nursing assistants would eventually respond to a call button, but getting someone to answer our questions was nearly impossible. When I asked for the physician in charge, the response from the nurse was, “The team is rounding and should be by in 20 minutes. Can you wait?” “Of course.” After 90 minutes and two more requests, I would get a response. Usually, it would come from a medical student, looking somewhat anxious but doing his or her best to be helpful. Eventually, someone would render a quick opinion or ask me what I thought. But for the most part, no one could answer my questions. As a family member, I simply wanted someone’s attention and reassurance or a simple explanation of a plan.
Maybe it was my introversion, but I had to tell myself not to be intimidated by this experience. I am a physician! How do others without my knowledge and capability cope? The custodial staff turned out to be the most comforting. Without a word of English, their smiles and nods expressed sincere compassion for Arnold and for us. The only staff I could reliably connect with were the social workers. Always respectful and caring, they reassured me and worked to get my questions answered.
Time brought healing from his surgery but little else changed. As Arnold’s days and nights remained confused, the staff would wheel him into the hall at night where he could observe the activity—and be away from the call button. Eventually, his pressing the call button was replaced by him yelling, “Help, help!” One nursing home refused to keep him, citing inadequate staff to attend to his constant demands. Finally, we found a caring home where the staff explained that, yes, he calls out for help, but when they go to him, he tells them what he needs and is then fine. The tireless staff cared compassionately for my uncle until his death, gently changing his clothes and moving him, speaking soothingly to him, joking and teasing him sweetly.
During Arnold’s last months, he bounced between the nursing home and the hospital. The high-tech, academic hospital full of subspecialists and teams of learners provided the best medical care for whatever ailed him—a series of complications not unexpected—chest tubes, a pacemaker, treatment for C. difficile. But each time he entered the ivory tower, we encountered challenges. Receptionists didn’t know which room he was in, telephone operators said he wasn’t a patient, no one could find his advance directive (after multiple copies had been supplied). Medications would be abruptly discontinued or generously dosed. X-rays were not reviewed or were duplicated. Everyone was doing their best to care for him, but no one communicated with each other or with us.
Knowing full well the challenges of the hospital and of caring for such patients, I tried to be understanding and respectful. But I lost my composure once and played the “doctor” card. Soon after his first surgery, he suddenly leaned forward complaining to me of shortness of breath. “Help me, help me.” A respiratory therapist was with another patient in the room. “Can you help? I don’t know what is wrong.” She rolled her eyes and said, “I’m busy right now.” “Who is his nurse?” “She’s busy taking care of other patients.” “I want to talk to the doctors taking care of him.” “They’re busy rounding.” “LOOK, I’M A DOCTOR, AND I NEED SOME HELP FOR MY UNCLE….” She rolled her eyes again as she kept on working with the patient in the other bed.
Living through this experience with Arnold has made my work seem even more compelling. I teach students to be compassionate, caring physicians, nurses, and pharmacists who work together to provide effective, collaborative care. I believe that my uncle received the best therapeutic care. But I am haunted by the look of fear in his eyes, his pleas for help, and his refusal to sleep at night. One of his ICU nurses told me he had experienced this with many older men who were afraid to die. Afraid to die? Or afraid to live like this? We have laid Arnold to rest, but I cannot forget what I saw in his eyes in the hospital. We must do better. MM
Gwen Wagstrom Halaas directed the University of Minnesota Academic Health Center’s Center for Interprofessional Education and was a member of the faculty at Broadway Family Medicine until September of 2009. She is now at the University of North Dakota School of Medicine and Health Sciences.