Teaching Hospitals How to Listen
One Woman Struggled to Convince Administrators That Staff Responsiveness -- or Lack of It -- Affects Patient Outcome
By Susan Okie
My friend Sylvia Stultz, who died of cancer in June, was a clinical psychologist whose passion was teaching social skills to autistic children. Until she became sick with a rare sarcoma, about two years ago, Sylvia ran therapeutic groups for such kids, helping them learn how to make friends, notice interpersonal cues and carry on ordinary conversations.
Sylvia had enviable social skills: Although she lived alone, she maintained close connections with a large network of friends and relatives who supported her throughout her illness. Her directness and sense of humor endeared her to her doctors, nurses and other caregivers, calling forth their best efforts on her behalf.
However, as a cancer patient undergoing treatment at several respected institutions in Washington and Boston, Sylvia noticed intriguing parallels between her experiences in certain clinical settings and her work with autistic children. She encountered striking differences in the cultures of the places where she received her care: While some hospitals and clinics seemed to encourage responsiveness and empathy among their staff members, others appeared to foster an atmosphere in which patients often felt ignored and employees often seemed reluctant even to make eye contact. Since Sylvia felt powerless to affect the course of her own illness, she focused her energies, for as long as she could, on a target that played to her strengths: She tried to teach social skills to hospitals.
In January 2005, I accompanied Sylvia to a surgical oncology clinic at the National Institutes of Health's Clinical Center, the famous hospital in Bethesda where researchers study patients with rare disorders and test experimental treatments. Sylvia had a large metastatic tumor in her liver and had been referred to an interventional radiologist to undergo a radiofrequency thermal ablation procedure, in which a needle is guided into the tumor and is used to deliver radiofrequency current that kills the cancerous tissue. As instructed, she reported to the clinic at 10:15 a.m. A nurse took her vital signs, and we settled down to wait -- and wait. As the morning wore on, other patients straggled in until the waiting room was full. Staff members could offer no estimate of when she would be seen and seemed surprised that we asked. We munched on crackers and watched the clock. At 3:30, Sylvia finally met the specialist and his medical team.
Sylvia felt privileged to be treated at NIH, but that didn't stop her from speaking out -- in her characteristically polite but direct style. When the radiologist finished describing his treatment plan and asked whether she had questions, she shot back, "Yes. Why do you keep your patients waiting for five hours?"
The doctor was contrite but said that he had no control over scheduling. So, a few days later, Sylvia sent an e-mail message to the Clinical Center's director, John I. Gallin, describing her visit.
"As a psychologist and health-care provider myself," she wrote, "I wonder if there may be ways in which my experiences could alert you to the possibility that sometimes 'the system' underestimates the tremendous sense of vulnerability of your patients. We are sick, grateful and afraid. Waiting for hours is not just inconvenient; it is frightening and disempowering -- downright unhealthy. . . . If we and the other patients knew that the system was set up respectfully and if we had been given information, options or apologies, the situation would have felt entirely different."
Gallin reacted admirably. He called a meeting of department heads to review the management of the center's specialty clinics. He promptly apologized to Sylvia, writing, "I believe that the wait times you described should be tolerated under no circumstances."
On her ensuing visits to the NIH clinic, Sylvia found that the wait time had shortened dramatically. She felt so empowered by this response that she was convinced it improved her ability to fight her cancer. "It has been especially difficult for me to develop healing images about the liver," she wrote in a e-mail. "The tumor is growing so fast and seems so impervious. Then I thought of . . . sending precise, fierce probes into a troublesome NIH. This made it so much easier to think of the tumor as shakeable."
Gallin said in an interview several weeks ago that as a result of Sylvia's intervention, he has made reducing patient wait time a priority. "She taught us a lot," he said. "She really galvanized the issue for us. . . . It wasn't really obvious to me how much of a problem it was until she sort of hit me between the eyes with a two-by-four."
Gallin abolished "block scheduling" -- the system of having the day's patients all report to a clinic at the same time -- and replaced it with individual appointments. He said patients are now asked to keep a log of how long they wait to see a doctor or to have a test or procedure, and to turn in this information to their clinic's head nurse. Department and section heads are now required to take steps to reduce wait time and must report annually on their progress.
Beyond Their Expertise
Sylvia's liver treatment was successful. However, during the next few months, the sarcoma spread like a western wildfire, flaring up in one organ after another. To cope with a pelvic recurrence, Sylvia traveled in May 2005 to Brigham and Women's Hospital in Boston to have a procedure called brachytherapy, in which radioactive needles are implanted into a tumor. She would have to lie immobilized in a lead-lined hospital room for three days. Because she would be radioactive, nurses and visitors would be able to spend only a few minutes at a time in her presence: She would be almost entirely alone. Although she joked in an e-mail, "I'll be like Kryptonite, with the power to disable Superman," Sylvia was terrified.
During her stay at the hospital, several unrelated events combined to magnify the anxiety and pain that she endured. Her iPod, which she had counted on for distraction, was lost or stolen during the transfer from admissions to her room. An anesthesiologist belatedly changed the planned method of pain control after she was already on the operating table. Later that night, she awoke with intense pain and called for a nurse, only to wait two hours for a response because, as the nurse later explained, she was "busy with an emergency."
"I wondered why I was not an emergency at this point, and sobbed as I watched the clock," she later recalled.
She was discharged with painful bedsores caused by immobility and was sent home without knowing how to take care of them.
Sylvia later said she found this the most traumatic of her many hospital admissions. For weeks, persistent hip pain and muscle weakness were exacerbated by what she called a "fog" of anxiety.
On a return visit to Boston in September, she tried to discuss her lingering concerns with her radiation oncologist but felt the doctor seemed uncomfortable. "She dropped some defenses at the end," Sylvia wrote. "She was affected when I 'put it into words.' She said there is a 'culture' at the hospital, 'I don't know where it comes from.' "
Although weakened by her advancing cancer, Sylvia tried to address that culture. "I am concerned that the 'system' was unresponsive to my emotional needs and my doctor was put in the position of not being able to protect me," she wrote to Michael Gustafson, vice president of the Center for Clinical Excellence at Brigham and Women's/Faulkner Hospitals. "Somehow, a grasp of me as a person and a collaborator was missing too often."
The hospital's official response was guarded; Gustafson referred her report to an ombudsman, or patient advocate, who investigated her complaints and sent her a written report several months later. Although Sylvia might have preferred a frank, face-to-face discussion, by then she was too frail to travel to Boston. She said she was glad, nevertheless, to learn that her letter had prompted some changes.
Kevin Myron, a spokesman for Brigham and Women's Hospital, said Sylvia's experience was regrettable. "It's someone's personal experience," he said. "We can't change that. But hopefully, it means that things will improve in the future."
Setting a Standard
Sylvia's gold standard for how hospitals should function was an experience she had soon after her sarcoma was diagnosed -- an inpatient admission for radiation therapy at Sibley Memorial Hospital, near her home in the District. Looking back on that hospital stay, she acknowledged that she was healthier and less psychologically vulnerable at that time than during the later stages of her illness. Nevertheless, she insisted that the head nurse for that unit -- a woman whom she called "the nurse with the white hat" -- had established a system that made patients feel confident that their needs would be met.
The most important rule was that if a patient rang a call button, the staff member nearest to the patient's room -- whether a nurse, a technician or a janitor -- would respond immediately. The patient's request would then be relayed to the appropriate person. During her stay on this unit, Sylvia said, she always knew that she would be heard. She was sure that feeling calm and safe improved her body's response to the cancer treatment.
Sylvia had many stays on other units at Sibley, and things did not always go so smoothly. When problems arose, she discussed them promptly with her caregivers -- sometimes with surprising results. A friend who visited her regularly in the hospital recalls a time when Sylvia was in severe pain and a nurse asked her repeatedly to quantify her discomfort on a scale of 1 to 10. She finally answered, "Eleven." The nurse snapped, "The scale only goes to 10. I am a nurse. Answer the question."
The following day, when the same nurse entered the room, Sylvia took her hand, looked her in the eye and said, "Yesterday you were rude to me. I was in a lot of pain and only wanted to convey that to you."
The nurse grasped Sylvia's other hand, sat down on her bed, and said, "It doesn't have anything to do with you. I'm sorry. It's just the way I am. I have cancer and have to take a lot of pain meds."
Even in the final months of her life, Sylvia's old spark would return whenever she talked about the need for health-care workers to show, by eye contact and body language, that they are listening and responding -- transmitting the same social cues that she had always tried to teach to the children who were her patients.
Getting that response, she said, "lets me know that I'm a human being."
It's like giving a heroin addict the keys to the props trailer for the French Connection.
