The man on the gurney could barely speak. He had oxygen connected to a tracheostomy tube and his voice was a whisper. The ambulance attendants told us that they picked him up often and usually transported him to another hospital, but today that hospital was full. The man had amyotrophic lateral sclerosis (ALS), a neurodegenerative disease that had progressed to the point that he could not move any muscles and was dependent upon a ventilator to breathe. He had recently been hospitalized for pneumonia and been discharged a few days before the current visit. Now he was having problems breathing again and his wife had called the ambulance to transport him to the hospital.
I was working with Anita, a new intern (name and identifying details changed), and we discussed the information the EMTs had given us. Anita attempted to supplement that information with a history from the patient. She asked the patient if he was in pain.
“No,” the man whispered.
“Are you having any trouble breathing?”
“No,” the man said.
“So why did you want to come here?”
“I don’t know,” the man whispered. “I want to go home now.”
Anita looked at me. She was not sure what to do. “OK, Anita,” I said. “It sounds like you have reached a dead end. Is there anyone else who might be able to give you answers to your questions?”
“His wife?” she said.
The ambulance crew heard our exchange. “I think the wife is driving in to the hospital,” said one of the EMTs. I nodded.
“All right,” I said, “why don’t we examine the patient and see if there are any old records of his care. By then maybe his wife will be here.” Anita proceeded to examine the man from head to toe, and I verified her findings.
“He has no movement of any muscles,” she reported. “I think I would like to order a chest X-ray and some blood tests,” and she rattled off 10 different tests that she hoped would clarify the man’s problem. She tried to engage the patient in a discussion about his willingness to have all of the tests and got only a soft “Okay.” As we were reviewing the X-ray the nurse informed us that the patient’s wife had arrived. I nodded and told Anita that we probably could leave the patient with the nurse for now, hold off on any tests, and go and speak with the man’s wife in the consultation room.
When I saw the man’s wife I was surprised. She looked at least 10 to 15 years younger than her husband and her clothing and demeanor were a marked contrast to her husband’s. She was stylishly dressed in a well-tailored gray outfit wearing white and silver pearls around her neck. We introduced ourselves and I mentioned that Anita was an intern working with me.
“Oh, he always likes students. He was a teacher before he got sick. How is he?” she said.
“His vital signs are okay and his X-ray shows a resolving pneumonia. Maybe you could tell us what prompted you to call the ambulance,” I asked.
“Well, he was awake all night. He barely slept. So I was up too. I am exhausted. He seemed to be having trouble getting enough air.”
“Was this a change from how he has been? How is he now compared to when he was in the hospital?” I asked.
“Oh, I think he’s much better now. He is eating and watching TV.”
“Really? So he is able to eat. And what else can he do?”
“Well, I feed him. He can’t move his hands. But he can swallow the food. Otherwise, he can’t do much. Just eat and watch TV. He loves to watch sports.”
“Really, what sports?”
“Mostly football. He used to coach his school football team.” As we talked and more details emerged, the man, who had previously been defined by his ventilator and immobile body, began to take shape and come to life. He was a teacher and coach, a husband, a writer, and a father of two children. He had loved to hike and camp in the wilderness.
“What else do you do with him besides watch television?” I asked.
“I read to him. He has a lot of books. He likes short stories because he can stay awake for the entire story. Now I am reading short stories by Jhumpa Lahiri. He likes them. He mentioned that he might be someone she would write about.”
“Well, her stories are often about difficult circumstances, and even though the endings are not such a surprise, there is often something unexpected that happens. He feels like he could be in one of her stories, with what has happened to him,” she explained. We nodded.
“So what caused you to bring him here today?” asked Anita.
“Well, he got scared. And so I got scared too. He was afraid he was going to die.”
“Yes, he has a very serious condition. Have you discussed end-of-life issues with him at all? He seems very sick and weak,” I said. “ALS does not get better. Sooner or later…” I trailed off letting her finish my thought.
“I know,” she said. “We have talked about hospice and palliative care. But he wants to live. I would not want to live like that,” she added. “But he does. So what can I do?”
Anita and I looked at each other. There was no obvious answer to the question. I took a deep breath. “These are his decisions.” I said. “It doesn’t matter what I would want or you would want for ourselves. I might not want to live as he does, but it is up to him,” I said. “But even though he wants to live, that may not be possible. We will do what we can.”
“Can I see him?”
“Yes, please follow me.”
We took her to her husband. She stroked his forehead and then clasped his hand. “He seems much better,” she said. “I think you can send him home now. Thank you.”
I nodded and walked out of the room with Anita. “We didn’t do anything for that man. Did we?” she said.
“I don’t know. We honored his wishes. We listened. We got to know a little about who he is. We get to send him home, which is what he wants.” Anita and I discussed what quality of care meant for our patient and his wife. “Probably what was most important was listening, reassuring him, and honoring his wishes,” I said. “It is what we call patient centeredness, putting the patient’s wishes in the center of the various considerations about what treatments to offer. We don’t always remember to do that in the emergency department, because of all the chaos, noise, and quick decisions,” I added.
“Isn’t this somewhat like a short story?” said Anita. “Like the Jhumpa Lahiri stories in particular. I was an English major in college and we read a lot of her short stories. She was one of my favorite authors. A good short story needs to have the character in the center or the plot will not mean very much. We have to care about what happens to the main character or the story will fail.”
I smiled at the way Anita had put together our patient’s visit, the concept of patient centeredness, and her analysis of what makes a good short story. “Yes, exactly,” I said. The analogy made sense, and the idea that our patient and his wife would return home to read a short story was somehow comforting as I considered the man’s prognosis.
I realized that the voices of patients are easily drowned out by all the technology we use to monitor and treat them. The insistent sounds of the alarms demand our attention, and the patient can soon become the sum of all the data we are collecting. We need to remember that there is a person there even if the voice is only a whisper, as was the case with our patient. This loss of the patient’s voice occurs not only in the hospital. It can also happen in journals like ours, as we strive for articles with scholarly and methodological rigor that can survive peer review. How often do we read what patients think of medical care and medical education or their ideas for how we could improve the preparation of our future doctors?
In this issue of Academic Medicine, Jeannine English,1 president of the AARP, shares what she hears from her members about what they would like from the medical care system.
Individuals should feel empowered, aware of their choices, and connected to their health care providers through meaningful communication and understanding. They deserve to feel that their personal dignity and their wishes are a top priority. They should be made to feel that they, along with their caregivers, are members of the care team.
Also in this issue Beverly Johnson,2 president and CEO of the board of the Institute for Patient- and Family-Centered Care, relates several difficult personal experiences with the health care system. These experiences illustrate the need for more respectful communications between patients and families and their health care team. She also highlights opportunities to integrate patients and families into medical decision making and medical education that include faculty development and curricular changes that could augment the patient’s voice in the important discussions and decisions about their care.
Patients’ voices remind us that while medical education typically focuses on students and their needs, there is a larger purpose for medical education: service to patients and the community. Discussions of the problems that patients and patient advocates describe, based on their personal experiences, must be integrated into our education system at all levels, from the medical student selection process to the continuing professional development of practicing physicians. Fortunately, I have noticed a greater emphasis, in many of our education and clinical initiatives, on the centrality of patient and family involvement. A recent report from the National Academy of Medicine3 on improving diagnosis in health care made the following recommendation:
Health care professionals and organizations should partner with patients and their families as diagnostic team members and facilitate patient and family engagement in the diagnostic process aligned with their needs, values and preferences.
This recommendation indicates a major shift in the framing of the diagnostic process by including the patient and family as partners in the gathering of information, the analysis of the information, and the decisions that result. While there will always be a place for the individual expert diagnostician who can recognize subtle clues in a patient’s history and physical examination, there is a growing recognition of the role of families and patients in contributing to a diagnosis and plan for a medical problem. Branch4 in this issue tells a story describing how he attempts to integrate families and patients into his patient care rounds with students and in so doing influence their behaviors and attitudes about providing patient-centered care. Headrick et al,5 also in this issue, go a step further. They describe a model—the Exemplary Care and Learning Site model—that incorporates patients’ and families’ perspectives about improvement of clinical quality and education. In their model, patient-centered quality improvement informs medical education, which then further improves clinical quality in an iterative feedback loop.
Berwick6 has described the history of inclusion of patient centeredness as one of the six attributes of quality; these attributes were defined during the process sponsored by the Institute of Medicine that led to the creation of the landmark publication Crossing the Quality Chasm: A New Health System for the Twenty-First Century.7 He noted the struggles to decide what it means to be patient centered and the concerns of some participants that patients are not always well informed and might request an inappropriate test or medication leading to a conflict with the physician’s duty to provide effective treatment. Ultimately, this struggle was resolved with a rule, “The patient is the source of control.” Berwick goes on to reveal his deep anxiety about his becoming a patient and losing control.
What chills my bones is indignity. It is the loss of influence on what happens to me. It is the image of myself in a hospital gown, homogenized, anonymous, powerless, no longer myself.
How can we prevent this loss of self in a health care system that is increasingly dominated by technologies that create barriers between the patient and the caregivers? I think we can start by encouraging patients to tell their stories and listen to what they say. Imagine if we had to know and remember one important fact about a patient’s life—place of birth, first job, favorite sport—for every lab value, radiological study, or abnormal physical finding we recorded in the medical record. How might such information change our understanding of our patients?
To foster such understanding, we must provide our patients the time and priority to speak with us about what is important to them without interruption. Beckman and Frankel,8 in a study done over 30 years ago, noted that physicians interrupted patients who were describing a problem after an average of 18 seconds. I suspect that under current time pressures for physician productivity, interruptions of patients occur even earlier and with increasing frequency as physicians attempt to direct conversations to the data that they need for efficient decision making and documentation. While physician time is precious and affects compensation, it is also a critical resource needed for a patient-centered relationship to develop. Dean et al9 have described the importance of rapport building and an understanding of illness context as critical elements that should accompany the information exchange between physicians and patients. All of this requires time and a recognition that the use of the time for patient-centered care is worthwhile. Not all situations lend themselves to unlimited conversation; major trauma requires swift interventions without any delay. But most medical care can accommodate a conversation and time for reflection by patient, family, and physician. Had I not been able to speak with my patient and his wife about their life before ALS and the current pleasures in their life, I might never have appreciated how meaningful and precious the time left would be for them. That information likely affected my recommendations for care.
Patient-centered care is not dramatic like performing CPR and watching the monitor convert from asystole to a normal sinus rhythm. But as my intern Anita noted, it is the character within a short story that makes a short story interesting and meaningful, and it is the relationships with real people and real lives that will make a career in medicine sustainable and help us create the health care system that we would each want for ourselves and our families.
In the coming months we at Academic Medicine plan to publish additional patient and family perspectives to help foster appreciation of the importance of patient-centered care in our complex health care system and its potential to help us reconsider our priorities in medical education.