Recently, I have had to sit in medicine clinic as a patient. It was part of the allergy shot process; I was asked to wait to make sure I did not have a severe reaction after the injection. As I sat reading my journals for the required 20 minutes, I would occasionally overhear conversations or observe patients. Sometimes, patients would engage me in a conversation as they waited, without any knowledge of my institutional role or professional identity, and I tried to retain my anonymity as we exchanged greetings and mutual support. I relate the following two stories of events that occurred one day in the clinic waiting room, not because they were extraordinary but precisely because they were not.
An elderly man arrived for an appointment with his cardiologist. He had white hair and sallow skin, and he sat in a wheelchair with oxygen attached. There were green nasal prongs attached from the oxygen to his face, and I could hear him wheeze from my seat halfway across the room. “Hello,” he said to the clerk at the registration desk. “I am here for an appointment with Dr. X.”
“Name and hospital number,” said the clerk.
“I am Harold Thomas [not his real name] and, uh, my number is 2324 67.”
“Mr. Thomas, we called you yesterday. Your appointment has been rescheduled for Thursday.”
“But I can’t come on Thursday. I don’t have any transportation.”
“Well, we called you and left a message.”
“My phone isn’t working.”
“Well, our next appointment with Dr. X is in three months. I have an appointment open for him on March 18th.”
“March 18th. I’ll be dead by then.”
“Do you want the appointment or not?” The clerk looked at her watch. There were two more people lined up behind Mr. Thomas.
Mr. Thomas sighed, “Someone will have to come and get me.”
“We can call for you. Shall I mark you down for the 18th of March?”
“Yes, OK,” he said, sighing. I watched as he was wheeled over to a corner of the waiting room away from the arrival desk to await his ride back to his assisted living facility.
A few minutes later, a woman who had been sitting across from me asked me a question. She had short gray hair, wrinkles around her eyes, and a barrel chest. She was breathing deeply with an audible wheeze and reading a brochure handed out to her at the registration desk that described end-of-life decisions and procedures. As I sat reading a medical journal, she asked me if I knew what an advance directive was. I stopped reading and tried to decide how to answer her question and how much I should reveal about my own identity as I answered. I decided to remain relatively incognito and answered simply: “I think that is when you write down what you would want done for yourself if you could not speak or communicate. It’s to make sure that the doctors don’t do treatments that you would not want.”
“You mean if I were paralyzed or something?”
“Well, I think it is more about if you can’t talk or think and what treatment you might want or not want, like CPR if your heart stopped or if you could not breathe.”
“Oh, that. I watched my husband die in the intensive care last year. He had emphysema and they had him on one of those machines. It was the breathing machine with the tube that goes in your mouth. He never wanted it, but they gave it to him anyway. That’s what I don’t want. When the time comes, I am going to a veterinarian and have them put me to sleep.”
“I don’t think a veterinarian is allowed to do that,” I said trying to smile and hoping the woman was joking.
“Well, they can’t treat people. There are different rules for people and animals, and different medicines.”
“Well, I don’t want to suffer like my husband did. I got emphysema too and I just want to go to sleep when my time comes. That’s how it was when we had to put our dogs down, very peaceful. The Good Lord will take me right there at the vet’s office. Can I write that down in this book?”
“Well, you should really talk with your doctor about this, or the nurse. They could give you much better advice than I can.”
“They never have time to talk. Anyway, they are doctors and they only want to do tests on me, and I get a different doctor every day. I believe in God and I want to leave something to my kids, not have it all go to the doctors with all those bills I would get. I love my kids and my grandkids. I want to leave them something. So how do you fill this thing out?”
I looked at my watch. I folded up my journal self-consciously. It was time for me to go. The time for the allergy shot observation was over and I had a meeting that was supposed to start in 10 minutes. I knew that helping the woman fill out the form would not be easy. There would be more questions and after each of my answers more questions. End-of-life issues are not simple even under the best of circumstances. As I considered how to help this woman, a nurse called my name. I got up and looked at the woman.
“Oh, that’s you they’re calling. You better go or they will cancel you out just like this poor man in the wheelchair. Thank you for listening to an old woman’s chatter.”
I nodded, got up from my seat, and went in to show the nurse the effects of my shot, intending to continue my conversation about end-of-life care with the woman later. When I came back to the waiting room the woman was gone and only the old man in the wheelchair waiting for his ride was still there in the corner.
My purpose in relating these two stories is not to criticize the hospital or the clerks and nurses in the clinics. Rather, it is to highlight a problem that requires urgent attention: how to puts the patients’ needs at the center of our health care system, like the sun in our solar system. We need to explore how each of us can contribute to a culture that identifies the patient’s needs as our core value, and how we can teach this cultural value to our students, residents, and colleagues, who are part of the health care team. Berwick1 eloquently and forcefully advocated patient-centered care as the foundation of quality, regardless of the other important technical dimensions of care that affect outcomes. He expressed three maxims: “The needs of the patient come first. Nothing about me without me. Every patient is the only patient.” Although these statements may appear overly simplistic, they provide a good foundation for actions that each of us can take to change the cultures of our institutions to be more patient-centered. With Berwick’s perspective in mind I offer four suggestions:
Do not be afraid to intervene. When we are aware of a situation in which a patient is not being served well by our health system, we need to confront the problem and be an advocate for the patient. Many times we hesitate because we realize that we do not have all the information and do not want to assume that we know what is best. However, we can certainly ask patients whether they need help in navigating a difficult situation. I certainly could have gotten up and said something to the clerk who was informing the elderly man of his canceled appointment or asked the patient whether he needed help. But I was unprepared for and uncomfortable about taking such a step. If the upper leadership of academic health centers would take such steps more often, I believe we could empower all members of our organizations to behave similarly to begin creating a culture change. Leape et al2 describe five steps needed to transform our health care culture: transparency, multidisciplinary teams, patient participation in all aspects of care, health care worker empowerment, and changes in medical education to prepare our workforce for this new culture. We can use these steps to remind ourselves of the many opportunities we have to intervene for patient-centered care.
Teach patient-centered care when supervising students and residents. We need to teach and role-model a patient-centered culture through our conduct of rounds and supervision by attendings. Students currently find their clinical education moving them away from patient-centered values.3 However, this could change if the emphasis of medical education changed, even transforming the culture of the institution to be more patient-centered.4 Lectures about patient-centered care will carry little weight if the daily culture does not align with them. Medical education can be a driver of culture change toward patient-centered care through the development of new curricula and changes in emphasis in the clinical teaching environment. For example, if graduate medical education produced an awareness and commitment to patient-centered care in our new graduates, their annual diffusion into the health care delivery system could have a rapid and profound impact on the cultures of their new institutions. To do this will require faculty with the skills and attitudes to effectively influence our residents. In this issue of Academic Medicine, Clay et al5 describe the process of faculty development during the transition to a patient-centered model of care. They explain the challenge to faculty of learning new skills while attempting to teach them to their students.
Demonstrate patient-centered decision making. Issues such as end-of-life care that involve an examination of individual values, societal resources, and medical care uncertainty provide the opportunity for the physician and patient to participate in patient-centered shared decision making. Fostering the ability of a health care provider to conduct a discussion of complex medical issues should be brought into the mainstream of health care education. At times the assistance of ethicists or clergy may facilitate such discussions. As advocates for our patients, we must be able to understand our patients’ values, translate medical concepts, and engage in discussions that are respectful of a broad range of values. We must also be familiar with resources to assist in areas outside of our expertise. Our students should be able to understand how to conduct a difficult patient-centered conversation with the patient and communicate effectively with other members of the interprofessional team. We must develop materials to assist patients at all medical literacy levels so that they can fully participate in decisions about their lives. Meier6 argues persuasively that palliative and hospice care can not only be patient-centered but also can add value to our health care system by improving quality and reducing costs.
Invest in partnerships with patients and patient advocacy groups. By doing this, we will better understand their perspectives and incorporate them into our clinical services and educational programs. Gallin et al7 in this month’s Academic Medicine describe the continued growth and evolution of patient advocacy groups and voluntary health organizations that raise money and provide a voice for a variety of patient groups and their concerns. Some of these organizations focus on specific diseases, like cancer or neurological diseases, and are a major source of information for patients; others are a source of funding for research and education. Still others provide political advocacy for health issues with elected officials and governmental regulatory agencies. Gallin et al describe the opportunities for collaboration between these groups and academic health centers.
Patient-centered medical care has been identified as one of the attributes of high-quality medical care and an integral part of the future education of medical students and residents.8 The creation of an institutional culture that puts the patient’s needs ahead of all other priorities requires leadership, and often requires changes in the payment and other incentive structures of our institutions.9 Changing institutions can be difficult, but each one of us can be change agents today by becoming good observers of the care around us and advocates for patient-centered care in our institutions. And if we need any additional motivation, we should consider that one day it will be our friends, our families, or ourselves who will be sitting in the waiting room.
David P. Sklar, MD
Editor’s Note: The opinions expressed in this editorial do not necessarily reflect the opinions of the AAMC or of its members.