Growing up, I always thought of hospitals as having a certain mystique that was impenetrable to the outside world. White-coated figures paraded through long hallways that had a permanent antiseptic smell. People spoke in hushed tones except for the loudspeaker that blasted information about “codes”: real emergencies! There were many doorways marked “do not enter” and “restricted access”, where I imagined miracles to happen: real-life operations, cures, magic! As a child with severe asthma, I visited this world often, and dreamed about the day I would penetrate this mystique and be among the white-coated magicians on the other side.
As a medical student, I continued to hold the medical world in great awe. All that changed the day my mother became a patient. I began to see firsthand not only how difficult it is to navigate the healthcare system, but also how scary and unwelcoming the hospital can be. After my mother’s extensive cancer surgery, she was supposed to be recovering, but every few hours, someone would come in and turn on all the lights. There were loud beeping noises all the time; soon, she lost track of day and night. Her providers came to check on her at their convenience, but when she asked for help, they rolled their eyes, dragged their feet, and sighed.
For fear that she would be perceived as a “trouble patient”, she—and I—began to hold everything in. This extended to her oncologist, where she often didn’t mention that she had concerns with his recommendations, and certainly to her visits to the hospital. There was a particularly unpleasant ER experience where she, then a chemo patient, lay freezing in the hallway for five hours. After she got yelled by a nurse for walking herself to find a blanket, she decided that she just wasn’t going to the hospital any more. “Every time I go, I feel like I’m begging them, like it’s a huge favor to get care,” she told me. “I can’t do it any more.”
As a medical student, I was torn and conflicted. I was finally entering this world that I had so long revered. But I also saw the serious problems with our healthcare system and how it hindered care for the person I loved most. I’m not even talking the costs of health or healthcare disparities, but even more basic issues. Such as, why is that caring for patients is doctor-centered and not patient-centered? Why is that hospitals are designed for doctors and nurses, but not for the people they are supposed to serve?
Since my mother’s unfortunate experiences, there have been some positive changes. Patient- and family-centered care movements are growing across the country. Hospital systems are recognizing that in order to deliver first-rate care, they must value the patient’s experience. Dr. David Feinberg, CEO of the UCLA health system, talks about how he spent the first several months on the job listening to patients. What he heard was so shocking, so imperative, that he challenged his 18,000-member staff to redesign their entire vision of care delivery. For example, he made sure that patients were part of every committee. “How can we deliver patient-centered care if patients aren’t part of the process?” he says.
Changing long-entrenched systems is by no means an easy task. There are some who believe that the mystique of medicine is important to preserve. In some ways, this might be true—there is something inherently different, inherently special, about medicine and how doctors should view their commitment to patients and society. As a senior resident physician completing my training this year, I believe more than ever that medicine isn’t just a “job”, but rather a special kind of calling.
Which makes it even more imperative to change the disconnect that hospitals have with patients and their needs. We as healthcare providers need to make it our top priority to make sure that our practices are truly patient-centered so that we can work with our patients to focus on our common goal of healing and improving health and well-being.