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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.

In my last post, you met Catherine, a young woman who came down with a stomach bug but was ushered through numerous blood tests and a CT scan, only to be even more confused than ever. You saw how shared decision-making needs to begin with the process of establishing a partnership for shared diagnosis, because diagnosis is the first and most critical step to your medical care.

Here are 5 steps to partner for your diagnosis:

#1. Find a physician who agrees with shared decision-making for diagnosis. Your doctor should listen to you, care about you, and feel comfortable—even seek out—involving you as a partner in the decision-making process. You will quickly see whether your doctor gives lip service to the partnership or really believes in it. Someone who really believes in it will work with you and welcome and actively solicit your suggestions. Someone who isn’t will quickly exhibit signs of impatience and defensiveness. If you are always respectful while asking questions, your doctor should welcome the input rather than feel challenged by it.

#2. Express your intentions to your doctor. Doctors aren’t mind readers, and are probably conditioned to patients being passive participants in their healthcare. No matter if this is a new doctor, or one that you’ve had a relationship with for a while, state clearly at the beginning of your visit that you want to be involved as a partner in your own decision-making process. Ask to share in your doctor’s thought process about your diagnosis. Inquire about what it is he/thinks you have. Say that you want to be involved in figuring out what you have and what to do. If your doctor does not respond positively, perhaps it is time to look for another care provider.

#3. Help your doctor help you. Most diagnoses can be made by the story—the history of your illness—alone. Yet, one of the most frequent complaints patients have is that their doctors don’t listen to them. No doubt, there are limitations and pressures on the doctor’s time, but neglecting to listen to you will result in misdiagnoses. You can help make sure your doctor listens to you by telling agood story. Rehearse it in advance and make sure you tell a concise version. Begin at the beginning and proceed chronologically. Provide context, such as how it affected your life. Use your own voice instead of what you think is medical jargon. Write down key details so you don’t forget, and practice the delivery. Knowing how to convey your story effectively is a key part to helping your doctor help you get to the right diagnosis.

#4. Make sure you understand every test that is ordered. Every test should be done for a specific reason. Study after study shows that there is no role for the “screening” test: doing “basic labs” or a “screening CT” is like fingerprinting the entire city to search for a suspect, because it’s ineffective and likely to end up with confusing results. Not to mention that every test, even the basic blood draw, has potential harms (a CT has many more potential harms, including increasing your lifetime risk of cancer). If your doctor asks for lab work to be done, ask what blood work is requested and why. If your doctor asks for a CT scan, x-ray, MRI, etc, ask what it is looking for. How is the test going to change your management? Is it necessary? What are the possible harms? What are the alternatives? These are the same questions you would ask if you were deciding whether to treat and how to treat your illness, and making the diagnosis should be no different.

#5. Make decisions together, always with the diagnosis in mind. A test or procedure should be done only if it helps make your diagnosis; otherwise, what’s the purpose? The treatment should be targeted to the diagnosis; otherwise, what is it being done for? Perhaps there are two or three possible diagnoses; what is going to be done to try to narrow this down? What’s the natural course of the illness; what should you expect and what can you do to start feeling better? You need to be proactive in thinking through and asking questions, and if you have a willing physician (as you should), you should have all of your questions answered. Keep asking if your diagnosis does not make sense to you.

A critical component of shared decision-making is to work with your doctor to figure out your diagnosis. Focusing on this first, key part of your care will have transformative effects on your health.

Imagine, how different would it have been if Catherine were involved in the very beginning with her diagnosis. She would have been able to tell her story and ensure her doctors listened, which could have led to the diagnosis without any tests at all. She would have avoided an unnecessary CT scan and unnecessary blood work, along with the all the potential harms and confusion of the tests. She would have received her diagnosis and understood what it is and how to treat it. She would have gone home, reassured and feeling better.

You may be dissatisfied and frustrated by the way your medical care is today, but there is a way to make it better. You hold the key to transforming your health. Try it on your next doctor’s visit, and focus on shared decision-making towards making your diagnosis.

Tried it? Have suggestions? I welcome your comments!