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Steve is a 52-year old father of four. Soon after losing his job as a carpenter, he begins to have sharp stomach pains. His primary doctor examines him for a few minutes and then sends him to specialists: a GI doctor, who performs an endoscopy, and a cardiologist, who performs a cardiac catheterization. Both tests are normal, but he develops an aneurysm and a bad pneumonia, and has to spend the next week in the hospital. His medical bill is over $75,000, and Steve has to declare bankruptcy—all because of tests he never needed to begin with.


Sandy is a 46-year old grade school teacher who has been feeling unwell for a couple of months: she’s short of breath, feels tired all the time, and has a cough that wouldn’t go away. She goes to her doctor, who tells her it’s just a cold. Her symptoms get worse to the point she can longer go to work, and her doctor diagnoses her with depression and prescribes her some Prozac. That doesn’t help, so her doctor prescribes her Valium for her “anxiety”. It’s not until nearly a year later that she is finally diagnosed with breast cancer—cancer that, by then, has spread to her livers, her lungs, and her brain.


Science has brought about many importance advances, but also contributed to costly, harmful, and dehumanized medical care. Of the $2.7 trillion our country spends on healthcare every year, 30%--over $700 million—is wasted on unnecessary tests and treatments. Two out of every three families who declare bankruptcy do so because of excessive medical bills. Overtreatment isn’t just expensive, but it’s bad care. As Steve experienced, every intervention—even a simple blood test—has potential side effects. This doesn’t mean to never get tests, but rather to be certain that the test or treatment is needed.

At the same time medical costs are ballooning, healthcare has become more fragmented and less coordinated. The idea of having “your” doctor is becoming a relic of the past, and patients are shuttled to more and more specialists who have their own incentives. And medical care isn’t becoming safer: according to the Institute of Medicine, 100,000 people die every year because of medical error. The number one cause of medical error is misdiagnosis, which is evident in Sandy’s case: if the diagnosis is wrong, then the tests and the treatment will be wrong as well.
Politicians and administrators have proposed many solutions to these current system ailments. They are all based on the premise that more has to be done. More checklists. More tracking. More accountability. More technology. While some of these efforts may be beneficial, there is a far simpler and more fundamental reform that is needed: for patients to tell their story, and for doctors to listen.

The story is a core element of all human cultures. We all know what makes a good story: it is personal; it engages emotion; it has meaning; it grabs your attention from the start. Understanding each other’s stories is the basis for establishing connection, relationship, and trust. In medicine, the story is key to sound medical care. Studies have shown that 80% of diagnoses can be made just based on the story alone. That’s better than any test or combination of tests!

Listening to your story is also a critical aspect of healing. If your doctor didn’t listen to you, how can you be sure that he understood what you have, much less how you can develop a trusting partnership? Yet, doctors are listening less and less. A 1984 study found that patients are interrupted after just 18 seconds. A more recent study found that patients now have just 10-12 seconds to speak.

Over the last year, I have traveled to 48 cities across the U.S. to talk to people about their healthcare. Nearly everyone had a story of how not listening led to a bad outcome. That’s how I met Steve. Like many others, Steve considers himself to be lucky to be alive, but is he so lucky? He feels no better after having gone to his doctors, and now has lost his savings and his home. He suffered complications from tests he never needed in the first place, and he has no trust that doctors will do the right thing for him and his family the next time.

As for Sandy, I know her well too. You see, Sandy was my mother. I was a medical student when she called me to tell me about her symptoms and how her doctor wasn’t listening. I knew that something was wrong. My mother was an immigrant who worked hard all her life, who never complained about anything. Yet, I didn’t know how to help her communicate with her doctor so that he would really understand the gravity of her situation.

It took me a decade—first as a caregiver to my mother, and then as a practicing physician and patient advocate—to figure out that the story is absolutely fundamental to medical practice. Indeed, it can save your life.

Imagine, how different would it have been if Steve started out his story to his doctor by talking about his financial concern and his recent unemployment, how it was making him anxious and have stomach pains. How different would it have been for my mother to say that she’d never sought medical care for anything, but now she was feeling so poorly she could barely get out of bed any more.

And how different would it have been if their doctors listened. Some argue that doctors don’t have time to do so. While doctors are under more time pressure than ever before, it doesn’t take any longer to listen—in fact, it saves the time that’s wasted instead on asking endless close-ended questions and ordering unnecessary tests. Others insist that these tests have to be done because of fear of malpractice. Yet, the number one cause of malpractice is lack of communication, and patients should not have to pay the price for doctors’ fear.

I wish I learned this critical lesson a decade earlier. Not a day goes by that I don’t think about how things could have been different if my mother and I knew what I know now. As a physician and medical educator, I teach my patients and my students that what will really change medicine isn’t the latest IPhone app or newest genetic test, but rather a return to medicine as a healing art.

This requires action by both patients and doctors. Patients, tell your story. Know what goes into a compelling story. Practice it before going to your doctor, then make sure your doctor hears it. Doctors, know that you have to listen. Not just type on your computer and nod your head, but really listen.

Ultimately, transforming healthcare doesn’t require more politics or more technology. Rather, it requires refocusing on the most basic part of ourselves—our story and our human connection. This revolution, the low-tech revolution, is the real solution to healthcare reform.

This is a special guest post from contributor Marcela De Vivo. 

One month ago, my son had major hip surgery at a major children’s hospital in southern California. I was so pleased when he came out of surgery without any complications.  “The worst is over,” I thought.

Little did I know that the worst was about to begin.

The day after his surgery, I noticed Nathan’s vital signs were erratic. He looked a little bit too pale and sluggish. I mentioned my observations to his nurse, who called the doctor. I requested for them to draw blood and look at his numbers. The doctor did not listen. No blood was drawn, and my son was left alone to continue his “recovery”.

The following day, Nathan wouldn’t wake up. Again, I told the doctors my concern and asked for blood work, but was once again ignored. As the day continued, my son became more and more pale. His heart rate was consistently elevated, and his respiratory rate became lower and lower. Then, it happened—his oxygen saturation dropped below 70 and he turned blue. Doctors rushed in and finally they realized that something was seriously wrong. 

This time, they drew his blood. Sure enough, the results showed that he was severely anemic. He had lost a lot of blood during surgery and needed a transfusion. Fortunately he recovered and no major damage resulted. 

This experience highlights a lesson I learned long ago as a mother of a severely disabled child: advocacy is KEY. This is just one of many lessons I’ve had the opportunity to learn. I’ve learned to find ways to help my son engage with his environment, to allow him to participate with other children his age, and to speak up for him against a school district that thinks him “unteachable.” 

I’ve learned, too, that your role as a caregiver is fundamental in the physical and emotional well being of the person you are caring for. Learning to be a better caregiver can help reduce the inherent stress that comes from so great of a responsibility. A good caregiver cares about the dignity, welfare and feelings of the recipient of the care.

Here a few ideas I’d like to share with you that you can improve your experience as a caregiver, as well as the experience of the person you are caring for: 

Patient Care

Do treat your patient/loved one with respect and dignity. Although your patient/loved one may revert to childlike behavior, he/she always needs to be treated as an adult. It could be demeaning to them to be treated as somehow lesser as a result of symptoms from the illness. Treat them as you would want to be treated yourself if you were receiving the care.


Don't assume that the care-receiver has nothing to contribute. Again, always treat your loved one with respect. He or she may be disabled in some ways, but that is not to say that they are useless and helpless as well. Even if they are not able to do much for themselves, give them every opportunity to cooperate in their own self-care. My son is unable to speak, but is able to answer yes by blinking and no by shaking this head. Through this rudimentary method of communication, we give him as many choices as possible: do you want this shirt or that shirt? Do you want to draw with this color? Watch that movie? This simple communication technique gives him control over his environment and the opportunity to engage with us.

Do engage in physical contact. Many of the ill, infirm or elderly who need care experience less and less human contact, especially if the condition continues for a long period of time. A hug, pat on the shoulder or light touch on the arm can improve the patient/family member’s mood and outlook.

Don’t exclude the patient during conversations. Even if the primary decisions are not made by the patient, direct questions and comments should be directed to all people in the room, including the patient/family member. Don’t act like they’re invisible, especially when discussing their care. Let the patient know that they are still important and that their attention and input matter. 

Do use verbal and visual cues. Miscommunication can be result of your patient or family member being unable to hear or see you. By using both verbal and visual cues, you decrease the chance of misunderstandings. 

Do stay organized. You will reduce a lot of stress by keeping track of all the little details required to care for your parent or patient. Make sure you have a master contact list of doctors, family members, apartment managers, neighbors, etc. whose assistance you may need. Keep track of all medications and timing of medications on a calendar or spreadsheet.  

Self care 
All too often, caregivers forget to take time to nurture themselves and find the support that they need. By taking care of themselves, caregivers improve their ability to help others. 

Do reach out for help. It is also important that you have support as a caregiver as well. If you find yourself floundering emotionally or physically from the responsibility of caring for someone else, reach out to friends, family, or find a support group. Ask family and friends to help out with the care—or with the mundane everyday tasks that you may have let slide, like household chores, grocery shopping, car maintenance, etc. Hire help if you need it. 

Don't forego sleep. It’s easy to sacrifice sleep when under duress; however, sleep deprivation has serious consequences. You will be less able to solve problems and concentrate, which can make you more impatient and cross—all of which leads to poor quality caregiving. You will be a much better caregiver when well-rested. 

Do practice coping skills. Avoid additional stressors when possible and try to maintain your self-composure while under pressure (being well-rested helps you resist giving in to your temper). Consider meditation or yoga to improve your ability to cope with stress. 

Don't compare yourself to others. Every situation is different; every relationship is different. Do the best you can for your loved one by treating him or her with dignity and respect and meeting all of his or her needs. Comparing yourself to others will only increase your stress and anxiety.

I hope these tips will help improve the quality of your caregiving and the quality of your experience as a caregiver. Taking care of yourself is a must, especially in the face of so much responsibility. And remember that you must be your own—and your loved one’s—best advocate.

Marcela De Vivo is a freelance writer from Los Angeles whose writing covers several various topics, including marketing, healthcare, technology and more. As a caregiver herself, she understands how stressful it can be and incorporates meditation and yoga to manage that stress. You can read more about her journey with her son at www.prayfornathan.org.
Here’s a thought experiment presented a recent conference on healthcare consumer (ah hem, patient) advocacy. Let’s say that you’re told you need surgery of your knee. It’s an elective surgery to repair a torn knee ligament, the ACL. Your insurance covers part, but not all, of the cost. How do you choose which hospital to go to?

At the moment, there is very little information for you to make such a decision. Many people will choose the hospital they normally go to or that their doctor is affiliated with. For the purposes of this thought experiment, let’s say that the following information is available to you:

·      Type of hospital (large academic hospital versus small community hospital versus orthopedic specialty hospital)

·      Number of ACL surgeries per year

·      Rate of infection and complications

·      Length of stay

·      Patient satisfaction

·      Total cost to system

·      Total out-of-pocket cost to you

What factors would be most important to you in making your decision?

Healthcare choices are highly personal, and it’s not surprising that participants at the conference came up with widely different answers. Many said that they would rely on recommendations. Citing that user-originated online ratings of hospitals are not yet widespread, they stated that they would ask for feedback from family and friends.

“These are the people I trust, so I trust their judgment and experiences,” several group said. “If I ask a stranger, their values may be different from mine.”

Some looked at the potential negative consequences. “Hospital-acquired infections and complications are bad, and I want to avoid those at all cost,” a participant said. It’s not clear, though, whether data will be granular enough to provide specifics that are helpful in the comparison. What if hospital-acquired infections for the hospital overall are high, but complications for that procedure are low? Are there certain complications that are worse than others—maybe you’d put up with pneumonia, but not if your wrong knee were operated on?

Others tend to value the potential positives. Some like the idea of going to academic centers, which are seen as “better” than community sites; some others like orthopedic specialty hospitals because of their brand-name appeal. A higher number of procedures connotes confidence, as does greater patient satisfaction.

Interestingly, cost was much lower in the decision algorithm. Nobody cited cost to the system as a factor. This was not surprising, but what was surprising was that cost to individual was also not a major factor. As one participant put it, “I don’t want a discount surgeon.” There still seems to be the belief that the more expensive is better, or at least that no expenses should be spared when it comes to health—at least for those middle-class conference participants.

Finally, many would not even make the choice at all. They would go based on the recommendation of their doctor. According to multiple participants, asking their doctor about the possibility of a hospital different from their recommendation was difficulty. “How do I even go about addressing it?” they asked asked.

This exercise underscores an important realization: in the movement to empower patients, we must keep in mind that healthcare is not transparent, and not a true market. There is a difference between shopping for a TV and shopping for a surgeon. This is not to say that more information isn’t better; it is important for us as patients to get more information so as to make a better decision. But we must also be cognizant of the type of information that is available. Even in this information age, little is currently available to make a decision of what doctor or which hospital to choose. Ultimately, it will take time to develop trust in a source enough to rely upon it to supplant word of mouth and personal experience.