Guest: Narrative Medicine & Inside Stories

I am delighted to host a guest blog by writer and narrative medicine specialist Annie Robinson, who describes her journey with storytelling.

On a warm June afternoon, clustered around picnic tables, cradled in the mountains of the Berkshires in western Massachusetts, eight medical students from around the world began telling one another their stories. They were among approximately 40 students invited to participate in a weeklong intensive program run by AMSA for medical students interested in integrative medicine called LEAPS. As a graduate student of Narrative Medicine at Columbia University, I was asked to help facilitate the program.

Over iced tea and dark chocolate, they spoke of heartbreak and grief and divorce, of exam-stress and isolation and fear. They also shared brilliant visions of innovative approaches to medical care, and their aspirations to foster intimate relationships with their fellow medical students, their families and friends, and their patients. I listened with rapt attention as they described how, from personal struggles, conviction and vision were born for their careers as caregivers. I shivered, on that muggy summer day, knowing I was in the presence of my tribe. 

I was raised to revere the power of storytelling, which has been a critical component in how I have navigated my way through the world. It proved particularly useful when I entered the healthcare system in my early adolescence. I have spent over half of my life now as a patient, grappling with illnesses and issues of embodiment. In large part, it has been by speaking my struggles aloud that I have been able to heal. Telling my stories has allowed me to harness the power of the dark times to create connections and attain insight. 

As I sat there at LEAPS, witnessing medical students experiencing what I myself had experienced time and again–that relationships and wisdom come from baring one’s soul – I began to envision a way to enable more students to engage in this powerful narrative process. The seeds for my oral narratives podcast project Inside Stories: Medical Student Experiences were planted. I wanted to hear more student stories about the path to medicine, about struggles and triumphs, roadblocks and dreams. Through sharing over the course of that week, the students gained clarity and catharsis, and many remain in touch to this day. 

Inside Stories emerged from those conversations with LEAPS students. The idea was to develop a podcast platform that would enable medical students anywhere to both voice and listen to stories about medical student experience. Inside Stories’ mission is “to provide a means of personal healing, self-realization and empowerment through the sharing and receiving of personal stories, as well as to cultivate community among students in the often isolating medical school environment.” The interview process involves recording stories from current medical students, remotely or in-person. Recruitment has been done via word-of-mouth, social media platforms, and at medical humanities conferences. Student participants comprise a diverse demographic of men and women from all four years of medical school, of various races and nationalities, interested in medical fields ranging from OB/GYN to pediatrics to gastroenterology and many more. 

The topics addressed are vast. Hannah spoke about the challenges of navigating in medical school while being a mother. Petra reflected on how her spiritual path informs the challenges being a medical student. Katie discussed the encouragement she gained from finding her mentor. Leah shared how writing poetry aided her personal healing. Samar described how self-care practices helped her get through school. Angie talked about how her Syrian heritage drove her motivation to become a physician. Hieu shared his experiences as a community health worker in Uganda propelled his motivation to combat structural violence. Carlton described his motivation to pursue medicine in the South, to offer the African-American community a provider with whom they can identify.

    

To date, over 40 students have participated in the project. One participant reflected: “At first I was intimidated at the prospect of sharing my deepest feelings to a public audience, especially because I had never verbalized these feelings and in general I am a very private person. Ultimately, I'm glad I committed myself to this project and am proud to have my message out in the open.” Another described how sharing felt validating: “It made it seem real - everything that I had been through.”

I hope that by listening to the accounts of the courageous, insightful students whose stories constitute this project, others will follow suit and be inspired to share the personal stories at the heart of their journeys through the world of medicine.

If you or someone you know might be interested in telling their story about their experience in medical school, or if you have further questions about Inside Stories, please contact Annie and visit this website and on Twitter @Inside_Stories.

One ER Visit; Two Contrasting Stories

My latest NPR article was about conflicting accounts of the same ER visit. I presented the case of a man who came in with chest pain. He was deeply upset about his care, but the providers had a very different perspective.

Heart of the Matter: Treating the Disease Instead of the Person

I had no idea that that this article would draw so many comments (nearly 300,000 at last check). Scott Hensley, NPR’s Shots editor, posted a compilation of the comments, along with my remark:

"While I'm gratified that so many readers appreciate the time pressures of working in a busy ER, I am saddened by how many respondents accept that efficiency must come at the expense of humanity. Our health-care system needs to change to bridge the disconnect between what patients need and what hospitals do. All of us — as providers and patients —need to speak up, and demand a system that values both competence and compassion, and enables doctors to practice true patient-centered care."

I’d love to hear your thoughts. What can be done to improve our healthcare system?

Guest Post: My Total Transparency Manifesto

In this guest post, I am honored to host Dr. Elizabeth (Liz) Phillips, a resident physician in emergency medicine at George Washington University. She wrote this statement as part of her Total Transparency Manifesto on Who’s My Doctor. It was so moving that I asked her for permission to post it here. Thank you, Liz, for your inspiration and your humanity.

I am a physician and therefore a servant of others but I am also a human being. I believe in the importance of humanity in medicine and the danger of losing our capacity to have valuable and true human connections. Undeterred by the warnings from my mother who is a nurse and therefore all too familiar with the dysfunction of the health care system, I pursued a career in medicine because I consider it to be one of the most privileged professions. Not because of the academic prestige or the potential reimbursement but for the corporal, intense and deeply personal relationships that physicians have with patients.

My first real encounter with the ugly side of medicine was in college when I volunteered in a nursing home. Despite my attempts to mentally prepare myself for visits at the Erwin Gardens, every week I would find myself aghast of the poorly lit rooms, dirty floors and slight odor of urine that filled the air. Mrs. J was a Medicaid patient with little to no control over the quality of her care. Three times a week she would awake at 4 a.m. to be taken to the hospital for dialysis only to return hours later, face sunken and stomach growling with no one who really cared. My visits with Mrs. J were part of a service-in-learning course on Death and Dying but the interactions that I experienced at her nursing home exposed me to much more than the dubious and gradual process of dying. It was apparent to me that my spirited conversations with Mrs. J were a weak anesthetic to the constant sting of the poor quality of life, depression and lack of options that plagued her mind.

Patients like Mrs. J have been salient examples of the complex ethical dilemmas that confront physicians and our health care system every day. My experiences with her put a human face on the issues surrounding end of life care, insurance, medical costs, quality of life and health disparities. Mrs. J poignantly reminded me that physicians are demanded to work in an environment that ethically challenges them both as professionals and individuals. The emergency room is a place where many of these issues are highlighted as physicians struggle to care for patients who are underserved or unable access care efficiently through other venues. 

My philosophy of practice is deeply impacted by my clinical and educational background. I completed a masters in bioethics in medical school because it was essential for me to practice medicine with a constant awareness of patients as individuals and not illnesses. I am participating in the Who’s My Doctor campaign because it is important that patients know that I accept no money from drug companies or device companies. I am not making money from ordering more tests or pushing you as a patient to make certain medical decisions. I understand that I am a stranger with whom your share the most personal information and I consider this a privilege.

I see the need for physicians to serve as patient advocates. I have also witnessed the increasing demand for considerate and professional physicians whose integrity and dedication can withstand the turbulent changes that continue to confront health care in this country and around the world. I hope to utilize my unique background by serving as a competent and skilled practicing physician who also participates in changing policy to make our health care system one that better serves patients and reinvigorates our focus on comprehensive, preventive and compassionate care. Mrs. J would expect nothing less than my most valiant attempt to ameliorate the health care system that failed her in so many ways. I am constantly striving to make her proud.

Please join us in the joint patient-provider partnership for transparency.

What to Do When Your Mother is Diagnosed With Cancer

Holidays are a time for family. This is the third Christmas without my mother, and in her honor, I am posting an article previously published in Women's Health Magazine (posted here with their permission).

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 and entered doorways marked “restricted access," behind which I imagined miracles happened.

My mother, Sandy, father Xiaolu, me, and my sister Angela

As a medical student, I continued to hold the medical world in great awe. All that changed the day that my mother became a patient. After a year of telling her primary care doctor that something was wrong, she was finally diagnosed with metastatic breast cancer—cancer that, by then, had spread to her lungs, her bones, and her brain.

I was wracked with guilt. I was training to be a doctor—why didn’t I figure out that her symptoms indicated cancer? Why didn’t I try to convince her doctors to look harder? Why didn’t I know that medicine was so fallible?

Over the next several months, I saw firsthand not only how difficult it is to navigate the healthcare system, but also how scary and unwelcoming it can be. After her cancer surgery, my mother was supposed to be recovering, but every few hours, someone would come in and switch on bright lights. There were loud beeping noises around the clock; soon, she lost track of day and night. Her providers were not bad people, but they were overworked and often disconnected from the needs of their patients.

I struggled to find the right balance between advocating for my mother and being too pushy. Actually, it was my mother who was really afraid—afraid that we’d make her doctors so angry that they would give her worse care, or even fire her as a patient. She had many other concerns too, such as how to tell the rest of our family about her diagnosis, and how to take care of my younger sister, who at the time was just nine years old.

Reflecting back on the experience, I have five lessons for other young women whose lives are changed forever by their mother’s cancer diagnosis:

1) Be there for her. My mother was a proud and capable woman. She was among the first class of college graduates after China’s Cultural Revolution, then immigrated to the U.S. by herself. The last thing she wanted was to feel that she was dependent on other people. But cancer can be lonely and overwhelming. Though she never asked for help, I know she was grateful that I was there to accompany her to terrifying experiences like the first chemo appointment. Even if you can’t physically be there all the time—I was attending medical school 3,000 miles away—there are things you can do to offer your support. For us, it was talking to my sister and updating other family members. Be conscious not to reverse roles and treat your mother as if she can’t care for herself; rather, offer help and be there to do what needs to be done.

2) Do your research. Use whatever tools are at your disposal—even if it’s just an iPad. Find out about her doctors. Research her diagnosis and possible treatment options. Join online discussion groups. Not only do they offer supportive communities that you can connect with, but they can be good sources of advice. That’s not to say that all the advice you find will be relevant, or that you need to read every single journal article on her cancer. But being informed will help you to understand the medical jargon and come up with questions to ask her doctor.

3) Become an empowered advocate. Try to go with your mother to her doctor’s appointments if you can (if not, find another close family member or friend to go with her). Bring all her medications and other important items. Help her practice how she’ll communicate important details to the doctors. Prepare a concise list of questions. If she is too shy or feeling too unwell to ask questions herself, be ready to take over and advocate for her to get the best care possible.

4) Ask her how she’s doing. Many people don’t know what to say to a patient with cancer. My mother’s friends would see her losing her hair and becoming very thin. They would visit from time to time, but I never heard them ask her how she was doing. There were probably too afraid to ask, but you don’t have to be. Let her know that you want to have open conversations about her health—that it’s OK for her to tell you how she’s feeling. If you live far away, schedule regular phone calls or Skype conversations. Sometimes, you will hear things that really surprise you. For example, I found out that my mother was really hating this one medication regimen and having terrible side effects, but she was doing it because she wanted to prove to us that she was strong.

5) Take care of yourself. It’s easy to forget yourself in a stressful time like this. Remember that you won’t be of any help to anyone if you are ill, and your mother will be even more worried if you become unwell. Get enough sleep. Don’t forget to exercise. Figure out your own support system. This is an incredibly difficult time for you, too, and you will need to draw upon the support of your other family and friends. Throughout her treatment, there will be good times and bad times, so develop and solidify support systems that will benefit you both.

After eight years of fighting, and multiple rounds of chemotherapy, surgery, and radiation, my mother lost her battle with cancer. I think about her every day. I miss her terribly, and wish she were there to walk me down the aisle at my wedding and to cheer when my sister received her college diploma.

Perhaps my most important lesson to other young women is to cherish the time you have together. A cancer diagnosis is a wakeup call that our time is limited. I feel fortunate that I had those eight additional years to spend with my mother, to really get to know her and talk with her. Her illness made me recognize medicine’s limitations, and also made me appreciate the gift of life—and the irreplaceable bond between mother and daughter.

“Patients at Front and Center” & Other Dispatches From Stanford Medicine X #MedX

I have a confession: I was anxious about attending this week’s Stanford Medicine X conference. While I’m hardly anti-science, I advocate for the return of listening and a refocusing on the art of medicine. I write regularly about the low-tech revolution to healthcare reform—and here I was about to speak at a conference that’s “the intersection of medicine and technology".

My fears turned out to be unfounded. Rather than being a tech-fest, Medicine X sets itself apart from all the hundreds of medical conferences I’ve attended because patients are front and center. Patients formed the advisory panel; patients presented during every session; and, in fact, patients were the VIPs seated prominently at the front of the room. As multiple attendees noted, when there was a question, everyone turned to the patient—not the physician—for the answer.

Halfway through the conference, I had a realization: isn’t this how every medical conference should be? In fact, isn’t this how medicine is supposed to be, with the patient as an integral partner—and driver—of healthcare?

The three days of Medicine X were filled with dramatic examples of this. E-patient and cancer survival Liza Bernstein discussed the importance of dignity in healthcare: “It’s invisible, but just as important to us as oxygen.” Marble staircases and fancy furniture can’t make a good healthcare experience if respect and empathy are missing. “No matter how dire things are, you can’t let your dignity be taken away,” she urged.

Sam Gordon, an e-patient with terminal pancreatic cancer, shared his goals in health. “When the outcome is known, when curing isn’t possible, doctors have to heal,” he said. “My doctors are comfortable with ‘scientific time’, but how about let’s talk about my pain?”

There were many poignant moments when people shared their stories. They are reminders that in the often-sterile and detached environment of healthcare, it’s OK to show emotion. Emotion allows us to bond. Designer Amy Cueva contends that emotional intensity can be indicators of unmet need. “You must pay attention to pain, frustration, and anger,” she said. Our responses to the many authentic, emotional voices are testament to the critical importance of the story.

Both patient and providers discussed how the root of so many problems is miscommunication and lack of understanding. Stories help us connect, inspire, and heal, and Medicine X provided the venue to share our stories. It offered the space for disparate groups to break down our silos and work towards a mutual understanding.

Towards the end of the final day, I had another realization. I looked around the table I was sitting at. There was another provider, two patients, a hospital administrator, a software developer, and a researcher. We were attending the same sessions and participating in the same discussions—we were literally, in Katie McCurdy’s words, walking in each other’s shoes.

At the end of Medicine X, I feel invigorated. I’ve met some amazing advocates in the U.S. and internationally who are working towards the aim of participatory medicine and patient-centered care. I’ve listened to many stories and shared my own. 

More than anything, I am thinking, what an honor it is to be a physician! As Jason Albrecht says, what a great privilege it is indeed to “walk alongside, to guide, and to follow our patients.”

"Don’t Just Do Something, Stand There!"

My last blog post discussed why medicine is so intolerant of uncertainty and inaction, and how this has resulted in a culture of overtesting and overtreatment.

All of us as patients and doctors are at fault for feeding into this system of waste and harm. However, there are some active voices of resistance. Here are some examples:

Dr. Jerome Groopman, internist and author of the excellent book, How Doctors Think, writes about how he teaches medical students to “don’t just do something—stand there.” Very few situations in medicine require immediate action. It may be uncomfortable to apply the tincture of time as a treatment, and many doctors find it easier to order a test than to discuss the pros and cons of the test with a patient.

However, we need to remember our first principle, primum non nocere: first do no harm. Dr. Abraham Verghese writes about the importance of restraint and self-awareness in his novel, Cutting For Stone. Here is the protagonist, a doctor himself, speaking about his father:

My father, for whose skills as a surgeon I have the deepest respect, says, "The operation with the best outcome is the one you decide not to do." Knowing when not to operate, knowing when I am in over my head, knowing when to call for the assistance of a surgeon of my father's caliber--that kind of talent, that kind of "brilliance," goes unheralded.

Doctors: think carefully. Engage in thoughtful discussion with your patient, and decide together what’s best for him. Remember that no testing and no treatment may be the best course of action.

If you have to do something, consider a novel treatment that Dr. Aaron Stupple coins “a listening infusion.” During his internship, Dr. Stupple faced resistance when he questioned his supervisors on the necessity of costly tests and invasive treatments. As the most junior person on the team, he couldn’t override their decisions, but he could add his own treatment. He made it a routine to visit patients and talk to them, often staying hours after everyone else to finish his “listening infusion”. He didn’t obtain more test results, but somehow he knew more about his patients than anyone else. He didn’t give them a pill, but somehow his patients felt better at the end of the day.

This is what doctoring should be about. A recent study of resident doctors found that only 12% of their time was spent interacting with patients, versus 40% interacting with the computer. The doctor may find everything about a person’s laboratory tests, but nothing about her family or values. “Personalized medicine” and “patient-centered care” are hot buzzwords, but it’s not just about finding someone’s DNA and redoing the waiting room area. Improving medical care must begin with personalizing care to the patient and listening to her story.

We must bring back the art of medicine and the art of healing, and treat all of our patients with a “listening infusion”. Then, “don’t just do something—stand there”! Changing any deeply-entrenched culture is hard, but it can happen: one doctor at a time, one patient at a time.

The Low-Tech Revolution To Healthcare Reform

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.

12 Ways to Stay Safe in Hospitals

Hospitals can save you, but they can also harm you. In my last two articles, I discussed recent research that shows how medical errors affect one in three hospitalized patients, and the 10 types of errors that happen.

So how can you stay safe in hospitals? Follow these 12 life-saving tips:

#1. Never go alone. Always bring someone else—a trusted family member or friend—with you. That person will be your primary advocate, and can serve as an extra set of eyes and ears to help make sure you are safe. (This tip applies to routine doctors’ appointments too; always bring your advocate with you.)

#2. Determine, in advance, the goals of the hospitalization. Before you go to the hospital, ask your doctor why you need to be hospitalized. Is it necessary, or is outpatient care possible? What is the goal of the hospital stay? How often will that goal be assessed? Can you choose which hospital to go to, and when you should go? Rarely is the need for hospitalization so emergent that you can’t get these answers and discuss them with your doctor in advance.

#3. Prepare. Bring all the things you would normally bring with you to a doctor’s appointment, including a list of your medical problems and allergies. Don’t assume that the hospital will have your records. It’s very important to bring all the pill bottles that you take so that there will be no mistake about what dosage and how often you take your medications. Keep your main doctor’s phone number and your advocate’s phone number handy (though your advocate should be going with you to the hospital).

#4. Meet your care team. Find out who is in charge of your care: is it your regular doctor or a hospitalist doctor? Introduce yourself to her, and to your primary nurse. Meet the patient care tech, the nursing assistant, and the other members of your healthcare team. Tell them about yourself, and find about them. The more they get to know you as a person now, the more they will help to answer your questions later. Your advocate should also get to know your care team.

#5. Know who to call for help and how. Who will be the night-duty doctor and nurse, and how can you reach them? If you are in trouble, or if your advocate sees you’re in trouble, how will you get help? Many hospitals have a “rapid response team” or a “code team” that come to assist in emergency situations. Can your advocate activate this team himself?

#6. Ask about every test done. Don’t just consent to tests. They all have risks, so ask about them. Why is your blood drawn every morning—what is the purpose? Why are you getting the CT scan? You should discuss every test with your doctor in advance of doing them, and have a thoughtful discussion about risks, benefits, and alternatives.

#7. Ask about every treatment offered. If you’re being started on a new medication, ask about what it is, what the risks are, what the alternatives are, and why you need it. If you’re told you need a procedure, make sure you discuss it with your doctor.

#8. Keep a record of your hospital stay. Your advocate may need to help you with keeping a careful record. This includes your tests (make a note of what you get done and ask about the result), medications (write down when each medication is given and double-check it’s correct), and providers who come to see you (write down names of specialists and their recommendations). A detailed record helps to prevent mistakes, coordinate your care, and keep you on track.

#9. Attend bedside rounds. Doctors and nurses usually have rounds at least once a day to discuss their patients. Find out when rounds happen and ask if you and your advocate can attend. This is your time to find out what’s going on with your care. Prepare questions to ask during rounds.

#10. Know your daily plan. Rounds are a good time to ask about what is happening that day. Are you doing more tests? More treatments? Are you on track, or did something unexpected happen? When can you expect to go home?

#11. Keep your eye on infection control. If someone comes into your room, ask him to wash their hands. If someone is doing a procedure on you, ask her to follow an infection control checklist. Hospital-acquired infections kill 100,000 people every year, and you can help prevent them.

#12. If something isn’t right, speak up immediately. Remember that it’s your body and you know yourself the best. Get help if you develop new or worsening symptoms. Empower the person you’re with to speak up for you if you can’t.

All of these tips may sound like a lot of work, and you may be wondering why it’s your job to do all of this. After all, aren’t you the patient, the person who is feeling unwell and seeking help? By and large, doctors and nurses are well-meaning, and most of the time, the system is working well and you will get good care. However, mistakes do happen—and you and your advocate can help prevent medical error. Follow the tips above to make sure that you are safe and well during every hospital stay.

10 Medical Errors that Can Kill You in the Hospital

In my last post, you met Paul Hastings, the recently-retired accountant about to embark on an around-the-world trip who ended up with one-way ticket to the hospital instead. More people die from medical mistakes than they do from car accidents, pneumonia, and diabetes.

No doubt, this is a shocking statistic. Before we discuss what you can do about it, let’s first talk about the 10 most common errors that can occur during your hospital stay:

#1. Misdiagnosis. The most common type of medical error is error in diagnosis. This is not surprising, since the right diagnosis is the key to your entire medical error. A wrong diagnosis can result in delay in treatment, sometimes with deadly consequences. Not receiving a diagnosis can be dangerous too; this is why it’s so important to aim to figure out what you have, not just a list of things that you don’t have.

#2. Unnecessary treatment. Patient advocate Patty Skolnik founded Citizens for Patient Safety after her then-healthy, 22-year old son underwent brain surgery that left him partially paralyzed and unable to speak. He fought for his life for two years before succumbing to multiple infections. His story is incredibly tragic—especially since his surgery was never needed in the first place. Like Michael, thousands of people receive unnecessary treatment that cost them their lives.

#3. Unnecessary tests and deadly procedures. Studies show that $700 billion is spent every year on unnecessary tests and treatments. Not only is this costly, it can also be deadly. CT scans increase your lifetime risk of cancer, and dyes from CTs and MRIs can cause kidney failure. Even a simple blood draw can result in infection. This is not to say that you should never have a test done; only to be aware that there are risks involved, and to always ask why a test or procedure is needed.

#4. Medication mistakes. Over 60% of hospitalized patients miss their regular medication while they are in the hospital. On average, 6.8 medications are left out per patient. Wrong medications are given to patients; a 2006 Institute of Medicine report estimated that medication error injure 1.5 million Americans every year at a cost of $3.5 billion.

#5. “Never events”. Virtually everyone has heard the story of operating on wrong limb or the wrong patient. There are more horror stories. Food meant to go into stomach tubes go into chest tubes, resulting in severe infections. Air bubbles go into IV catheters, resulting in strokes. Sponges, wipes, and even scissors are left in people’s bodies after surgery. These are all “never events”, meaning that they should never happen, but they do, often with deadly consequences.

#6. Uncoordinated care. In our changing healthcare system, the idea of having “your” doctor is becoming a relic of the past. If you’re going to the hospital, chances that you won’t be taken care of by your regular doctor, but by the doctor on call. You’ll probably see several specialists, who scribble notes in charts but rarely coordinate with each other. You may end up with two of the same tests, or medications that interfere with each other. There could be lack of coordination between your doctor and your nurse, which can also results in confusion and medical error.

#7. Infections, from the hospital to you. According to the Centers for Disease Control, hospital-acquired infections affect 1.7 million people every year. These include pneumonias, infections around the site of surgery, urinary infections from catheters, and bloodstream infections from IVs. Such infections often involve bacteria that are resistant to many antibiotics, and can be deadly (the CDC estimates nearly 100,000 deaths due to them every year), especially to those with weakened immune systems.

#8. Not-so-accidental “accidents”. Every year, 500,000 patients fall while in the hospital. As many “accidents” occur due to malfunctioning medical devices. Defibrillators don’t shock; hip implants stop working; pacemaker wires break. There are supposed to be safeguards to prevent these problems from happening, but even if they happen for 1 in 100 people, do you want to be that one person who experiences the “accident”?

#9. Missed warning signs. When patients get worse, there is usually a period of minutes to hours where there are warning signs. You may feel worse, and there are often changes in your heart rate, blood pressure, and other measurements. Unfortunately, these warning signs are frequently missed, so that by the time they are finally noticed, there could have been irreversible damage.  

#10. Going home—not so fast. Studies show that 1 in 5 Medicare patients return to the hospital within 30 days of discharge from the hospital. This could be due to patients being discharged before they are ready, without understanding their discharge information, without adequate follow-up, or if there are complications with their care. The transition from hospital to home is one of the most vulnerable times, and miscommunication and misunderstanding can kill you after you get home from the hospital too.

Hospitals recognize these medical errors as a significant problem, and they are taking steps to make care safer. But if you or your loved one needs medical care now, what you can do to ensure that your hospital doesn’t kill you? I’ll be writing more tips soon on my blog and on Psychology Today—please share your sstory, and thank you for reading.