Bring in the Patients

- Ginny Combs,  RNC-MN, BSN, IBCLC  Graduate Nursing Student at Worcester State University, Maternal Newborn Nurse at UMass Memorial Hospital

Confessions: Even though I have been a maternal-newborn nurse for more than 20 years, I have little knowledge about the process of improvement and creating change. I have the passion, but not the know-how. The word “improvement” was never uttered when I went to school. Every day, I see how evidence-based practice does not reach our patients. Every conference continues to highlight the evidence, but the conversation ends there. It seems as if the research sits in books and journals waiting for us to unwrap it and “birth” it with the patients.

Notice I wrote “with.” My first instinct was to write “for the patients,” but after my IHI time, my lens has changed. Soon, I think you’ll understand why.

In my search for answers and knowledge about process improvement, my Worcester State University nursing department director introduced me to the IHI Open School and I felt as though I’d landed on a new and fabulous planet. And last week, I was fortunate to attend a deeply inspirational and transforming event as an IHI Open School student in New Orleans..

The IHI Perinatal Improvement Collaborative all-team meeting gathered for three days of powerful discussions regarding improvement in perinatal systems and how to actually work on creating change!  My mind was pleasantly overwhelmed and racing with ideas. I felt like I was on fire with a “new way” that truly changed how I see health care.

Witnessing this team of committed change agents work with perinatal groups from around the United States was one of the most empowering experiences I’ve had as a nurse and student. The IHI team, led by the inspiring Sue Gullo, walks the talk. The conference included a patient panel of mothers sharing heartfelt stories about their births and birth losses. In that large room of more than 100 people, I could feel a tilt happen. In our own ways, we all committed to putting the patient at the table with us — and always at the center of what we do.

The mothers spoke through tears as they described what mattered to them while in the hospital. One mother shared how “it’s not what you do or say, but it is how you make us feel that matters.” Another mother bravely discussed the loss of her infant and how important the staff was to her healing. “Patience is so important, don’t rush; some things can’t ever be pushed” as she told of her need to have just one more ultrasound to know she had lost her baby girl. This mother wanted to “pay it forward” and now works with other mothers on this hospital unit who are experiencing a loss.

The audience was tearing up and we embraced this sacred chance to learn from — and really tune into — the experience of patients and how our own actions can support or deter healing. Many in the audience nodded their heads and spoke of how those in health care can get desensitized and how vital it is to our work to bring the patient into the health care discussions. We all have either been a patient or will be one!  How different would our health care would be if patients contributed at all levels, offering wisdom through their own experience?

As we move from students to clinical work, I’ll pass on the challenge the IHI Perinatal Team put forward at the conference: Bring in the patients. Not just as a side note, but as a real contributor for change. It got me thinking of how we can include patients in our own IHI Open School Chapter meetings. How can patients inform students regarding innovative health care ideas and healing? How might hearing the story of a mother needing just one more discussion, more time, and more compassion color our thoughts when we  often move too quickly through our tasks as health care workers? We can “birth” new health care WITH patients, not for them. Take the challenge, bring in the patients, and be ready for the change!

Lessons from the Dana Farber Cancer Institute

I consider myself lucky. My experiences as a patient are limited and predictable. My sister, on the other hand, suffers from a combination of chronic conditions. Midnight trips to the ED due to extreme pain occur regularly – often times accompanied by needless harm.

About a week ago, my sister was admitted to the ED, doubled-over in excruciating pain. The medical staff called for a CT scan. As a nurse was administering an IV for contrast solution, my sister explained that the needle was not in a vein. Unfortunately, the nurse did not heed this plea. After administering the scan, two things happened:
1) The scan showed nothing
2) Ashlee’s arm ballooned to three-times its normal size, stiff with contrast that never made it into her veins

Despite the success stories and leaders of patient-centered care I learn about IHI, my sister’s experiences leave me in limbo – somewhere between skeptical and cynical – regarding the state of care.

This limbo changed last week.

I joined 20 IHI team members on October 27 on a site visit to the Dana Farber Cancer Institute. We had the unique opportunity to dive into the patient experience without bearing the burden of being a patient.

Aside from the familiar name, I was completely unfamiliar with what Dana Farber offers to patients. But it quickly became apparent that Dana Farber did something special. Our destination, the Yawkey Building, stood out as the new building on the block. Instead of the cold, industrial design of its neighbors, the Yawkey building welcomes with a glass facade, cut with naturally-colored, wood trim. The design feels like it could hold an art institute, and in a way, it does (more on this later).

Patients and visitors can self park or valet (for the same fee!) in the underground garage. We made our way seven stories underground – the first few stories were full and when we found open spaces, they were reserved for patients and families. Nearly 100 feet underground, it became clear what sets Dana Farber apart. Patients are afforded the luxury of valet parking to avoid the garage – a nice touch when they clearly have more important things on their minds.

Yawkey’s main lobby and information center feels open and welcoming. Art hangs on the walls and from the ceiling. Dick Tonachel, a DFCI volunteer and one of our hosts, warmly greeted us and took us to our luncheon. Dr. Benz, the President of Dana Farber, welcomed us to Dana Farber. Then, in true patient-centered fashion, the leaders of the Dana Farber Patient and Family Advisor Council took over the meeting.

PFAC consults DFCI management to improve operations. As former patients, they provide a valuable end-user perspective. We learned that their input was sought out from the beginning. Initial blueprints were changed as the PFAC explained that certain plans could be improved for the patient experience. Including this perspective is so natural, but is not the industry norm.

Our group of 20 IHIers split into small groups of 5-6 members for the tour. Anne Tonachel – our tour guide, Dick’s wife, a DFCI volunteer, and a cancer survivor – led us through the institute.

A piece of art hung just outside the luncheon room. Anne explained that the building committee placed a high value on displaying art throughout the facility. This particular piece was titled The Souper Dress – a 60’s mod-style dress printed with a series of Campbell’s soup cans – an Andy Warhol original. The piece was donated to DFCI and is proudly displayed. We saw more art throughout our tour, some which was created by patients. It is all approved by a patient-filled committee.

(Starting with a Warhol was incredibly fitting. His fascination with Campbell’s Soup revolved around how egalitarian the soup was. The President of the United States and a minimum wage worker have the same Campbell’s experience. I think this sends a great message for the aspirations of our healthcare system.)

We continued on to the patient examination rooms. Anne pointed out that there were no cracks or seams in the room. The counter tops were one, continuous material. The examination table had no sections held together with seams. Places for germs to hide were minimized. Anne then pointed out the floor. No one noticed it at first. Instead of the standard, monochromatic tile, this tile included two perpendicular columns of color. Studies show that nauseous patients have an easier time when a simple floor pattern gives their eyes something to focus on.

This is when it hit me. DFCI pays incredible attention to detail. If there is something that can make the patient experience slightly easier, it is implemented. These small details add up to an experience that may be unmatched in health care. To drive this point home, Anne showed how every examination table in the building is stocked with the exact same items, in the exact same places, so a medic can handle an emergency on any floor.

The building team sought the eco-friendly Silver LEED certification. Aside from using as many renewable materials as possible, outdoor gardens collect rain water which helps minimize the energy consumption of the air conditioning system. DFCI thought of everything – and received Gold LEED certification.

Our final stop was a two story, indoor healing garden. Fresh plants are rotated monthly. Soft music plays. No food, drinks, or electronics are allowed. The calm of the room is soothing, giving patients a great place to reflect and mentally heal.

Going into this site visit, my mind was preoccupied with the upsetting patient story of my sister. But knowing how bad things can get and then seeing how incredible things can be had a profound impact on my spirit. It was a delight to see the Dana Farber Cancer Institute at work. We can all hope that this level of intentional quality will spread throughout our entire system.



- Alex Anderson, Executive Assistant at IHI

Why I'm Becoming a Doctor

"Son, I shot her in the face."

Most people probably can't pinpoint the moment they chose their career. I can, though. It was the moment - in a quiet, sunny courtyard on a July - that I heard an old man utter those seven words to me. He probably didn't realize it, but it changed my life forever.

Let me start at the beginning.

My personal statement for my American Medical College Application Service (AMCAS) application was adequate. It talked about passion for medical school in three dimensions - academics, research, and service. I had a nice story about a personal experience with mental illness in my family, examples of my dedication to service work in the community free clinic, and a short but detailed description of my basic science research in neurosciences. All in all, I think it was pretty good. And more importantly, it served its purpose!

But not much of that was the real reason I was coming to medical school. I had the experiences that truly defined my interest in the profession, but I was too young to understand their impact on me. I now realize that the real reason I am studying/pursuing a career in medicine is because patients are people. How did I come to this realization?

The summer before my junior year in college, I had the opportunity to work as a Patient Safety Aide (PSA) in a local hospital. For those of you who don't know, a PSA is wonderful thing. We exist to serve. Our technical description is essentially to replace restraints. My unit was filled with rather sick geriatric patients, and as you may know, they sometimes get confused and try to get out of bed, take out their IVs, and generally cause a fuss. Instead of using restraints, the hospital put aspiring students in various units to move from bed to bed, check on patients, keep them company, and occasionally play some games with them. I also spent a lot of my time with the nurses, and I really was eager to help (when I wasn't reading novels, anyway - I think that was a Harry Potter summer for me). I would help clean up rooms, get things that nurses needed, and I wasn't really aware of much going on around me. You may think that I really got to connect with the patients, because I was spending so much time with them, but this is entirely untrue. Unfortunately, most of the patients weren't too communicative, and many of them were rather confused about where they were.

All in all, it was a very pleasant atmosphere and a nice summer. But it didn't particularly make me want to go into medicine. Actually, what I saw was pretty discouraging. Patients looked like bags of meat with all kinds of tubes sticking in them. Really, that's what I saw - near lifeless sacks of flesh that seemed to be entities of suffering far more than of living.

One sunny, July day, I engaged myself in one of our additional duties. Some thoughtful clinician had realized that patients don't really like to be cooped up in their rooms all day. I gathered the patient up into a wheelchair to take them outside.

It was a gorgeous day outside, the kind of sunny day that just feels great in scrubs that you've only been in for a couple of hours. I wheeled the patient to the garden and breathed in deeply, enjoying the flowers and bathing in the relaxation of the moment. It was just me and this garden, and it was rather peaceful. "This was a pretty good summer," I thought. "This'll look great on my med school app and I can probably write about some meaningful experience I basically make up about how I saw a doctor really connect with a patient and ... what was that noise?"

The patient had started talking. It wasn't too clear, and I had to walk around in front of the wheelchair and kneel down. I got a better look at him. He looked like he was 80, beaten badly from the inside out, with the bruises showing through his skin, but I knew he was in his early 60s. And he was talking to me.

"Sir? I can't really understand you."

A little coughing. The coughing had actually gotten quite a bit better, it seemed like.

"I was in the war."

"Sir? The war?"

"I was about your age. I was with my boys ... a little girl was walking up to us. It was disgusting there. She was maybe 6 years old. She was pretty. So pretty. Beautiful face. Adorable. She was one of them, wearing rags and looking tired and confused, but she was a beautiful little girl."

"Sir? A girl?"

What was this guy going on about? Maybe I should be worried - maybe he is becoming delirious or something. Maybe this is why they have me here, for when this happens and he starts to think he is back in the war, what if he tries to stand up and fight me or something. He probably thinks I'm the enemy!

"Son, I shot her in the face."

"... Excuse me?"

"She was carrying a grenade. They had sent her to us with a live grenade. I shot her in the face to save my men. She was so beautiful ... "

That is when it happened. Patients became people. That was the moment, crystal clear in front of my eyes to this day and forever. This man looked like hell and lived with incredible amounts of suffering, but he did not live the life I saw. He lived a life of profound regret for that one moment in his life that happened when he was as old as I was. He possessed a profound clarity despite the chocking fog of his illness, and he was not delirious or demented. And he was a person.

I think I told that story in an interview at my medical school, with a student. I don't know why I started to tell it, because I really didn't think it was a good story to tell at an interview. I told that story, and I barely understood it or its impact on me. Three years later, with some more maturity and a bit more experience with patients, the meaning of that story is only beginning to set in. Those suffering patients in that hospital were not sickened, lifeless, unanimated meat. They were human beings in the most deep and spiritual sense of the word, and they lived those ultimately human experiences. Love. Pain. Regret. The question of whether or not they did the right thing.

I would be lucky to be that human, ever. And that is the real reason why I want to be a doctor. Because patients are people.

- Lakshman Swamy, MD/MBA Candidate, 2013, Boonshoft School of Medicine at Wright State University

An Evening of Thanks

I have a little over a month left of my first of year of medical school...an unbelievable fact. One of the highlights of my year has been the Family Centered Experience program. I have written about the program in previous posts here and here. Closing up our year, all first year med students were asked to work in small groups and create an interpretive project using untraditional media to express our understanding of what we have learned from our patient volunteers. Tonight, all of our interpretive projects were on display and we spent the evening with our classmates and patient volunteers experiencing the reinterpretation of the struggles and triumphs of a life with illness.

Interpretive projects included poems, works of art, mixed media art pieces, cookbooks, original pieces of music, interpretive dance pieces, a children's book, and much more. Since pictures are worth a thousand words....enjoy!












To our patient volunteers, thank you so much for a memorable year!

If you had the opportunity to creatively express the patient experience with illness, what would you create?

This is the Clinic that Will and Charlie Built...

I have officially become a groupie of the quality improvement in health care movement. Books sitting on my nightstand include: Pauline Chen's Final Exam, Super Crunchers by Ian Ayres, and How to Change the World by David Bornstein. I squealed like I had just sighted Brad Pitt when Atul Gawande's latest book, The Checklist Manifesto arrived at my door. Instead of simply saying that I need to clean my apartment, I specifically think that I need to "5S" my kitchen and desk. In order to stay fit and get rid of the belly fat I've grown since starting medical school, I am now in PDSA cycle 3 for a 30 minute exercise routine that I can reliably perform every day. The latest sign that I am a quality improvement junkie is my weekend pilgrimage to Mayo Clinic in Rochester, Minnesota.

This past weekend the AMSA Chapter at Mayo Clinic hosted a Patient Safety and Quality Care Conference at Mayo Clinic. The Mayo Clinic has not only been one of President Obama's shining examples of high quality care at low costs since he began his health reform push early last year, but has also consistently popped up during my experience at IHI as a health system that has truly embraced the IOM aim of patient-centeredness. Even though I'm buried underneath the dorsal columns of my central nervous system sequence, this was an opportunity I could not miss!



When I stepped off the plane in Rochester, I was abruptly greeted by a chilling gust of wind. But, that didn't deter me and like any good quality improvement groupie, I pressed on. From the moment my shuttle dropped me off in front of the Gonda Building and the Mayo Clinic greeters helped me out of the van, I knew I had arrived at what many say is the mecca of patient-centered care. It was difficult not to spend the weekend with my mouth agape.

Every aspect of the Mayo Clinic from its architecture and design, to the doctor-patient relationship, to Mayo's treatment of patient safety strongly embodies and reflects its mission: Mayo will provide the best care to every patient every day through integrated clinical practice, education and research. As Dr. Tom Viggiano, Dean of Mayo Medical School explained during his talk about Mayo Clinic's History, Culture and Professionalism Covenant, Mayo Clinic's mission stems from a remarkable story. A story about the work of Dr. William Worrall Mayo and his two sons, Drs. William and Charles Mayo.



Dr. William Worrall Mayo, born in England and a student of physicist John Dalton, arrived in Rochester as the Union army's examining surgeon. As his sons were growing up, William and Charles were intimately involved in their father's practice. They drove their father on patient rounds, attended medical society meetings, and even assisted their father in surgical procedures. This early exposure laid the foundations of medicine and patient care for the two brothers. Both William and Charles through consistent encouragement from their father attended medical school and both returned to Rochester to join their father's practice.

The tornado of 1883 that hit Rochester was a catalyst that led to the creation of Rochester's first hospital built in collaboration with the Sisters of Saint Francis. The Mayo family then became the physicians of the hospital and it was the brotherhood bond between William and Charles that was the first "team" that set the tone for the teamwork we see at Mayo Clinic today. As the hospital expanded and the fame of the brothers grew, it became necessary for William and Charles to pick physician partners to join the practice, expanding the team. In Dr. William Mayo's words, here is how teamwork was defined:

"As we grow in learning, we more justly appreciate our dependence upon each other. The sum-total of medical knowledge is now so great and wide-spreading that it would be futile for one man to attempt to acquire, or for any one man to assume that he has, even a good working knowledge of any large part of the whole. The very necessities of the case are driving practitioners into cooperation. The best interest of the patient is the only interest to be considered, and in order that the sick may have the benefit of advancing knowledge, union of forces is necessary."

One such recruited partner in the team that proved to be influential in shaping Mayo Clinic, was Dr. Henry Plummer. Dr. Henry Plummer's ingenuity led him to design an easy, retrievable medical record system. This system gave each patient an ID number and the mode of transport for these records was a system of pipes. Dr. Plummer's innovation acknowledged the fundamental place that medical records had in research and advancing medical knowledge and the need for shared data between physicians to deliver the best care for patients. Dr. Plummer was also instrumental in bringing the Mayo vision of integrated care into reality with the construction of the first Mayo Clinic building (built in 1914), which housed clinical medicine departments, laboratories, and administration offices all under one roof.



As the years continue, additions and innovations to the Mayo Clinic all align with the traditions that Drs. William and Charles Mayo started. There is a Mother Goose rhyme called, "This is the house that Jack built..." Each successive stanza in the rhyme gets longer and longer as odd characteristics are added to the house that Jack built. The Mayo Clinic Model of Care we know and admire today is a result of a similar layering construction.

Though, from my weekend experience at Mayo Clinic, the foundations that Drs. William and Charles Mayo created are more than just a model of care, it's a tangible culture, or even a life force that allows the Mayo Clinic to thrive. The wholly understood value that the needs of the patient come first allow the Mayo Clinic to continually push the boundaries of improvement. The weekend was primarily focused on medical errors and the developed practices and systems at the Mayo Clinic to address patient safety and quality care. We heard from Dr. Stephen Swensen, Director of Quality at Mayo Clinic, Dr. Thor Sundt who is pioneering improvements in interprofessional teamwork in the surgical setting, Dr. Paula Santrach, Chair of Clinical Practice Quality Oversight Committee, Dr. Douglas Wood, Medical Director of the Quality Academy, Dr. Bob Cima on error analysis in surgery, and many many more who volunteered their time to not only share with us their approaches to medical error management, but true to the Mayo Clinic's culture of putting the patient's needs first were also frank about areas that needed improvement. If President Obama's shining beacon of clinical excellence continues to make improvements upon "the clinic that Will and Charlie built," then the rest of us certainly have lots to learn.



I've certainly learned a lot this weekend both through the stated curriculum in the conference agenda, but also through the hidden curriculum of taking in the culture of the Mayo Clinic. I may not be able to take back to the University of Michigan Mayo's unique electronic physician and patient tracking system or redesign all of the exam rooms at Michigan so that physicians are never talking down to their patients, but I can take a plank of Mayo's culture and lay it down as my foundation so that wherever I am, I can do my best to extend the clinic that Will and Charlie built.



A big thanks to Crystal Pruitt and Crystal Shen of Mayo Medical School who organized this enlightening conference. I look forward to more great opportunities to learn about patient safety and quality improvement from the great leaders at the Mayo Clinic.

Being Honest: Ducking Out from Under the Table

My adorable dog, May, has her flaws. Her bark and temper are infamous in our neighborhood. If the toy is not made of rubber, it will become an unrecognizable ball of mush within days. However, when it comes to going out to do her business, May almost never has accidents. On those rare occasions she makes a mistake, she slowly greets us with her head ducked down rather than her normal energy-filled charge when we arrive home.

We understand why these accidents happen. Most medical errors, as discussed in the IOM report, To Err is Human, are a result of poorly designed systems that do not give providers the best chance possible to care for patients in the way that they would like. May's accidents are also systems error. We only find a pool of pee in the house when we leave for a long period of time without allowing her to go out before we leave. May was not being negligent or purposefully filthy; the system she lives in simply does not allow her to successfully avoid these accidents. With these system constraints in mind, we do not blame her, but continue to work on scheduling improvements to prevent future occurrences.



Clinicians never want to intentionally harm their patients and are often emotionally impacted by a mistake. Similarly, as far as we can tell, May deeply regrets her accidents. Since she cannot use words to express her regret, she hides under the dining table and avoids eye contact as we clean up the mess until we say, "It's okay, May." Sometimes, she will even circle the "biohazard" zone slowly, as if admonishing herself. May's actions demonstrate her acknowledgment of the accident and we accept her apology--a courteous exchange that occurs between people all the time.

Medical malpractice is one of the few bipartisan goals of the current health reform battle. However, how to reform this messy process that is hard on all participants (physicians, hospitals, patients and families, and insurers) emotionally and financially is not as clear. Focusing on how to minimize costly lawsuits through caps on financial damages awarded to patients further complicates the fundamental courtesies that should occur when a mistake happens: acknowledgment, understanding, acceptance, and forgiveness.

In a paper published in the NEJM in 2006, then Senators Hilary Clinton and Barack Obama discuss how to improve patient safety and the medical liability climate through open communication between physicians and patients. The paper cites that the most important factor in people's decisions to file lawsuits is not negligence, but ineffective communication between patients and providers: lawsuits occur when "unexpected adverse outcomes are met with a lack of empathy from physicians and a perceived or actual withholding of essential information."



For those of you who are Grey's Anatomy fans (click here to read a Grey's Anatomy Obsession confessional), episode 13 of season 6 titled, "State of Love and Trust," touches specifically on medical liability reform and being honest with patients. A patient, later discovered to have a form of cytochrome P450 that unexpectedly allows her to metabolize anesthesia faster than normal, wakes up from anesthesiology in the middle of her bowel surgery and is traumatized by the violence of surgery and the panicked yelling from the surgical team. Emotionally disturbed by the experience, the patient wishes to press charges against the hospital. Dr. Shepherd, interim Chief of Surgery, is deep in thought about the threat of a lawsuit on his first day as Chief, when Dr. Miranda Bailey talks to him about open communication between physicians and patients in situations of medical error (see clip above). By apologizing to the patient, Dr. Shepherd is acknowledging the mistake and the patient's concerns, is providing the patient with the opportunity to understand and accept the mistake, and is working with the patient to reach an agreement that allows both sides to accept the mistake and attempt to reach forgiveness.

As then Senators Clinton and Obama explain in the paper, open communication allows for improvements in patient safety. The proposed National Medical Error Disclosure and Compensation (MEDiC) Bill was based on model disclosure programs such as those in place at the University of Michigan Health System (Go Blue!) and the Veterans Affairs system. These programs have given both patients and physicians protection while successfully reducing administrative and legal costs for providers, insurers, and hospitals. Surveys from these successful programs have also showed greater trust in and satisfaction with health care providers. On the cost side, the disclosure programs have resulted in the filing of fewer malpractice suits, a reduction in litigation costs, accelerated provision of compensation to patients, and increases in the numbers of patients who are compensated.

It is a remarkable feat that the University of Michigan Health System has reduced litigation costs from $3 million to $1 million in four years with its disclosure program. Though isn't it ironic that at the heart of the solution to such a complex problem are the basic principles of being honest and communicating openly with patients?

Telling patients the truth at times may be harder, but it is the most respectful thing to do. My dog, May, would bark in agreement.

Understanding the Incomplete Medical Diagnosis

*names and some details have been changed to maintain and protect privacy*

If multiple sclerosis was an anatomy review item, I can just imagine Dr. Zeller pointing at the spinal cord and asking me, “Eva, what is the clinical presentation of multiple sclerosis?” After overcoming the anxiety of being “pimped,” my response would probably include symptoms such as: muscle weakness, difficulty in moving, difficulty with balance, visual problems, fatigue, and pain. Before meeting my patient volunteer, Casey, that’s how I characterized multiple sclerosis. The mental image in my head also included a wheelchair. This snapshot of multiple sclerosis is the medical mold that physicians give to their patients upon diagnosis, which I used to think was complete and scientifically correct.

After almost six months with Casey, I now understand that this sort of medical mold is incomplete. This medical mold is analogous to giving an unknowing sculptor a headless cast of Michaelangelo’s David and telling him that this represented Michaelangelo’s complete masterpiece. What was missing in the medical mold of multiple sclerosis (MS)?

What was missing was Casey. Her empowering and encouraging relationship with Dr. Osuco, the optometrist who made her initial diagnosis; the negative recommendations she received from physicians that told her to quit nursing school because she had MS; her steady and rapid inability to walk up flights of stairs; the finality and fear she felt when researching more information about her condition; the shame of losing the ability to spell simple words; the unbearable embarrassment of urinary incontinence; the feeling of helplessness as her right side got weaker; the difficulties of maintaining a treatment regimen that seemed to fundamentally change her personality; starting every date with “I have MS”; shopping for life insurance plans along with her elderly mother; the loss of friends because they just couldn’t handle it; designing a plan for “when things get to that point”; doctor shopping and coming across the kind and comprehensive care that Dr. Richardson provides; temporarily losing hearing in her right ear and worrying about its implications on her MS; letting go of managing the disease on her own and instead working with Dr. Richardson's team; navigating how others view her given her very normal appearance but serious condition, trying not to mention her occupation as a nurse unless it means better care for her and her family; meeting other MS patients at varying degrees of disease progression who are all fighting and living quality lives; negotiating the risks and benefits of a high-risk drug that drastically improves quality of life but can cause a deadly brain infection; being the primary caretaker for her elderly mother who is surviving on an oxygen tank and two developmentally challenged foster children; working as a nurse nearly full time; her strong beliefs to advocate for quality and patient-centered care; and lighting up the room with her warm smile. That is the complete picture of MS.

How can we as future physicians learn how to see the complete picture of a disease? We need to be aware that our list of symptoms is only a subset of factors that can instigate tremendous challenges and change on another life, learn how to talk to patients about their values and greatest concerns, and integrate those values and concerns with the treatment plan. By laying a foundation of trust and building a strong partnership with patients, we can begin to cross the gap between the stigma that we create and the reality of illness in an individual. My experience with Casey has taught me these important lessons and I hope to never forget them as I continue in my training.

Many thanks.

My First Patient

As I put on my first set of scrubs before entering the anatomy labs for my first dissection, I realized that I have never really examined my own body very closely.

However, this realization does not mean that I've never tried. The scars on my body are a road map to all of the ways that I have tried to figure out what lies beneath my skin. For example, I have a scar on my tongue from stapling it and messily extracting the staple on my own when I was six years old. My mom had just had surgery and I couldn't understand why she had staples across her belly. Weeks later, after I was told that doctors use instruments that look a little like kitchen knives to open and fix the body, I sliced my finger with the pizza cutter. Burning my cheek with my mom's curling iron not too long after the pizza cutter incident was the last straw. My parents very wisely remembered to add "don't try this" to any of their stories that could be interpreted as a new way to "test" something on myself. What I must have innately understood is that there is no better way to learn than to learn by doing.

With this dangerous streak of curiosity in me, I was surprised to find myself, 17 years later, walking with trepidation down the corridor towards the anatomy labs. The ultimate chance to learn was finally here. But, my steps had lost their usual spring (not just because my scrubs were too big) and rather than looking straight ahead, the scuff marks on the ground began to "fascinate" me. I couldn't contain myself when I thought about finally peeling away the skin to see how all of the different parts of our body worked together. Anatomy has a tangible tie to the practice of medicine, much more than sitting in a lecture hall learning about protein structure. So, what was I waiting for?

It wasn't the smell, the fear of cutting, becoming intimate with death, or even the overwhelming amount of material that was soon expected to become second nature to us. I was afraid of this gift: a complete stranger and her family have given me the opportunity to examine a body and know it far better than my own. The cadaver I was to spend the next few months with was not just going to be my teacher, but also my first patient. However, unlike my future patients, I will never know anything about her life except for what I can infer from her road map of scars. Her stories will remain a mystery. She has allowed me to crack open her spine, poke through her muscles, dig deep to find bundles of nerves--all things that she herself will never have the privilege of doing. Yet, her laugh, her voice, and the sparkle in her eyes are not even things that I can imagine and ascribe to her.

Perhaps it is this asymmetry of information that makes our relationship unique.While these missing pieces make it easier to objectively and academically canvass her body and focus on the science of the human body, I find myself inserting a piece of me into every gap of knowledge. For every incision I make and for every intricacy I am able to uncover, I am mentally making the same incision and discovery in myself. Her spinous processes are now also my spinous processes. Even though I have the exhilarating chance to remove each piece and uncover the delicate spinal cord, I must respect and care for each piece as if it were my own. I do my best to be attentive just in case I'm lucky enough to illuminate a precious pearl about her life.

After understanding and appreciating this special relationship with my first patient, I walk into anatomy lab with a sense of humbleness to accompany my geeky excitement. In anatomy, we are learning by doing. We are learning and practicing how to listen and learn from our patients by doing just that.

There really is no better way to learn.

Teaching Patient-Centeredness

Throughout my senior year of college, I suffered from severe lower back pain. It was difficult for me to sit through an hour long lecture, I could not bend over completely for dance, and lying flat on my back to sleep was also very uncomfortable. I thought it was just normal back pain that almost everyone experiences at some point in their lives. But, after months of no change, I knew this couldn't have been simple muscle strain or stress induced pain. It was time to visit the doctor.

After quickly scanning my back, my physician said very nonchalantly, "This is easy, you have scoliosis."



I knew what scoliosis was. I remembered being screened throughout middle school by the school nurse and had always received a tap on my shoulder signaling that my spine was straight. My first question as I stared back at my doctor in disbelief was, "What does this mean?" Looking right past me, he explained scoliosis in very clinical terms, focusing on how the degree of the curve in my spine would greatly affect my prognosis. But, what I wanted to know was how this new word would change my life. What kind of new limitations would I have? Would I be able to run and play Ultimate Frisbee? And most importantly, would I be able to dance anymore?

His answer: "No, I wouldn't recommend you run or dance anymore." That was my coup de grâce. I was given a textbook to look at pictures of people with scoliosis and saw how the curves in their spine had caused gross displacments in their hips and rib-cages. I just couldn't imagine myself looking like that. What kind of changes were going to happen to me? What did I do to deserve this? My parents were right, I shouldn't have hunched over while studying. I walked out of the office in a stupor as my doctor told me we would just have to monitor the movement of my spine over time. If I felt any pain, I should just take some Advil.



As I walked home, I called my mom and told her the bad news. I was on the verge of tears. I just couldn't imagine my life with a completely different range of motion. I have been dancing since I was five years old and performing has become a significant part of who I am. This was a lot of information and emotion to swallow at once and I received no support from my doctor.

Thankfully, this was a misdiagnosis. I do not have scoliosis and I continue to run, leap, and spin through the weeks. I had sustained an injury that caused my hips to become misaligned and induce a twist in my lower spine. This caused an imbalance of muscle growth and pain--a common injury to dancers, according to the physical therapist. While the misdiagnosis had caused a week of emotional turmoil, it was the manner in which the diagnosis was given that made me feel lost, hopeless, and confused. In the doctor's eyes I was probably puzzle number 17 of the day and scoliosis was just another condition.

After just a few weeks of medical school, I'm already worrying about losing my ability to empathize with others and my future patients. During our first lecture, our professors told us that they were going to teach us the language of medicine. Will learning the language of medicine prevent me from speaking normally? Will I be as careless as my scoliosis doctor when speaking to my future patients?

Fortunately, the University of Michigan has a component of our curriculum to prevent this from happening. The program is called the Family Centered Experience. The first year medical students are grouped into pairs and each pair is assigned a patient and family managing at least one chronic disease. This could be a mother suffering from breast cancer, a father managing diabetes, or a grandfather suffering from a neurodegenerative disease. Throughout the year, we will be visiting our families and attending clinic visits with them in order to learn from the patient and their family what illness means and how it impacts the individual and family.

Yesterday, we met our families for the first time. Dr. Arno Kumagi, Director of the Family Centered Experience program, opened the evening's events with this basic framework. Doctors and patients view the problem or discomfort in two different perspectives. The physicians see the problem as a disease: the medical conceptualization of the process based on theories of pathophysiology. The conversations about disease are rooted in science, statistics, epidemiology, and pharmacology--all with their own specific terms and numbers. Patients see the problem as an illness: the subjective experience felt by the patient. The language of the patient is very human using words to describe feelings of loss, pain, discomfort, loneliness, alienation, and is based on language we use to communicate with other each other everyday.

Here is the example Dr. Kumagi used:

Breast Cancer as a Disease: A malignant transformation of cells within the breast that is characterized by a lack of differentiation, invasiveness, and metastese to distant organs.

Breast Cancer as an Illness: A terrifying condition that may fundamentally threaten a woman's perspective of herself and her relationships with others, her health, her sexuality, her future plans, aspirations, and her very life itself.

The Family Centered Experience helps us nurture our sense of empathy and compassion. With patients and their families as our teachers, they will help guide us on our exploration on the meaning of illness, the doctor-patient relationship, and the ripple effect of illness and how it affects a family through their stories and experiences.

Third year medical school students have said that when we start seeing patients in the wards, we will always remember our Family Centered Experience volunteer families. We will see them and their experiences in our new patients. I cannot think of a better way to learn and experience patient-centered care. We not only get to hear the stories of our families, but for a short time, we get to experience illness with them too. I'm looking forward to my first home visit!

Do you all have similar program within your curriculum? How would you teach patient-centeredness? Can you think of any improvements to the Family Centered Experience program?

Patients Take Center Stage in Gawande's Writing

It's been nearly three weeks since Atul Gawande's article, "The Cost Conundrum," was published in The New Yorker. But the buzz and excitement has not even begun to dwindle. On the contrary, my friends who never paid any attention to health care are now asking me questions like, "So, what's with the health care costs in the US?", "What is Obama talking about?", "Dartmouth Atlas? What is that?", "Is the US going to get universal health care?", "Can we fix the incentives to reduce waste?", "Is the overuse mainly a result of practices of defensive medicine?"...

To all of my friends who have asked me questions, thank you and keep them coming! As a very soon to be medical school student, I care a great deal about health care. While I understand everyone has their own passions, it has always surprised me by how little people cared about a system that everyone has had experience with. But, thanks to Atul Gawande, I now have an excuse to blabber on ad nauseam about health care to all!


Word Cloud from Atul Gawande's "Cost Conundrum" piece


Word Cloud from Atul Gawande's University of Chicago Pritzker School of Medicine Commencement Address

Why the sudden shift in interest? The facts that Atul Gawande is a eloquent and powerful writer, Obama has made Gawande's article mandatory reading for the White House, and that it's all over the news are important factors. However, for the first time, I think the health care reform agenda is being painted in a new light. Sure, insurance and coverage are still big topics; but there are new ideas being tossed around like quality, patient-centeredness, culture of medicine, and team work. Just take a look at the word clouds of Gawande's pieces!

Most importantly, patients are now a big part of what many see as the pathway to a better health care system. What do patients need and want? How can we as health care providers and engineers of the health care system provide better care for the patients? Since we are all going to be patients at some point in our lives, these arguments hit a very personal chord. Hopefully, as we continue to search for the best health reform plan, we can all dig deep and remember the true purpose of health care and let that notion guide us.

Thanks to Ben Tseng for sending me this piece in the Washington Post with the Gawande word clouds. These images are all too powerful!

Here is another great related Atul Gawande piece that focuses on quality: "The Bell Curve" published in The New Yorker.

JAMA's "A Piece of My Mind"

What do toenails have to do with patient-centered care? Read last week's "A Piece of My Mind" column titled, "Beyond the Numbers," written by Dr. David Wu in JAMA here and share you thoughts on the blog!