End of Life Care: Does it ever get easier?

May 9, 2011 was the first day of my third year of medical school, first day on the cardiology inpatient service, and the first day I met Ms. W, my first patient. Ms. W was a 77 year old woman with COPD, right-sided heart failure, pulmonary hypertension, and was in the ICU for ARDS due to spontaneous hemorrhage of unknown etiology. Because taking care of Ms. W would be challenging and overwhelming, my senior resident and I walked into Ms. W’s room together for introductions.

I naively expected to see a charming elderly lady who was just a little short of breath. However, one could argue that formal introductions were not needed because Ms. W likely never even knew we had walked into her room—she was on a ventilator and thus was heavily sedated. Nevertheless, Ms. W was very much present. Her gray hair was pulled back in a high loose ponytail, her hands were warm and her head bobbed up and down with each breath. She would inconsistently raise her eyebrows at the sound of her name and her tongue would slide towards whichever side her body was turned on. Despite the lack of any form of acknowledgment at our first meeting, Ms. W made a significant impression on me because just fifteen years earlier, my grandmother, who was 77 years old, was also in the ICU heavily sedated and dependent on a ventilator.

I worked diligently to take care of Ms. W. Every morning, I cheerfully greeted her, carefully checked her heart and lung sounds, confirmed the presence or absence of distal pulses, monitored the position of her endotracheal tube, checked every inch of her skin for signs of rash or pressure ulcer, and recorded her ventilator settings. As part of my morning ritual, I crossed my fingers before picking up her record book of ventilator settings hoping to see a positive trend towards recovery over time. I zealously poured over books and primary literature to understand the complicated management of her cardiac, respiratory, and renal disturbances. Perhaps it was selfishly motivated, but I felt committed to Ms. W. I strongly believed that if I could heal Ms. W, I could make up for my lack of understanding and inability to help my grandmother fifteen years earlier.

As the days passed, there were no signs of improvement and there were plenty of subtle hints that even a modest amount of recovery was unlikely. Managing her fluid status with changes in either direction only made things worse. Family meetings were initiated. I stood in the shadows as difficult conversations uncovered internal family tensions between honoring Ms. W’s understood wishes and managing Mr. W’s feelings of loss. With each passing day left without a decision about our next steps, Ms. W steadily and slowly declined. Her ventilator settings started to uptick towards the need for more aggressive support, her kidney function was slipping, and the color of her feet became mottled. It was finally decided that it was time to let Ms. W go. Because Ms. W was my very first patient, my senior resident insisted that I join the family as they said good-bye.

The family, hospital chaplain, senior resident, and I all gathered into Ms. W’s room. Slowly, one by one, the beeping and whirring of the machines helping Ms. W stay alive were shut off. The endotracheal tube was removed and the only sounds left were short exhales of air and muffled sobs from Ms. W’s family. The sight of Ms. W’s family quietly and lovingly saying good-bye to her instantly transported me back to my grandmother’s hospital bed. Without consciously being aware of my own thoughts, I too began to sob as little bits and pieces of the past and present intermingled. I was not there when my grandmother passed away. But, simply transposing my father and mother’s faces onto Ms. W’s daughters felt all too real.

In just moments, after a few sputtering coughs, Ms. W stopped breathing. As I stood alone in my corner of the room shifting in and out of my own thoughts, I remembered that it was my father’s birthday--an overwhelming coincidence that made things too personal. With this realization, I said my good-byes to Ms. W and her family and then stepped out of the room rushing to find some privacy. All of the bathrooms were occupied, so I dashed into an empty family waiting room. I closed the door. I grabbed a box of tissues in one hand and held onto my cell phone with the other as I began to cry and wail. While I rationally and clinically understood the importance of discontinuing aggressive treatment for Ms. W, I could not resist feeling like I had failed her, and by association, failed my grandmother.

After gathering some composure, I loosened my grip on my cell phone and called my mother. She was away in China, but I ignored the inconvenient time difference because I needed to hear her warm and comforting voice. She explained and described how hard it was for us to let go of my grandmother. My mother assured me that it was the right thing to do and it was not a failure. My grandmother never wanted to be in the ICU and we had already disrespected those wishes for 200 days. She was ready and as honorable children, my parents had to let her go. Hearing the words that I myself have advocated for in regards to end of life care while working in the area of quality improvement of health care delivery, I calmed down and regained my strength.

My month on cardiology was only the beginning of a year of dramatic change and growth. By the end of my cardiology month, my clinical knowledge had increased exponentially. But, I can’t confidently say that I achieved similar emotional maturity. Ms. W was only the first of a total of four patients I lost that month (I have since lost another three while on surgery and lost my dog whom I was medically managing remotely as she succumbed to mesothelioma). On one hand, I have learned to harden my heart, for self-protection reasons, as I have not shed another tear for my patients. But, on the other hand, my great exposure to death has not made leaving the hospital when I had an unstable patient or losing patients any easier. Of all of my patients, the faces and narratives of the patients I have lost are those that I remember most vividly. The clinical courses and what I could have done differently, to some extent, haunt me. Consequently, the feelings of failure are always hovering and have shaped all of my future difficult patient experiences. Selfishly, I am drawn to more aggressive and alternative treatments despite promised or lack of promised outcomes.

Will my beliefs and instinctual emotions ever align? As I continue in my training, perhaps I will achieve a better balance between the science of medicine and the humanistic relationships with my patients enough to step away from my own selfish discomfort with failure. Will more experience become the evidence I can depend upon when making future clinical decisions? Because death and dying are fundamental aspects of medicine, for the sake of my patients and my own well-being, I certainly do hope that time and experience will foster the strength to be my patients’ guide through difficult times. Of all things, this is the best medicine that I can provide.

Martin Luther King Jr. Day: Socioculturalism in Medicine

When you are born with yellow skin and black hair into a multicolored country, socioculturalism is a daily reality. Although my parents label me as an ABC (American Born Chinese) with amusement, unbeknownst to them, every day is a continuous combination of integration, negotiation, and assessment of how my decisions and actions define who I am. For example, if I choose Peking duck over sirloin steak for dinner, does that make me more Chinese? Where did this preference for a northern Chinese delicacy even stem from? My parents are from Shanghai, so my preferred protein should really be freshwater shrimp. Of the dance styles that I enjoy the most, my decision is straddled between Chinese and hip hop. When I’m seeking symptomatic relief from colds, I instinctually reach for Acetaminophen, Ibuprofen, and Phenylephrine. But, for sore throat relief specifically, my first line treatment of choice is Nin Jiom herbal lozenges and syrup. Asian Americans are predisposed to specific cancers and there is an overwhelming prevalence of Hepatitis B in the Asian American community. Because my diet is probably closer to the average American diet, what disease risk factors and predispositions do I actually have?

As illustrated above, I am socioculturally stochastic. Even the best statisticians would not be able to make any sense of this variability and extract a reliable pattern to predict my future actions. While I have never felt intimately tied to my ancestral culture, my physical appearance is a daily reminder that there is no escaping it. Despite my inability to lean one way or the other, whether I like it or not, I am American, Asian, and Chinese. Although I have traveled extensively around the world and have lived in several microcultures within the US, it wasn’t until I traveled to Ghana that I began to understand the significance and potential consequences of my blended identities within a broader context.

Wherever I walked in Ghana, people around me would whisper, mutter, scream, and shout the word, “Obroni,” which roughly translates to white person. Within days, I responded to “obroni” faster than my actual name. And after walking into an internet café, one of the most cosmopolitan buildings in the city, I quickly realized that I was in Ghana not just representing myself, but also my family, my school, my country, my ethnicity, and perhaps even all peoples of the world who have yellow skin and black hair. That’s a lot of responsibility for one person. Did I ask for this leadership role? If given the choice behind the proverbial Rawlsian veil of ignorance, would I choose Asian American physical features if I knew that my actions would forever shape how others perceived all those who merely looked like me?

This new inherent responsibility did not directly dictate my behavior while I was in Ghana. However, I do recall expending more effort describing the Asian countries I had visited, explaining why I primarily use English and not Chinese to communicate with my parents, and searching the entire city for ground pork and Tostito chips so that I could make Chinese dumplings and guacamole to share, respectively. The learning and exploration went both ways. By participating in health fairs at local churches in Ghana, I learned that measuring blood pressure on Ghanaians was slightly different from what I had grown accustomed to doing. Blood pressures tended to run higher in Ghanaians, so I had to make minor modifications in my use of the sphygmomanometer. These behaviors only seemed natural as I tried to absorb as many of the cultural nuances of Ghana. I was sure that this blatant sociocultural exchange would end as soon as I returned to the US because I’d be reunited with “my people,” people who understood me.

However, when I finally did return to the US, I realized that my sociocultural position here at Michigan is not too dissimilar from Ghana. Similarly, in Michigan, I have not only a lot to share, but also a lot to learn. I am one of a few Asian Americans in the school, one of a handful of students who attended college in the Northeast, and just one of a pair of students from Boca Raton, Florida. Just like in Ghana, my opinions and behaviors are important learning experiences from the more grandiose displays such as choreographing and performing a Chinese drum dance at the biannual Biorhythms show to more subtle mediums such as sharing cultural foods and my opinions within our small groups. Because I am unique and represent an eclectic combination of experiences and influences, that intrinsic responsibility I felt in Ghana is always with me. I am inherently a sociocultural leader, and I must confess that I spent much of this first semester struggling with those responsibilities.

It wasn’t until I took some time to reflect upon the significance of Dr. Martin Luther King Jr. Day that I resolved my inner conflict of being appointed a sociocultural leader without ever asking for such responsibilities. In 1963, Dr. Martin Luther King Jr., delivered his watershed, “I Have a Dream” speech. He described a future where the colored people of the nation could walk side by side with the white—a harmonious existence. Today, with an African American Commander in Chief, we can say that we have truly come a long way since 1963. However, I’d argue that we still have a lot more work to do before we achieve the future that Dr. King described. In regards to health equity specifically, the color of your skin is still the strongest predictor of health, not cholesterol levels, blood pressure, or hemoglobin A1c levels as one would suspect. Today, we are walking together, but I cannot say with confidence that we are talking and listening. We are not learning from each other.

Medical school admissions committees work very hard to construct a diverse class. But, we are failing at taking full advantage of this deliberate design. We cannot simple wait for required activities to engage in diversity. And even during such events, it feels like we passively wait for experiences and opinions to crash into each other to hopefully reach a blended resolution. In lectures, diversity is treated like an afterthought. We are constructing more barriers to understanding health equity when we are presented with racial, ethnic, and gender epidemiological data placed only within the biomedical context.

Yes, it is true. I physically appear different from the majority of my classmates and faculty at the medical school and carry the responsibility to speak up to share my point of view. But, I am not alone. I am not the only student with this burden of being a sociocultural leader. This is a leadership burden that is shared among all of us. We all must accept the inherent challenge to listen to others and share our experiences. We should acknowledge differences and carve out the best ways to utilize and understand those differences. That is how we will engage in diversity. That is how we will be able to better understand health equity challenges. And that is how we will together achieve Dr. King’s dream.

If not for our personal benefit, we owe it to our future patients and the greater goal of achieving equitable health care to step up to this leadership challenge instead of asking, “why me?” At the very least, as sociocultural leaders and the future leaders of medicine, we should take some time within our busy days to ask each other questions, respect disagreement, and truly listen and share.

Dealing with Culture Shock: The Aviation and Health Care Industries

One of my favorite things to do is travel. Traveling provides me with an unmatched exhilarating feeling of adventure. Whenever I casually walk down an unknown bustling street, my senses are overloaded with new sights and smells. This kind of excitement is unbelievably addicting. My mind just races with comments. What is that brilliant green dress she’s wearing made of? Can you really eat that? Whoa, where did all of those chickens come from? Did those kids just point and laugh at me? Is his cell phone really that tiny? Why is everyone so tall?

Do I ever experience culture shock? Sure. Every new environment will take some time to adjust to, but the challenges of getting around and living outside of my comfortable apartment in Michigan is all part of the fun of traveling.

What about the culture shock of transitioning from one industry of work into another? The University of Michigan IHI Open School Chapter’s Monthly Speaker Series guest, Gary Sculli, probably does not have many positive feelings associated with his move from the airline industry into health care. Gary Sculli is currently a Program Manager at the National Center for Patient Safety in Ann Arbor, MI. He has both extensive experience as an airline pilot and is a registered nurse.

As Sculli starkly contrasted the two industries, it was clear that the airline industry and health care were two very different beasts. While it may have been difficult for me to adjust to taking cold showers while I was in Ghana, “traumatic” would be the word I’d choose to describe a move into health care from the airline industry. Here are some differences at a quick glance.

Airlines	Health Care
Team training	Hierarchical barriers
Human Factor awareness	Human Factors NOT emphasized
Standardization	Varying degrees of standardization
Checklists discipline	Expectation to complete outside functions
Formalized recurrent training	Haphazard recurrent training
FAA mandated performance checking	Absence of mandatory performance checking

Not only are there differences in work environment between the two fields, but health care is associated with higher error rates—rates that make up the harrowing statistic of up to 98,000 deaths a year due to medical errors, published in the IOM Report, To Err is Human in 1999. A recent study evaluating quality improvement in health care’s progress since the publication of To Err is Human reports the sobering fact that not much has changed. Just as many people become victims of medical error today. While a lot of improvements have been made, we still have a long way to go. According to the Joint Commission, at the root of many of the errors we see in health care are communication and organizational culture. So, what health care needs is a cultural transformation. With the likes of Gary Sculli, we are well on our way on the journey towards safer health care.

Being flexible and keeping an open mind are two important items to pack when traveling to ensure a positive experience. Gary Sculli surely did not forget to pack these on his move. He took the lemons he found in health care and made lemonade by applying effective communication and leadership strategies practiced in the airline industry to health care in order to make health care more effective and reliable. In his discussion, Sculli outlined the concept of crew resource management as a team building effort to not just strive towards eliminating error, but more importantly, how to manage error when it does occur. He also discussed different leadership styles, being a dictator or facilitator, and the health care consequences associated with each. What else is needed to make health care more reliable? Sculli illustrated the need to redesign health care to support “situational awareness,” being able to perceive, comprehend, project, make decisions, and perform actions on variation in one’s environment. Check out the University of Michigan IHI Open School website for more information on topics discussed at the Monthly Speaker Series event.

The application of many of these airline tools have been able to make some great changes in health care. With the use of checklists, many hospitals have been able to effectively standardize procedures and eliminate hospital acquired infections. Through communication training among the staff of the operating room, physicians have been shown to be more adept at soliciting feedback and taking appropriate actions, while nurses and other members of the OR team have moved away from the “hinting and hoping” strategy of declaring an error to providing feedback in a direct, concise, and specific manner.

Perhaps what I love most about traveling is that once you move past the initial jolt of shock that the differences of a new location can give you, people are really all the same. I’ve learned so much from the cultures and people I have interacted with on my travels and have adopted some of these practices into my daily life. Personally, these adopted practices have made my life better. Is health care really so different from the airline industry? They are both fields that include teams of individuals performing highly specialized skills with extreme risk and small margins of acceptable error. With the help of inspiring leaders like Gary Sculli, health care is adopting the best practices from other industries. If we keep moving in this direction, I’m sure the next culture shock health care will give is one of success that we can all be proud of.

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?

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.

Breaking News! Medical Students Shadowing Nurses

I just received this message from one of our Deans of Medical Education. Even though I have my first anatomy practical today, perhaps this is a sign that despite all of that, today will be a wonderful day!

Subject: New Required Educational Experience - Nurse Shadowing in M1 Year

Date: Sep 25, 2009 9:52 am

Message:

Dear M1 Class:

This year we are offering you a new required educational experience to complete during your M1 Year. You will each spend one half-day shadowing a nurse in the UM Health System.

Today’s health care delivery system challenges all health care professionals to provide care that is patient-centered, efficient, effective, safe, and timely. To meet this challenge, collaboration among members of health care teams (including, but certainly not limited to, physician and nurses) is vital. In at attempt to educate medical students on the role of nurses in the health care team as well as to foster open communication and teamwork between health professionals, this shadowing program – created originally by medical students – was run as a pilot last academic year. We hope that you enjoy the program as much as students last year did, and take something away that you can use for the rest of your careers as physicians.

We developed the following learning outcomes for the experience:

* Knowledge of what nurses bring to a health care team
* Ability to communicate effectively with a nurse
* Respect for the knowledge and skills of nurses
* Openness to learning about patient care from nurses

We will be asking you to complete a pre and a post-assessment of this experience. The post-assessment will serve as your documentation of completion of the required experience.

Sincerely,
Casey White, Ph.D., Assistant Dean for Medical Education

Little things like this that remind me why I decided to come to Michigan for med school! Do y'all have programs like this in your schools?

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?