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6c40d742c112a378e187813655139587-huge-aaWhen Aakash Shah's patient-mentor told him he wished his diabetes was more like tuberculosis, Aakash was eager to get an explanation. Here's the story of how a patient's childhood TB and adult-onset diabetes illuminated the holes in our healthcare system.

By Aakash Shah

“Mr. Williams” is a storyteller. Each time he catches my gaze fixed on a picture frame, he lets out a knowing sigh and then launches into the memory behind each photo. There was Michael’s graduation, Nathan’s wedding, Lauren’s first child, and the entire family, three generations in all, gathered together around the Christmas tree. Mr. Williams has been blessed with a beautiful family – a wife of 55 years, four sons, three daughters, and nine grandchildren – and he knows it. As it turns out, he knows a bit about what ails our healthcare system, too.

As a first-year medical student, I’m attracted to primary care for its strong physician-patient relationships, but my exposure to it is limited. Growing up, my visits to the pediatrician were few and far between, and I had no interaction with other doctors. That all changed during my first month of medical school, when I met Mr. Williams’ primary care physician through a course designed to allow students to view our healthcare system from a patient’s perspective. We decided that I would follow Mr. Williams over the course of the year to better understand his primary care experience. A few weeks later, I found myself sitting in Mr. B’s living room drinking tea – green is his favorite – and enjoying Mr. B’s life story.
While recounting a memory about a visit to the hospital as a teenager, Mr. Williams joked that he wished diabetes were more like tuberculosis. Glancing at his medical history, I noticed that he had an episode of TB when he was in high school and had been diagnosed with diabetes about four years ago. Feeling as though I had missed the punch line, I asked him to elaborate. He explained how he felt that the healthcare system handles cases of tuberculosis much better than diabetes.
Those words stayed with me as I rode the elevator down from his apartment later that evening. It struck me that Mr. Williams was describing what Sendhil Mullainathan, the MacArthur Award-winning Harvard economist, has dubbed the “last mile problem.” The medical community has invested a tremendous amount of energy, creativity, and resources into finding solutions to diseases like TB and diabetes. The effort has paid dividends. It has taught us how to harness the power of antibiotics, insulin therapy, and a plethora of other life-changing treatments. In the case of TB, the healthcare system follows the patient and sees him through until the disease is gone. However, in the case of diabetes, we’ve yet to go the last mile and perfect the science of chronic disease management.
Though I’m not sure exactly how to go the last mile on diabetes care, I know that the road ahead is through primary care. And like many others who see the potential of primary care to revolutionize healthcare delivery, I’m excited for the journey.
This piece first appeared on Progress Notes in 2011 when Aakash Shah was a first-year student at Harvard Medical School. 

Read other patients' perspectives on the healthcare system:
Posted by Sonya Collins on Apr 27, 2017 2:12 PM EDT
096926b7cb6cc1e7478aefd7f3c820c1-huge-amA medical student and aspiring family physician asks his future colleagues in other specialties not to let all the social justice work fall on the shoulders of primary care providers. 

By Amulya Iyer

Mr. FM is a charming, gregarious, middle-aged Dominican man who lives with his wife and children in upper Manhattan. He is generally happy and healthy. Though he has an enlarged prostate, this shouldn’t prevent him from living a full life. In an ideal world, I would never have met him as an inpatient, but unfortunately, he came to the emergency room with dangerously high potassium, after a month of vomiting and a week without urinating. His untreated prostate had led to urinary obstruction. Mr. FM was hospitalized and dialyzed, but never regained complete kidney function. When he was discharged with nephrostomy tubes on both sides - catheters inserted in the kidneys through the skin that drain urine into a bag outside the body - he was at risk of being on dialysis for the rest of his life.
During his hospitalization, I spent a lot of time with Mr. FM, partly because medical students have time to spend with patients, but also because I liked him. He is an affable, intelligent man, with a supportive family. His wife and brother-in-law were always at his bedside bringing him snacks and coffee that he would lovingly force upon me. When I asked him why he hadn’t gone to the doctor sooner, he responded that he did not like doctors and never had a good experience with them. In fact, the only reason he came to the emergency room at all was because his wife dragged him there.
Looking back in his chart, however, I saw several visits to primary care doctors over the last year that repeatedly noted his enlarged prostate and his medication noncompliance. Yet none made any reference to the potential barriers to his compliance. Maybe his noncompliance could be chalked up to the language barrier. Mr. FM speaks Spanish only. Maybe he didn’t understand how or why he had to take the medication. Whatever the case, the doctor’s job isn’t simply to know that you treat an enlarged prostate with an alpha-blocker. Any computer can tell you that. And clearly that knowledge had not been enough to prevent the potentially life-threatening repercussions of the condition. It is the doctor’s job to think of Mr. FM’s illness in the entire context of his life.
Throughout medical school, I saw scenarios like Mr. FM’s repeat themselves again and again. So many advances in science and medicine are inaccessible to patients because the healthcare system isn’t designed to include time to educate and advocate for the most vulnerable. As a primary care doctor, I want to be a patient advocate and combat the systemic inequality patients face.
Since expressing my desire to go into primary care, however, I have received various responses from my classmates, the most puzzling from a student applying to dermatology who said, “Wow, that’s really good of you.”
But it doesn’t feel like a sacrifice, or a “good deed,” to forego the higher-paying fields that make up most of my school’s match list - a school that tried to eliminate the family medicine department just last year. I love people and hearing their stories. I love the challenges of motivational interviewing. And I love grassroots community engagement, which is possible in primary care.
Primary care is often held up as a beacon of morality, a field that “righteous” students pursue, but social justice in medicine should be the purview of every field. All of medicine and healthcare should be altruistic and dedicated to service. The homeless man who sleeps in Central Park and the man who looks over it from his penthouse apartment both need primary care, but they may also both need dermatologists - or urologists in the case of Mr. FM.
Despite following him for nearly two weeks as an inpatient, recommending nephrostomy tubes and outpatient prostate surgery, the urology team would not see Mr. FM for follow-up because they didn’t accept his insurance. So rather than have follow-up with a doctor walking distance from his home who knew his entire case and had access to his records, Mr. FM was forced to see a urologist 45 minutes away. And he only got that appointment because of the relentless phone calls that another medical student on the team made. On the day of Mr. FM’s discharge, with tubes sticking out of his kidneys, I couldn’t help but be disappointed about the additional barriers we were placing in front of him.
I’ve been in touch with Mr. FM for the past few months through phone calls and text messages, ensuring that he understands his medications and attends his appointments with a complex array of specialists. When I met up with him at a recent appointment, he was doing quite well. I know when I become a family doctor and have thousands of patients, it will not be possible to follow each one so closely, to walk them through every step of their care. That’s why we need system-level changes, which won’t happen without advocates throughout medicine - not just primary care.
After all, in medicine - not just primary care - every human being is a potential benefactor of your skills and has a right to the care that you can provide. Of course, I don’t expect all my classmates to enjoy the same things I do and go into primary care like I will. But I would like to make a plea that every medical school graduate be thoughtful about the way they practice medicine, the patients they treat (and the ones they don’t treat), and the imperative they have to use their training and skills to address the irrefutable health care disparities in our country and around the world.

Amulya Iyer is a fourth-year medical student at Columbia University and plans to pursue a residency in family medicine.

Posted by Sonya Collins on Apr 20, 2017 10:59 AM EDT
4665fcefa45d8a892d09808b1059a4ae-huge-peA nursing home resident and outspoken advocate for other residents explains how trauma, which is all too common among her peers, can lead to misdiagnoses and inappropriate care. The solution, she says, is trauma-informed primary care in nursing homes. 

By Penny Shaw, PhD

Making the transition to life in a nursing home can be highly stressful. It’s a dramatic life change that new nursing-home residents are not prepared for. Deterioration in health, feeling abandoned by family, wanting to remain at home in a familiar environment, loss of privacy when sharing a small space with a stranger, a shattered sense of security and role in the community – these are all part of the transition into a nursing home. The loss of choice and control to choose previous routines and preferences, as well the numerous institutional rules, policies and practices to follow can lead to adverse emotional reactions. Primary care physicians using a trauma-informed approach to care successfully address feelings of being overwhelmed which, in long-term care facilities, are referred to as relocation stress or transfer trauma.
Transfer trauma has a wide range of physiological, cognitive, mood, behavioral and social manifestations: fatigue, appetite and digestion problems, headaches, sleep disturbances, confusion, difficulty concentrating, shock, anxiety, depression, and poor hygiene.
I personally suffered from transfer trauma when, after a year in a respiratory hospital where I knew the staff well, I was transferred to a nursing home. I remember the fear I had the night before leaving, when I talked to my night nurse about not knowing where I would be going. My stress was such that upon arrival at the nursing home, I’m told that I was confused and waving my arms. I had no idea where I was. I didn't talk and the staff gave me a communication board. They thought I was unable to speak because of a tracheotomy I had. But actually, I was traumatized. My functioning declined. I had been active in the respiratory hospital – had gotten up to do watercolors, talked to staff and patients, but now I was bedbound. As I later learned from reading my medical record, I had been misdiagnosed with psychosis and given an antipsychotic I didn’t need.
Other residents in the facility where I live are often traumatized. An older woman unable to walk after a fall wanted to go home and was sad, thinking this was the end of her life. Another woman was distraught saying she'd lost her home, now lived in a cubicle and was alone, as her daughter wasn't visiting her enough. A woman asked me her first day with us "Is this a prison? Can I leave if I want to?" I reassured her she could. A man puzzled over how he had survived a major head injury, only to end up in a place where people told him what to do. Another man, tragically, who could not accept that his wife had placed him in a facility, deteriorated and died.
Primary care physicians familiar with trauma recognize the varied symptoms and use a trauma-informed approach for diagnosis and treatment. During assessments, they look for signs of trauma. They ask questions of residents. In clinical decision-making, they identify symptoms indicative of trauma and diagnose correctly. They realize that mood disturbances might not be a sign of mental illness like bipolar disorder, but instead are normal given the circumstances. In this approach, physicians use the appropriate standard of care – non-pharmacological first, avoiding unnecessary drugs with a potential for adverse side effects, thus preventing additional health problems. Trauma-informed care plans connect physical, cognitive, mental and behavioral health to promote healing, eliminating or delaying progressive disability.
Trauma-savvy physicians also provide clinical leadership, guidance and support to staff in training on trauma and trauma-specific interventions. Education changes staff perspective. They become more sensitive, caring and tolerant of symptomatic behaviors, no longer seeing residents as behavioral problems, complainers or troublemakers. Physicians also help staff develop competencies in trauma-specific treatment techniques to develop coping strategies including emotional support, by talking to residents so they can express and have their feelings validated as normal. Other techniques include orienting, supporting and reassuring residents that they understand what happened to them. These interventions start the process of re-establishing a sense of physical and psychological safety and developing coping strategies. Giving residents a voice and some control reduces the power differences between staff and residents. Empowering residents can counter feelings of powerlessness and decreases learned helplessness and unnecessary dependency.
As I have seen in my facility, residents can learn a new outlook and become more optimistic and hopeful about recovery. They become more motivated, build a new lifestyle as close as possible to what they lived before, and usually accept their situation. The journey of recovery is incremental, and if distressing symptoms persist, professional psychotherapy is arranged.
Trauma-informed primary care physicians also realize that a nursing home is a resident's home, and that environment affects mental health and well-being. Design features of the built environment – both architectural and interior – have clinical utility. Windows with exterior views reassure residents they're still part of the larger world. Natural light, pleasant resident rooms with soothing paint colors of blues and greens, and homelike furniture are comforting and uplifting. Access to the outside and gardens provide a welcoming, restorative encounter with nature. Giving residents a choice in wall art and room furnishings and providing operable windows for fresh air give residents a sense of personal control over their environment. Physicians should encourage facilities to allow for patient choice in the surrounding environment as much as possible.
The significant effects of trauma-informed care, policies and environment are numerous: improved physical and cognitive functioning, psychological and emotional stability, fewer maladaptive behaviors, improved social interactions, staff and resident satisfaction and lower mortality rates.
I encourage primary care physicians, especially those who care for patients in nursing homes, to seek more information about trauma-informed primary care. Too often health care providers jump to the conclusion that people in this population simply have mental illness or cognitive decline when it is trauma causing these symptoms and it can be treated.
More information on trauma-informed care is available at the Substance Abuse and Mental Health Services Administration's National Center for Trauma-Informed Care and the National Council for Behavioral Health's Trauma-Informed Primary Care initiative.
Penelope Ann Shaw, PhD, is a former teacher of English as a second language and a doctor of French language and literature. Now a nursing home resident, Shaw is a board member of the Massachusetts Advocates for Nursing Home Reform and of the Disability Policy Consortium of Massachusetts. She was named a “Trailblazer in Elder Care” by the U.S. Department of Health and Human Services’ Administration on Aging’s Administration for Community Living. She is a 2016 recipient of a National Consumer Voice for Quality Long Term Care Leadership Award.

Posted by Sonya Collins on Apr 13, 2017 11:56 AM EDT
67f985037329d0cf56e11dad0cd8eb8e-huge-reFriday, April 7, is World Health Day. This year's theme is depression, the leading cause of illness and disability worldwide. In observance of World Health Day, WHO is encouraging people to speak openly about depression and suicide through their #LetsTalk hashtag. In that spirit, today on the blog, a medical student speaks openly about her ongoing battle with depression and suicidal thoughts. She encourages others to speak out as well.

By Rebecca Powell

There are two versions of me.

On the wards, I am the student who shows up early, the enthusiastic learner, the integrated helpful teammate, and a friend to patients. I am known for my big smile, even among strangers who do not know my name.

At home, I am a dark cloud, crying in bed with the covers over my head so that my roommate will not overhear. I sleep too much, eat too little, and struggle to find interest in any non-medical activities. I know the criteria for major depressive disorder. Since starting medical school, I have full-blown, rip-roaring, unrelenting clinical depression.

This little dark cloud has called the suicide crisis line three times in the past school year. Twice while working the long hours that are the norm during a third-year surgery clerkship and once, ironically enough, while working on the inpatient psychiatry unit with suicidal teenagers. I have a positive family history for major depressive disorder, and had several episodes of depression during stressful times in high school and college. During college, I thought I had found the depths of my depression, but I was wrong. It was medical school that pushed me beyond the point of passive suicidal ideation to active suicidal planning, which is a huge, dangerous leap that, as I interviewed psychiatric inpatients, made me feel I should be sitting in their seat.

What got me here? Why the change for the worse and why, when I was studying the very disease I was suffering from, could I not receive the help I needed?

It wasn’t until after my second call to the crisis line that I recognized I needed to be more proactive about my depression. I was working long hours and under constant stress to perform. I had very little autonomy, and was worried that I had made the wrong career choice. In addition, the transition from the first two years of medical school, which took place in an academic lecture hall where I could be a passive learner, to the third year of medical school, where I was now standing shoulder-to-shoulder with the medical team, was not easy. I made an active effort every day to get up in the morning, shower and look presentable, pay attention on rounds and be alert to any “pimp” questions thrown my way. Like a ritual hazing, “pimping” students is a key component of teaching on the wards. It’s when, as Dr. Druv Khular described in the New York Times, doctors ask students “a rapid series of questions, from thought-provoking and relevant to esoteric and unanswerable[, which continue] until teachers run out of questions or doctors-in-training run out of answers.”

Introverted, shy, and depressed, I did not appreciate the sudden expectation to be an active member of a team and sometimes the center of attention. It took all the mental and emotional energy I had to be present all day with the medical team and our patients. Afterwards, I felt exhausted and defeated. I would go home and go straight to bed. Then I’d get up and do it again. It was a vicious cycle with no place for self-care. When I only had a few days to impress a preceptor, any time away from studying or the patient wards, I feared, would be detrimental to my grade.

So logistically it was difficult to seek help. I did not know my schedule more than a week or two ahead, so scheduling an appointment with a doctor was nearly impossible. Primary care providers and psychiatrists usually work 9 to 5, but I usually worked 6 to 6. I had gone into medical school wanting to help others in their greatest time of need, and now I couldn’t even help myself. And it was literally killing me to keep trying.

I waited to see a physician until I was scheduled to work the night shift several weeks after my second call to the crisis line. Instead of leaving the hospital after my shift ended at 6 am, I stayed on campus until later that morning when the clinic could fit me in. That way I did not have to ask my preceptor, who was grading me, to excuse me early or allow me to come to work late.

Even if missing work to see a doctor wouldn’t hurt my standing, medical training puts a lot of pressure on students not to appear weak. I felt that I was under constant surveillance, both by my classmates and my superiors. A budding physician needs to be impervious to psychological conditions, otherwise she will not be worthy of the profession. I worked hard to appear worthy.

Depression cannot always be seen on the outside, but I know I am not be the only medical student or medical professional who has felt this way. Statistics about health care providers and their mental health are thrown around all the time, including higher suicide rates among physicians. Some of my own classmates are fighting this mental illness. I don’t have the answers. I am still struggling with this myself.  But I am writing so that others won’t feel stigmatized or alone and might have the courage to advocate for themselves. I encourage students and preceptors to build an atmosphere of wellness within their sphere of influence, to be examples of self-advocacy, and to be sympathetic of others who may need support. Admitting you need help and seeking it is not a sign of weakness. It is a sign of strength, and it will serve you and your patients for the better. 

Rebecca Powell is a third-year medical student who will be pursuing triple board specialty programs in the fall. If accepted, she will be working towards becoming board certified in pediatrics, child and adolescent psychiatry, and adult psychiatry. 

Read more about depression on the blog. 

Posted by Sonya Collins on Apr 6, 2017 11:51 AM EDT
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