Category: Clinical

Categories
Clinical Reflection

The Importance of Geriatric Medicine

When the infamous question “what kind of doctor do you want to be?” has been thrown my way, I have typically responded by throwing out three fields of medicine that I currently find interesting: pediatrics, endocrinology, and geriatrics. However, while the usual response includes much satisfaction about 2 of my potential career choices—with lots of oohs and ahhs about the joys of treating children, and the approving nod for endocrinology because, hey, diabetes—the standard, usually skeptical, follow up question I receive is: why would you want to take care of old people if they are just going to die soon anyway? Isn’t that…depressing?

Despite these ageist misconceptions, the importance of the growing need for trained geriatricians in the U.S. cannot be denied. According to the Association of American Medical Colleges, the latest studies are suggesting that by 2025 the number of American baby boomers over the age of 65 will double, and become the fastest-growing age group in the country. This demographic will soon account for 20% of the nation’s population! We can see the practical results of this trend today, as Americans are clearly living longer, requiring assistance in managing chronic health conditions like hypertension, heart disease, diabetes, dementia, etc.

The most alarming fact? The American Geriatrics Society has estimated that 25,000 certified geriatricians are needed in order to provide quality care to this growing population, but currently there are fewer than 7,500 geriatricians in the U.S. In fact, only 44% of the nation’s 353 geriatric fellowship positions are even filled. Geriatrics is considered to be one of the most underrepresented specialties, even though geriatricians have been found to have high career satisfaction.

So, why the disinterest from budding physicians? Financially, geriatrics is often not considered attractive, particularly with nascent residents facing a looming amount of debt right after medical school. Most elderly patients have either Medicare or Medicaid, which have traditionally lower rates of reimbursement for physicians than that of private health insurance. Indeed, geriatricians, despite the extra years of training, have traditionally received less compensation than other subspecialists.

What can be done to help entice young physicians to this challenging field of medicine? While a restructuring of the current reimbursement difficulties would be an ideal fix to this situation, and would help entice young physicians to geriatrics, perhaps more immediately realizable goals should be considered in the meantime. For example, emphasizing the importance of geriatric medicine within medical school curricula is one alternative and realistic way in which to effect change. Students could learn of the intricacies and complexities involved in providing care to this population. This would be particularly relevant for students, as they are the generation of doctors which will be faced with treating a larger population of older individuals, given the statistics mentioned above.

Here is an even simpler idea: help people realize their passion for the field. Dr. Mitchell Heflin, MD, an associate professor of medicine at Duke University School of Medicine, said it best, “People in geriatrics are called to it.” A commonly cited influence for this career choice is meaningful interactions, particularly in childhood, with older populations. I personally can see why I am drawn to this field of medicine, as much of my happiness as a child (and up to the present day), has revolved around my experiences with the elderly. I remember every Sunday I would cross the street and have a spaghetti dinner with our elderly neighbor, affectionately known as Auntie Eva. She was a chain smoking, fiercely opinionated and loving German lady from Buffalo, who could make a killer homemade marinara sauce and meatballs. Even more influential, however, is the relationship I have with my now 83 year old maternal grandmother who has lived with my family since my birth. She not only always babysat me, but also taught me how to fish, ride a bike, tie my shoes, and crochet. Watching her gracefully age with a high quality of life through her 60s and 70s, and then seeing her current struggle with the beginning stages of dementia, has really made me reflect upon the importance of geriatric care in our society and my potential role in it.

So, while I’m not yet sure if geriatrics is in the cards for me, it is obviously a complex field of medicine, critical for the health of the older population and for the health and dignity of our society at large.

 

References:

https://www.aamc.org/newsroom/reporter/april2015/429722/fewer-geriatricians.html

http://health.usnews.com/health-news/patient-advice/articles/2015/04/21/doctor-shortage-who-will-take-care-of-the-elderly

Featured image supplied by the author

Categories
Clinical Emotion Reflection The Medical Commencement Archive

Compassion, The Heart of Medicine

Dr. Rob Horowitz is an Associate Professor of Clinical Medicine and Pediatrics, and is board-certified in Internal Medicine, Pediatrics and Hospice & Palliative Care Medicine. After 14 years of working as a rural Emergency Physician, in 2012 he moved his professional come to the University of Rochester Medical Center division of Palliative Care, where he cares for children and adults who have serious illness. Dr. Horowitz also established and served as Medical Director of URMC’s Adult Cystic Fibrosis Program from 1999 until 2015.

In addition to his clinical duties, Dr. Horowitz is Director of the Medical School’s Year 2 and Year 3 Comprehensive Assessments, which are longitudinal formative assessments of student communication skills, medical knowledge and professionalism utilizing patient-actor interviews, multi-source feedback, peer- and self-assessments, and other modalities. He also teaches medical students in multiple other small and large group settings and facilitates several groups for clinicians, including Balint groups for physicians and Nurse Practitioners, and a support group for Palliative Care Unit nurses, techs and others.

Hello Class of 2016 and hello to your family, friends, colleagues and dignitaries. What an honor, that you invited me to deliver your Last lesson from the University of Rochester School of Medicine and Dentistry faculty. It will be a brief one, less than ten minutes; and it will be a review, a reminder of what you already know. Or, and I say this with sadness and some urgency, it may be a reminder of what you once knew, and may be in the process of forgetting. This Last Lesson is grounded in words from Francis of Assisi, which I paraphrase here:

Work of our hands is labor.
Work of our hands and our head is a craft.
Work of our hands, our head, and our heart is an art.

THIS is the last lesson: doctoring is an art, a work of your hands, head and heart, or more prosaically, a work of skills, knowledge and humanity. This reminder is important, even for you, who were socialized here in Rochester, the home of biopsychosocial medicine. In fact, it’s a response to recent conversations I’ve enjoyed with many of you, who, poised for internship, wondered whether health-care-the-business has taken the heart out of medicine- the-calling. The answer is a resounding NO. But let me respond directly to your words, first about hands and head. Here are two quotes from you, representative of many others:

I just don’t know enough to be a good doctor.
I’m about to be revealed as a phony.

I respond with a story from long ago and yet not so long ago: twenty three years ago I was a Med-Peds intern here in Rochester, just completing my first Medicine rotation at Strong Memorial Hospital, when in Morning Report the chief resident asked me to offer a differential for the case. I was paralyzed. I had no idea how to explain the patient’s symptoms. I tried to smile and charm my way through it, but I stumbled and fumbled, until a fellow intern completed the task that I couldn’t. I felt ashamed…revealed as a phony, an imposter.

As you know, aversive conditioning is deep, and this experience stuck with me. In the succeeding years, whenever I saw a particular colleague who witnessed my humiliation on that day long ago approaching down the hall, I was tempted to, and sometimes DID, turn in the opposite direction, so I wouldn’t have to feel his scorn.

Sounds silly from this vantage, nearly a quarter century later, doesn’t it? In fact, a medical student suggested so last year in response to me sharing this story. He challenged me to find out if my impression was accurate. And so I did. Last June, seated behind me in Grand Rounds was that well-admired physician. I took a deep breath, turned around, and asked him what he recalled about that infamous incident, my unmasking. His response was, “Are you kidding, Rob? I was too busy feeling like a fraud myself to take
in anyone else’s difficulties! Sounds like we were in the same boat.”

What a gift of relief his words were! A few minutes into Grand Rounds, he put a ribbon on the gift when he tapped me on the shoulder and whispered, “Y’know, Rob, I’ve always thought you were a pretty smart guy.”

There are two morals here: First, you can’t pack all the information you will ever need into your head. In 1950 the doubling time of medical knowledge was 50 years; in 1980, 7 years; in 2010, 3.5 years. This means during your tenure here—whether 4 years or 13 years—the base of medical knowledge has more than doubled and, for some of you, several times over! So, of course, please learn from your knowledge gaps, and master how and where to seek answers. And please recognize that knowing it all is not the most important  measure of our competence as doctors.

Second, the collision between our cognitive limits and our inherent drive and perfectionism, which made this professional  achievement possible in the first place, is a perfect recipe for self-doubt and self-judgment. And if these become our lifestyle, we will live a  disheartening and depleted life. Please be kind to yourself, and find in your community colleagues and mentors who are open to genuine reflection. Don’t wait 25 long years, like I did, or forever, to make peace with your humanity.

Now, what about the Heart component of Doctoring? I will share two quotes from you, similar to many others:

I know empathy is important, but there isn’t enough time to be empathic.
I’m working so hard to be smart and productive, I’m afraid I’m losing my caring.

Let me respond with a second story, a fresh one about the profound opportunity for compassion in simple moments. Last Friday morning, into the exam room stormed my new patient, a 50-something year old woman I’ll call Wendy, who has widely metastatic cancer and severe pain, for which she was referred to me. You see, I’m a palliative care physician, and as such, I am a pain specialist. She sat opposite me and as she launched into her agenda, she leaned forward so far that I was forced to lean back.

She damned the medical system, and she cursed the siloed subspecialists, and she asked why the hell she should trust me, yet another siloed subspecialist, to help her, or to even care. I asked if I might share an observation with her. She nodded. I told her, “I want
to help make sense of what’s going on, and to care for you and help you, but your manner appears so angry, so critical, I am not sure how to reach through it to you. Can you help me?” She softened a bit, and responded, “I’m afraid that if I stop being angry, I’m going to cry.” I inched closer, until our knees were almost touching, and looking into her now moist eyes, I said, “Then cry.” She gasped and her head bowed, tipping forward as if she was collapsing, and to stop her descent, I reflexively leaned forward, until the tops of our heads were gently touching. We were posed like an A-frame, and she wept. I put my hand on her shoulder and told her, “I am with you, Wendy.” And between sobs, she stuttered, “Yes…now… I know.”

There are two morals here. First, you can choose to cultivate the habit of compassion. Indeed, I share this story not to show off my compassion-finesse, but to demystify, to define and to normalize it. We respond compassionately to suffering simply by witnessing it, approaching it, and inquiring about it. And by that alone, we offer healing. And it doesn’t have to take a lot of time.

Second, it is vital to be compassionate to both your patients AND to yourselves. Because just as you can’t possibly know everything that matters, neither can you possibly tend to all those in need. Please remember that you actually DO need to sleep and to eat,
to tend to your spouse, your partner, your children, your friends, your inner life, and your pleasures.

So, this last lesson is a reminder of what you knew when you first came here to enter this amazing, privileged profession: Hands, head and heart are all three essential to the art of doctoring. If you choose to make compassion your default mode, then you will know definitively—in your own heart—that health-care-the-business CAN’T take the heart out of medicine-the-calling.

You can only imagine how inspiring it is, from this stage, to look upon you, our colleagues. To celebrate you, to be awed by you, and to know with great confidence that your skillful hands, your brilliant heads, and yes—your loving, beautiful hearts will be a blessing to your countless beneficiaries, your patients, who now await your arrival. For this we are forever proud and grateful. Congratulations.

 

The Medical Commencement Archive, Volume 3, 2016

Dr. Rob Horowitz, MD
University of Rochester School of Medcine
Commencement Address

Categories
Clinical Reflection

Could I be wrong?

Physician overconfidence is thought to be one contributing factor to diagnostic error, and occurs when the relationship between accuracy and confidence is mis-calibrated.1 The relationship between diagnostic accuracy and confidence is still indefinite, but it is hypothesized that if confidence and accuracy are aligned, then appropriate levels of confidence could cue physicians to deliberate further or seek additional diagnostic help.2

A recent study by Meyer and colleagues, aimed at evaluating the relationship between physicians’ diagnostic accuracy and their confidence, found that physician confidence was related to how often they requested a critical additional resource. Additionally, the study found that diagnostic accuracy decreased when physicians were faced with more difficult cases, while confidence decreased only slightly with difficult cases. They noted that diagnostic tests were requested less often when confidence level was higher, regardless of whether or not that confidence was correctly employed. “In essence, physicians did not request more second opinions, curbside consultations, or referrals in situations of decreased confidence, decreased accuracy, or when diagnosing difficult cases.”3 The findings from this study suggest that physicians might not request the required additional resources when they most need it.

Students are often so sensitive to criticism that they are reluctant to give any to their colleagues. This is one area where the culture of medicine can be improved. By using feedback from others and self-reflection, we may be able to improve our diagnostic reasoning.

We are taught to think that everything needs to be rechecked and reconsidered when it comes from an outside source. But what if we turned that clinical skepticism inward? When you are right, you are going to save lives and figure out the patient’s problem. When this happens, it’s always going to be a wonderful thing. But how many more times can we get it right if we make it a habit to ask ourselves, “how could I be wrong here?”

Jason Benham said, “Your greatest weakness is often the overextension of your greatest strength.” Essentially, when a strength is over-extended, you get breakdown. But when a strength is turned into a stretch, and you’re flexible enough to bend, you will not break. Take time to occasionally step back from a difficult case, consult a textbook or run a different test, and make sure you are solving the correct problem. Mistakes will happen. When errors occur, acknowledge them, discuss them with colleagues and the patient, make efforts to correct it, and move on. In medicine, where the consequences of shortcomings and misjudgments can be dire, we can all benefit from encouraging more of these types of discussions.

References:

  1. Berner ES, Graber ML. Overconfidence as a cause of diagnostic error in medicine. Am J Med. 2008;121(5)(suppl):S2-S23.
  2. Graber ML, Berner ES, Suppl eds. Diagnostic Error: Is Overconfidence the Problem? http://www.amjmed.com/issues?issue_key=S0002-9343%2808%29X0007-5.
  3. Meyer, Ashley N. D., Velma L. Payne, Derek W. Meeks, Radha Rao, and Hardeep Singh. “Physicians’ Diagnostic Accuracy, Confidence, and Resource Requests.” JAMA Internal Medicine JAMA Intern Med 173.21 (2013): 1952.
  4. Schiff GD. Minimizing diagnostic error: the importance of follow-up and feedback. Am J Med. 2008;121(5)(suppl):S38-S42.

Featured image:
superhero by snapp3r

Categories
Clinical Reflection

No Time For Error

In November 1999, the Institute of Medicine released a study entitled “To Err is Human: Building a Safer Health System.” Within the first line of that study, a sobering statistic was revealed: between 44,000 and 98,000 hospital deaths each year are attributable to preventable medical errors.[1] We have been taught about the communication shortcomings that can easily occur between members of a medical team who may be stressed, sleep-deprived, rushed. Even though we have been warned about the potential dangers that can result from the use of abbreviations and imprecise communication, it took a recent misunderstanding for me to leave my Boards-bubble and comprehend, on a personal level, just how misleading certain abbreviations can be.

A few weeks ago, I sat down at my desk and began going over the first lecture of the day. This was 6:30 am:  pre-coffee, pre-sunlight, pre-hair combing. At the time, we were studying the gastrointestinal system. As I reviewed the first few slides of this lecture, I became very confused. I kept seeing the abbreviation ‘LES,’ and I really couldn’t figure out what it was referring to – you have my full permission to laugh at me right now; like I said, it was pre-coffee. As a born and raised East Coaster, LES means one thing and one thing only to me: the Lower East Side of Manhattan. If you are unfamiliar with New York City, please allow me to take a brief detour here to tell you a bit about the wonders of the Lower East Side (LES). The LES has a rich history, greatly influenced by the fact that many Eastern European immigrants settled into tenement housing in the area after coming through Ellis Island. When I think of the LES, I think about deli sandwiches that are too large  to fit through a human mandible, knishes, amazing donuts, and macaroni and cheese pancakes. I do not reflexively think about acid reflux, vomit, and esophageal cancer, although the association may make sense considering the indulgent foods just mentioned. As you might imagine, when I finally figured out that LES was intended to stand for ‘lower esophageal sphincter,’ it was a bit of a letdown. And since I couldn’t get the aforementioned amazing donuts out of my head, my whole morning was pretty much lost when I spent 45 minutes on the phone trying to coordinate a cross-country delivery of them to the West Coast.

Despite the ambiguity, and in my case, potential hilarity, of using abbreviations, one thing is clear: there is an abundance of statistics and data to back up the assertion that medical errors cost lives. Just run a Google search for ‘medical error abbreviation deaths’ or some variation thereof and you will see thousands of hits about the health hazard of medical miscommunication. It’s easy enough to find data  showing how detrimental some timesaving charting techniques can be. As newly-minted members of the medical profession, we have the responsibility to act as the new guard and to usher in safer communication and documentation practices. We can begin to advocate for better safety practices by trying to limit our use of abbreviations in our charting, and we can ask our professors to do to the same in their lectures and test questions. Though becoming a physician is a long and rigorous journey, we should never take shortcuts along the way that have the potential to put our patients at risk of harm.

Featured image:
Doctors Chart – Hospital Chart by wp paarz

References:

[1] Institute of Medicine. To Err is Human: Building a Safer Health System. November 1999. https://iom.nationalacademies.org/~/media/Files/Report%20Files/1999/To-Err-is-Human/To%20Err%20is%20Human%201999%20%20report%20brief.pdf

Categories
Clinical Public Health

Health Care Responsibilities: Zika

While attending a residency application question and answer meeting, I learned that 2016 marks the first year in over a decade that my mentor will not be taking medical students on an international health elective. She emphatically explained that it would be unethical to expose students to known Zika virus-infected areas, and irresponsible to potentially create a reservoir of Zika virus to bring back to the United States. Her second point resonated with me, because I had just examined a patient in clinic who commutes every two weeks between Puerto Rico and Orlando, Florida. He is a 30-year old male who engages in sexual activity with women only and reports inconsistent condom use. This worries me.

Puerto Rico has been hardest hit by the Zika virus pandemic, and is ground zero for Zika virus infection in the United States and territories. Between index case documentation on November 23, 2015 and January 28, 2016, there were 155 suspected Zika virus disease cases in Puerto Rico (Thomas, 2016). As of May 18, 2016, there are 544 reported travel-associated Zika virus disease cases (10 sexually transmitted; 1 Guillain-barré syndrome) in the United States and 0 locally-acquired vector borne cases (http://www.cdc.gov/zika/geo/united-states.html). The U.S. Zika virus infection in the United States and territories (USZPR) and the Zika Active Pregnancy Surveilance System (ZAPSS) registries are tracking cases of pregnant women with any laboratory evidence of possible Zika virus infection in the U.S. and territories, and reporting data every Thursday at the following website: http://www.cdc.gov/zika/geo/pregwomen-uscases.html  As of May 12, 2016, there were 157 pregnant women in the U.S. and District of Columbia with laboratory-suspected Zika virus infection.

Zika virus can spread from a pregnant woman to her fetus and is known to cause microcephaly and other brain abnormalities (ACOG Practice Advisory, March 31, 2016). The virus can also be transmitted through unprotected sex with a male partner, spurring the Centers for Disease Control and Prevention (CDC) HAN (Health Alert Network) advisory for the prevention of sexual transmission of Zika virus (Oster, 2016). Clinical criteria for Zika virus disease include the presence of (Simeone, 2016):

  • Guillain-Barre syndrome;

OR

  • in utero findings of microcephaly or intracranial calcifications in a mother with clinically compatible symptoms or epidemiologic risk factors (eg. sexual activity with a known Zika infected man) for Zika virus infection;

OR

  • one or more of the following symptoms
  1. fever;
  2. rash;
  3. arthralgia;
  4. conjunctivitis

Zika virus disease is not the first maternal virus infection to cause or be associated with congenital abnormalities, but it is the first known mosquito-borne infection to cause congenital anomalies in humans. The virus’ current behavior and long-term health consequences are still poorly understood, imparting urgency to disease control efforts. The CDC travel advisory for the country of interest by our international health elective recommends the following:

  • Women who are pregnant should not travel to areas in which there is known vector-borne disease;
  • Women who are pregnant should use condoms or not have sex (vaginal, anal, or oral) during the pregnancy with a male who has been exposed to a Zika-infected area;
  • Women and men who are trying to become pregnant should consider the risks of a Zika virus infection and strictly follow steps to prevent mosquito bites;
  • Men who traveled to or live in an area with Zika, and who have a pregnant partner, are recommended to use condoms or not have sex (vaginal, anal, or oral) during the pregnancy.

Reflecting on my clinical encounter with the Puerto Rican male who commutes regularly between known-Zika infected areas and the imminently vector-infected United States, I wonder if he is aware that he poses a risk. Does he believe, as so many often do, that he could not possibly be the one to acquire or sexually transmit an infection? Has he considered the possibility that he could serve as a viral reservoir?

In light of current evidence regarding Zika virus disease and the significant risks, I agree with my mentor’s decision to limit medical student international travel to Zika-infected areas. And I ask myself and readers, what is the responsibility of medical professionals in regards to communicable disease containment?

For more information, please see the American College of Obstetrics and Gynecology (ACOG) and CDC websites for clinical updates. An updated practice advisory by ACOG and the Society for Maternal-Fetal Medicine can be found at this link: http://www.acog.org/About-ACOG/News-Room/Practice-Advisories/Practice-Advisory-Interim-Guidance-for-Care-of-Obstetric-Patients-During-a-Zika-Virus-Outbreak

 

References

Thomas DL, Sharp TM, Torres J, et al. Local Transmission of Zika Virus — Puerto Rico, November 23, 2015–January 28, 2016. MMWR Morb Mortal Wkly Rep 2016;65place_Holder_For_Early_Release:154–158. DOI: http://dx.doi.org/10.15585/mmwr.mm6506e2

Oster AM, Brooks JT, Stryker JE, et al. Interim Guidelines for Prevention of Sexual Transmission of Zika Virus — United States, 2016. MMWR Morb Mortal Wkly Rep 2016;65place_Holder_For_Early_Release:120–121. DOI: http://dx.doi.org/10.15585/mmwr.mm6505e1

American College of Obstetrics & Gynecology. ACOG Practice Advisory: Updated Interim Guidance for Care of Women of Reproductive Age During a Zika Virus Outbreak. March 31, 2016. Available at: http://www.acog.org/About-ACOG/News-Room/Practice-Advisories/Practice-Advisory-Interim-Guidance-for-Care-of-Obstetric-Patients-During-a-Zika-Virus-Outbreak  Retrieved May 23, 2016.

Simeone RM, Shapiro-Mendoza CK, Meaney-Delman D, et al. Possible Zika Virus Infection Among Pregnant Women — United States and Territories, May 2016. MMWR Morb Mortal Wkly Rep. ePub: 20 May 2016. DOI: http://dx.doi.org/10.15585/mmwr.mm6520e1

Featured image:
Zika Mosquitoes (05810440) by IAEA Imagebank

Categories
Clinical Narrative

Did you hear any zebras in there?

“Every child you encounter is a divine appointment.” – Wess Stafford

I made a new friend today. He was sitting on the floor organizing puzzle pieces. I took a seat beside him to take in his perspective. It had been awhile since I joined a patient on this level, but it set the tone of our relationship immediately.

I made a new friend who was excited to share with me. He looked over at me and asked if I wanted to help him sort. “It’s more fun down here, isn’t it? I can teach you where these go,” he offered.

I made a new friend whose favorite things about himself are his freckles, despite what the kids at school say about them. He winked at his mom as we continued to sort the puzzle pieces. “I think your best thing is your smile. It is almost like my mom’s!” he remarked.

I made a new friend who is stronger than most adults I have met. He pointed at a puzzle piece and told me that he has “been sick since he was as tiny as this puzzle piece.”

I realized my new friend just wanted someone to include him in his case. As he recounted his story with vigor, he nodded toward his mother and critiqued, “Usually people like you only want to know what she has to say.”

My new friend showed me the scar on his head and the one across his chest. “I am proud of them,” he stated. “Mom told me I am the superstar of the family… but I think she does more than I do.” He shrugged.

I made a new friend who saw me as an ally. I was amazed at how quickly he trusted me; after all of the doctors he had met before me. “I am not afraid of you,” he said. “Mom says that you want to help me feel better, and mom is always right.”

My new friend had many questions and I did my best to explain why we were meeting. He looked at me with trusting brown eyes and asked, “So are you going to listen to my insides with your special headphones?” I nodded and he held his shirt up for me.

I made a new friend who found humor in a hard situation. “Did you hear any zebras in there?” His eyes were wide with excitement as I put my stethoscope back around my neck.

My new friend challenged me to adapt my exam routine and inspired me to work on my creativity. I let him try my “headphones” out on me. “I think you have some monkeys in you! Let’s see what mom has!” he cheered.

I made a new friend whose heartbeat was weak, but whose heart was full of kindness. As he held the bottle of gummy vitamins above his head, he exclaimed, “These are way cooler than the pills my mom tries to hide in my applesauce! I am going to make you my favorite snack sometime. I won’t put anything bad in it, don’t worry.”

When it was time to say goodbye to my new friend, he gave me a big squeeze and told me he thought we would be good friends. “Next time I will feed the zebras before we come so you can hear them better!”

Featured image:
zebra by SigNote Cloud

Categories
Clinical Disability Issues Reflection

Asperger’s & Neurodiversity

“He who is different from me does not impoverish me – he enriches me. Our unity is constituted in something higher than ourselves – in Man… For no man seeks to hear his own echo, or to find his reflection in the glass.” 

–  Antoine de Saint-Exupery (11)

We live in a world of increasing diversity and acceptance. With more efficient travel, greater connections and more robust discrimination laws, never before have so many opportunities been laid out for us to endeavor. Women can vote, same-sex couples can marry; we are on the cusp of entering a new era. Yet amongst all these historical, cultural and economical changes, what we often forget is the psychological. If we are to accept people for who they are, with respect and dignity, then why do we then choose to label them with terms such as ‘Asperger’s’ or ‘Autistic’ and to then reduce the paths they may be able to follow?

What is Neurodiversity?

‘My brain is a jewel. I am amazed with the mind that I have.’ – Muskie, diagnosed with Asperger Syndrome (2)

In the late 1990s, sociologist Judy Singer invented the term neurodiversity; a term that described conditions such as Autism and ADHD (5). This neurodiversity movement was born out of the autistic civil rights movement in the 1990s, and has grown rapidly thanks to the internet. The movement consisted mainly of members who had been diagnosed with Asperger’s, but did not wish to be ‘cured.’ This perspective, a step away from the mainstream method of  categorization, led to books (12) and articles (13) being written, the launching of groups such as the Autism Self Advocacy Network, and a novel  perspective of human thinking.

Neurodiversity is a term very similar to cultural or biological diversity; it takes into account the wide variety of human experiences, and respects people for their differences. Such an approach steps away from the medical model of viewing disability, instead focusing on the talents and perspective that each person can bring to the world. The implications of such a movement are widespread; the right to be treated with respect and dignity, regardless of the way one thinks.

What is Autism?

‘Autism is pervasive, colors every experience, every sensation, perception, thought, emotion, and encounter, every aspect of existence’ – autistic activist Jim Sinclair, 1993 (2)

Autism is found under Pervasive Developmental Disorders in the International Classification of Diseases-10. The criteria listed include impairment in social communication and social attachments (6). First used in 1910 by a Swiss Psychiatrist named Bleuler, it was transformed into its modern-day meaning in 1944 by the Austrian paediatrician Hans Asperger, when he published its first definition. The disorder has been termed Asperger’s Syndrome ever since (7).

Since its first use, the incidence of Autism has increased, leading to increased public attention both in the media and within the medical circle (1). This gradual increase has often led to the question: is this a disease of biology, or of society? Indeed, as our society has become more medicalized, Autism has entered into an era fixated with treatment and cure.

What is ‘normal’?

By continuing to medicalize a different way of looking at the world and of interacting with others, we must first define what it means to have a ‘normal’ perspective of such things.

This question brings to light the very fact that no one is normal. From the way we dress, to the jobs we undertake. From our hobbies to our distractions, our loves to our hates, our desires to our ventures, we are all different. How do we then take out our marking pen and draw a line between those who are ‘normal’ and those who are not? In fact, from an ‘autistic’ point of view, people who are non-autistic are easily distractible, obsessed with social interaction and suffer from profound deficits in attention to detail. The idea of normality changes with time, place, date and gender; what is normal here in the UK may well be considered unacceptable in Sub-Saharan Africa.

Rather than focusing on the normal, we should be focusing on individuality; on what each person can contribute to our society, and to themselves. This boundary between normality and disability is an artifact, a division drawn by man that merely reflects the values of the society in which he resides. For example, dyslexia is based upon our value to read sufficiently, something that would  not have been as significant hundreds of years ago. So what does our medicalization of Autism tell us about ourselves?

As the modern era continues to be transformed by technology, perhaps what we build in the future –with the internet in our laps and a screen at every corner – will become a haven for those who have difficulty with eye contact and with body language. The diagnosis of Autism today may well be different from the diagnosis tomorrow.

Is Autism an identity or a disease?

In the absence of any biomarkers for diagnosing psychiatric illnesses, psychiatry often utilizes behavioural deviations instead (4). Using this argument, one could suggest that psychiatry may end up ignoring advantageous behaviors that are outside the ‘norm’ (4). What we may see instead are the difficulties that entrench a person. Rather than encouraging a young child to develop their interests and their hobbies, instead we may focus purely on their intense obsessions on the minutest details. Imagine what this means for a child. Instead of being seen as a building block of opportunities for ideas and growth, these children may instead see themselves as having un-breakable boundaries.

Yet, a label can have a lot of power. A diagnosis places upon the person a special status within society. It opens the doorway to specialist interventions and support from multiple sectors, helping the individual to succeed in certain areas of life that they may find more demanding than others.

There are clearly many things that children with Asperger’s have difficulty with; areas where they require intensive support and management. It is through these interventions that children may then be able to better integrate with society and feel valued. But the idea of finding a cure seems a step too far. As science continues to delve into our lives, we gradually begin to see everything with a different lens; that there must be pathology in everything that is different, and there must be an answer – a pill, an operation, a test.

But it is not all bad. The medical model has brought with it huge shifts within science – new drugs, new insights and a new life for many, many people. By medicalizing something, by using physiology to explain a condition, you are then able to destigmatize it. Thus, a person is no longer a schizophrenic, but instead suffers from schizophrenia – a disease entity of its own.

Whether or not such a viewpoint can be used for a diagnosis such as Autism is a difficult question to answer. For some, the explanation that Autism is an ‘atypical wiring of the brain’ (2) may help them to understand the difficulties that they face. Yet others may strongly identify with such a diagnosis, claiming that it is a gift that allows them to view the world through a different lens, giving them the opportunity to appreciate the depths of the human mind. They may choose to see themselves not as pathological, as wiring gone wrong, but as privileged beings who have been granted a gift of insight that others cannot fully appreciate.

Different vs Defective

As with many things in life, Autism falls on a spectrum. One could argue that by focusing on those who are high-functioning, and therefore able to have this debate, you are minimizing the true suffering of those who do not have this privilege. Indeed it can be argued that because it is on a spectrum, one should be careful not to blanket everyone with Autism as either having a ‘disability’ or simply being ‘high-functioning.’ The aim is to view Autism with a more open mind, rather than as something that requires a gene to be unlocked. This has received appreciation by the American Psychiatric Association, who recently converted the diagnoses of ‘Autism’ and ‘Aspergers’ into one simple diagnosis of ‘Autism Spectrum Disorder.’ Through the creation of this diagnosis, the emphasis has been placed on the idea that people do not fit into boxes, but lie upon a continual line that can encompass a wide range of behaviour.

Neurodiversity is the idea that neurological differences such as Autism are due to normal variation, rather than a sign of pathology. This point of view emphasises the fact that these people do not necessarily need to be ‘cured’ but helped and accommodated. If we look at the progression of science and the humanities, we see that the breakthroughs have been developed by minds that think differently; create links where others have drawn their blinds. If we are to grow as human beings, then this is the approach that is required; not just to grow scientifically, but also morally. Unfortunately, we are currently drawn towards questions of causation and cure – the link between Autism and MMR by Wakefield being just one example (8); an attempt to find blame, and ask the question: why is my child the way he/she is?

And to people with these conditions themselves, surely the idea of being part of a natural variation is much more appealing than being seen as something that is broken and needs to be ‘fixed.’ To describe someone as defective is to take away the essence of who that person is, and what they can bring to the world, to their family, to themselves.

Instead of creating a world focused on finding cures, on ridding the world of autism, we should be building the foundations to allow people to receive the support they deserve, to have their rights heard. Such efforts include early interventions for speech and behavior therapies, and building more accommodating home and work environments.

If we are to accept the fact that equality has been applied to race, religion, gender and sexual orientation, then why can it not be applied to people with different ways of thinking and interacting as well?

We are already seeing glimmers of this in our current society. Mark Haddon’s novel, The Curious Incident of the Dog in the Night-time, written from the point of view of a young boy with Autism, helps readers to transcend their lives and view the world from eyes that see differently, a mind that whirs at a different tone. This novel  is studied by English students across the UK (9), and perhaps by encouraging these types of empathetic endeavours, rooted in the humanities rather than the sciences, a new way of thinking can be formed, where we can focus on acceptance rather than on cure.

‘An autistic child can only be helped if a serious attempt is made to see the world from his point of view.’ (10)

References

  1. Baker, D.L. 2006. Neurodiversity, neurological disability and the public sector: notes on the autism spectrum. Disability & Society. 21:15-29
  2. Ortega, F. The Cerebral Subject and the Challenge of Neurodiversity. 4:425-445
  3. Jaarsma, P., Welin, S. 2012. Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement. Health Care Analysis. 20:20-30
  4. Kapp, S.K., Fillespie-Lynch, K., Sherman, L.E., Hutman, T. Deficit, Difference, or Both? Autism and Neurodiversity. Develeopmental Psychology. 49:59-71
  5. Silberman, S. 2013. Neurodiversity reqires conventional thinking about brains [Online]. Available at: http://www.wired.com/2013/04/neurodiversity/ [Accessed: 1st January 2016]
  6. World Health Organisation. 2016. ICD-10: International statistical classification of diseases and related health problems. Geneva: World Health Organisation
  7. McGuinness, S. 2015. History of Autism [Online]. Available at: http://www.autismuk.com/home-page/history-of-autism/ [Accessed: 1st January 2016]
  8. Godlee, F., Smith, J., Marcovitch, H. 2011. Wakefield’s article linking MMR vaccine and autism was fraudulent. The British Medical Journal. 342:c7452
  9. 2013. Subject Content [Online]. Available at: http://www.aqa.org.uk/subjects/english/aqa-certificate/english-literature-8710/subject-content/why-choose [Accessed: 1st January 2016]
  10. Stanton, M. 2006. What is Neurodiversity? [Online]. Available at: https://mikestanton.wordpress.com/my-autism-pages/what-is-neurodiversity/ [Accessed: 1st January 2016]
  11. Evans, T. 2015. Counselling Skills for Becoming a Wiser Practitioner: Tools, Techniques and Reflections for Building Practice Wisdom. Jessica Kingsley Publishers.
  12. Silberman, S. 2015. NeuroTribes: The Legacy of Autism and the Future of Neurodiversity. Avery
  13. Solomon, A. 2008. The Autism Rights Movement [Online]. Available at: http://nymag.com/news/features/47225/ [Accessed: 28th January 2016]

Featured image:
Diversity by Séb

Categories
Clinical Innovation Opinion Technology

The 21st century Frankenstein Revival

Background

Human head transplantation (the head anastomosis venture project – HEAVEN) has been for a long time merely a neurosurgical and medical theoretical concept that did not enjoy much attention among the medical community. However, in recent times, there have been voices trying to revitalize this question. Italian neurosurgeon, Dr. Sergio Canavero, is one of the most prominent protagonists in this regard. The idea behind this concept is to help people who have severe physical disabilities (such as neuromuscular dystrophies or tetraplegia), but have an intact head and brain. There is a vast array of medical, ethical and physiological questions and obstacles that are ahead of this endeavor. Despite a lot of skepticism, Dr. Canavero has laid out a couple of transplantation protocols he believes can get the job done. In these protocols, he tried to answer and address every possible challenge that is expected to occur during this delicate and immensely complex procedure. The main purpose of this short article is to analyze the crucial components of his protocols and try to determine if they have any rational scientific relevance and ethical/medical justification.

Why do it?

Before you chop someone’s head off, you’d better have some good reasons, right? This is fundamental. In medicine, conditions are treated if the potential benefits of the treatment outweigh the potential risks. For each particular disease state, there has to be a justified medical indication and logical/rational foundation behind treatment. This is the sine qua non of every medical intervention. You have to bear in mind that anything you do has to lead, ultimatively, to a better quality of life. In that regard, I doubt that this procedure would accomplish that goal  at the present moment and it principally acts as an academic exercise, albeit lethal one. I generally do not support doing things just for the sake of doing them, especially in medicine where such behavior can be costly and unethical. Sure, you can become hero of the day and act in a „told you so“ manner if things go your way, but what if they don’t?

Even if you theoretically manage to overcome the technical and technological barriers that are inherent to this procedure, the question still remains: will this person experience improved quality of life? Dr. Canavero’s logic is that people who suffer from severe and/or progressive neurological conditions, e.g. muscular dystrophy or quadriplegia, could potentially benefit from this procedure. How? Well, if your peripheral nervous system does not work but you do have preserved cognitive functions (brain and brain stem), then you would be able to theoretically join healthy brain with healthy body of a deceased donor. The idea is that this body would be donated by those people who were clinically confirmed as brain-dead due to, for example, severe head trauma, but still had a fully functional body to offer. On the other hand, the „recipient“ of the body would give an informed consent that he/she is willing to undergo a body transplantation procedure, regardless of a high risk that this procedure could end in death. In  popular jargon – „people who have nothing to lose“ are the group of people that are targeted as candidates for this procedure in Dr. Canavero’s opinion.

Feasability

Dr. Canavero laid out 2 operative protocols that provide a theoretical framework for this type of experiment. One of them is called HEAVEN1 and addresses head-to-body anastomosis, while the other is named GEMINI2 and features a spine fusion protocol. The physiological obstacles that Dr. Canavero needs to overcome in order to succeed in this endeavour are tremendous, but I will try to briefly tackle the 4 major ones.

  1. Brain perfusion problems – in only a few minutes post-decapitation, it is expected that neurons will be exposed to a hypoperfusive state, ultimately resulting in brain tissue death.
  2. Fusion of two ends of the spinal tract – this has never been done before in humans.
  3. Reparation and regeneration of neuronal connections and spinal tracts/projections within the CNS and the restoration of the motor and sensory functionality.
  4. Post-transplantation complications – this includes potential tissue transplant rejection reactions that are immunologically mediated.

Should we do it?

At this point, we just do not know enough about the proposed procedures. Some of them have been performed on animal models and some were done only in a Petri dish. Results obtained through animal experiments and in-vitro molecular models might not correlate (and most commonly they don’t) with human physiology. In the early 1970s, American neurosurgeon Robert Joseph White performed the first monkey head transplantation onto a body of another monkey3. The recipient monkey lived for 8 days, and there were no surgical complications encountered. However, the monkey was quadriplegic since the surgical protocol did not address the problem of spinal fusion4. This resulted in a monkey who was completely paralyzed from the neck down, but who could still eat and follow objects with its eyes since the cranial nerves, brain stem and other brain structures were intact and perfused by the circulatory system of the donor’s body. Moreover, it was reported that the transplanted head could hear sounds and smell/taste food. However, immunologic reactions in the form of graft rejection ensued and the monkey died from them.

In this regard, Canavero’s protocol is essentially just a „compilation“ of biotech solutions for a wide spectrum of problems in medicine. Successful translation of any of these theoretical concepts into the clinical arena would be a giant leap in medicine. However, strictly lege artis, there is no strong evidence that these techniques will be successfull at all. Patients undergoing this procedure could be left in much more catastrophic and miserable conditions than those endured prior the procedure. Transplantation of a human head onto a new human body should not be perceived merely as transplanting a flower from one pot to another. We do not know how the brain would interact with the new neurochemical and biochemical milleu of the body that it just received. How would the brain integrate and process new signals arriving from the newly discovered periphery? How would the brain process perception and information coming from these new muscles and other body structures? These problems were emphasized in a recent letter written by Dr. Cartolovni and Dr. Spagnolo, published in the Surgical Neurology International journal. In this letter, the authors argue that Canavero’s perception of the human body functional framework is strictly mechanistic, and largely disregards the importance of body self-cognition, which plays a real part in the formation of human self.

Additionally, they state that head transplant procedures raise significant social and ethical problems in terms of organ donation. A leading medical ethicist, Dr. Arthur Caplan from NYU’s Langone Medical Center, states that the implications of this procedure are far-reaching and extremely dangerous from the ethical and medical standpoint. Similarly, Dr. Jerry Silver from Case Western University states that he perceives human transplants as a barbaric method at this point in time. Moreover, he said that he does not expect such procedures to be successfully performed for at least the next hundred years.

In my opinon, we are not ready for this type of procedure, at least in light of the most recent evidence-based medicine. Even if the tremendous technical difficulties could be surpassed, it still remains a question how the brain (center) would integrate with the periphery. At this point, I assume that the brain would be overwhelmed with the amount of input that it would receive from the periphery, ultimately leading the transplant recipient to derangement, pain and insanity. The prospects of this experiment are simply grim and unfavorable, with our present knowledge and, therefore, I would advocate for its halt.

References

  1. Canavero S. HEAVEN: The head anastomosis venture Project outline for the first human head transplantation with spinal linkage (GEMINI). Surg Neurol Int. 2013;4(2):S335-42.
  2. Canavero S. The „Gemini“ spinal cord fusion protocol: Reloaded. Surg Neurol Int. 2015;6:18.
  3. White RJ, Wolin LR, Massopust LC Jr, Taslitz N, Verdura J. Primate cephalic transplantation: Neurogenic separation, vascular association. Transplant Proc. 1971;3:602-4.
  4. White RJ. Hypothermia preservation and transplantation of brain. Resuscitation. 1975;4:197-210.
  5. Čartolovni A, Spagnolo AG. Ethical considerations regarding head transplantation. Surg Neurol Int. 2015;6:103.

Featured image:
Floating head, neck redone by TaylorHerring

Categories
Clinical Lifestyle Public Health

A League of Randomized Clinical Trials

Frontline recently reported on data released from Boston University and the Department of Veterans Affairs demonstrating that out of 91 former National Football League (NFL) players, 87 had Chronic Traumatic Encephalopathy (CTE).  This degenerative brain disease is believed to be the result of repetitive head trauma, and can lead to memory and mood disorders. [1] It is unclear why the disease develops in some players but not others.

The findings of the above study come with several limitations.  In particular, the gold standard for CTE diagnosis is examination of brain tissue postmortem.  The data comes from players who were concerned during their lifetimes that they showed symptoms of the degenerative disease and arranged, upon death, to donate their bodies and brains for analysis.  As a result, the prevalence of CTE suggested by the data may be skewed due to selection bias.  The brains examined post-mortem came from athletes already concerned about CTE because of their clinical symptoms, making it much more likely that the investigators would find evidence of the disease.  The ongoing work at Boston University and the Department of Veterans Affairs is a retrospective analysis that cannot determine the cause of CTE.  It is important, however, for the identification of factors that are correlated with the disease, which may spark more interest and lead to more focused research on the topic.  Even so, the disease was present in 96% of those who were tested.  This finding is both remarkable and eye-opening.  It demonstrates a real concern for athletes in contact sports like football.

Organized football poses a risk of concussions.  Chris Borland was a college linebacker and All-American drafted into the NFL in the third round in 2014. Although he only had two diagnosed concussions, one during eighth-grade soccer, and the other playing high-school football, he estimates that the actual number is closer to thirty. On March 13, 2015, Borland retired from the league via email. [2] He has since described the move as preventive and outlined his determination to prevent the degeneration of his own brain.  The NFL is aware of the risk posed by concussion and has focused on decreasing the rate of this injury.  In their 2015 Health & Safety Report, the NFL published a thirty-five percent decrease in regular-season concussions from 2012. [3] According to the data shared with Frontline, however, forty percent of those determined to have CTE were offensive and defensive linemen, players who have repetitive, sub-concussive hits on nearly every play. [1] This suggests that recurrent, lower-intensity blows may also lead to CTE.

Chronic traumatic encephalopathy is not unique to football players. It can be seen in other athletes, military veterans, epileptics, abuse victims, and circus performers who are shot out of cannons. [4] The scientific and medical communities should not delve into the controversy of any alleged cover-ups as discussed in the Frontline documentary A League of Denial. [5] Rather, our focus should be on furthering research, because our understanding of this condition is still in its infancy.

Rates of CTE in the general population or even in the professional football community have not yet been established.  The gold standard of scientific experimentation, the double-blinded, randomized controlled trial is not an ethical or practical possibility in this case.  Players without symptoms of CTE must be analyzed to allow for characterization of healthy persons as well as sub-clinical disease.  This may help identify why some people are afflicted with the condition and not others.  Those who suspect they may have CTE should be granted medical care and follow-up to help the scientific community better understand the degenerative progression of the disease.  Research should not be limited to professional athletes, as college and even younger athletes may be at risk of developing CTE.  It also should not be limited to football, as head trauma occurs in many sports.  It is important for professional organizations and sports fans to support research and efforts to implement relevant safety measures to preserve the health of their favorite athletes and to enhance the quality of the sports they enjoy.

References:

  1. Breslow, J. (2015, September 18). New: 87 Deceased NFL Players Test Positive for Brain Disease. Retrieved September 20, 2015.
  2. Fainaru, S., & Fainaru-Wada, M. (2015, August 21). Why former 49er Chris Borland is the most dangerous man in football. Retrieved September 20, 2015.
  3. 2015 NFL Health and Safety Report. (2015). Retrieved September 20, 2015, from http://static.nfl.com/static/content/public/photo/2015/08/05/0ap3000000506671.pdf
  4. Hanna, J., Goldschmidt, D., & Flower, K. (2015, October 11). 87 of 91 tested ex-NFL players had brain disease linked to head trauma. Retrieved October 12, 2015.
  5. Frontline. (2013). League of denial: The NFL’s concussion crisis [Motion picture]. United States: PBS

Featured image:
Football 10.18.08 by Mike Hoff

Categories
Clinical Emotion Lifestyle Narrative

A letter from a patient with anorexia nervosa

Dear Doctor,

What I need from you is validation that what I am experiencing is real; recognize this is more than just a burden for me.

At first it was a rush. The best feeling I’d ever had. I was getting compliments, attention, and my jeans felt wonderfully loose.  But it didn’t take long until it became everything; an obsession.  My eating disorder (ED) has become all I think about.  Every second of every day is consumed with what I eat, what I avoid, how I can avoid it, when I will exercise and for how long. I can’t escape.  Even if I actually wanted to gain weight back, it’s not that easy.

I know you might understand, but at least acknowledge that it’s not about the food. The truth is, when you say it’s about the food, it’s more tangible, easier to categorize, like a patient with a broken wrist.  People think that if I “just eat a sandwich” I will be fine, but this is far from accurate.

Sometimes ED hints at me, other times it screams. Either way, ED is a part of my life; it is a part of who I am right now. I have a deep connection to this diagnosis. Because of this, I will defend and validate ED, and conjure any excuse to hold on to this relationship just a little longer. For patients like me, ED becomes another member of the family, the third wheel in a relationship, or even another personality who needs attention.

I still struggle often, but I have good days too.  I am not just another girl with anorexia.  I’m a young woman who never takes life too seriously, loves road trips and playing the piano, and who fights back against anorexia every single day.  I know it’s your mission, but you cannot fix me. Only I can do that and I am going to need your support.

So right now, take a seat on my rollercoaster, listen to me, and let’s get to the end of this ride.

Sincerely,

Your ED patient

 

* Inspired by a loved one

Featured image:
Anorexia. by Mary Lock