Mass Media Representation of Healthcare Environments: An Academic Analysis of "Patch Adams" and "Awakenings"
This is an academic paper I wrote in the Summer of 2015 for a Sociology of Health and Illness class. I recently came across it and I saw some good points. I would like to revisit it, sometime in the future and continue my research.
University of Pittsburgh
Sociology of Health and Illness
Summer 2015 Term Paper
RUNNING HEADER: MASS MEDIA REPRESENTATION OF HEALTHCARE ENVIRONMENTS 1
In today's world, mass media has a very powerful effect on humans. Too many people start to believe everything they hear whether there is any truth in the portrayal or not. Also, many forms of mass media are "twisted" to help further prove a point, whether the facts are accurate or not. Over the years, Hollywood has given us some very precise depictions of the workers in the health care setting and some not so accurate. Two such films provide some example of both representation and misrepresentation of employees and relationships in the health care system.
Patch Adams is the light-hearted film featuring Robin Williams as Hunter "Patch" Adams. A patient at a mental institution after attempting to commit suicide, Patch applies to medical school where his strong interpersonal communication skills and genuine care for the patients threaten to be corrupted by the iron-fisted influence of the dean of the medical school. While his methods for cheering up the patients are considered illegal, they did not mind as they were in an overall better mood and needed to take less pain medication.
Based on Oliver Sacks' memoir, Awakenings is another movie featuring Robin Williams, but this time, the environment is much more severe. When an outbreak of encephalitis lethargica sweeps across the United States from 1917-1928, many people quickly died. For those that survived, they were left profoundly disabled by the infection. The disease left them in a catatonic state, and for many years, doctors and scientists were unsure of how to retrain the brain to communicate with its environment. In 1969, Dr. Malcolm Sayer administered a new type of drug known as L-Dopa, which allowed these patients to come out of their catatonic states. The end of the film shows how many of these patients are then forced to live with new lives, after decades of lives vanished before their eyes.
On Patch Adams' first day of medical school, the Dean gives the following speech: "Doctors are powerful. Do no harm, because you can do harm. A patient will come to you at his moment of greatest dread, hand you a knife, and say ‘Doctor, cut me open.' Why? Because he trusts you." (Patch Adams, 1998) This quote reflects the medical dominance enjoyed by many physicians. When the movie was filmed in the last 1990s, governmental control of health care was much less than it is today. Despite the change in the authorities of health care, many patients still trust doctors all the same. Doctors tend to thrive on that confidence; as seen in both films, the attending physicians act like they are superior to everyone else. Mainly the power gets to their heads. While this is not the case for every medical practitioner, many physicians possess the qualities and personalities that would make this an accurate generalization.
Another important aspect of working in a health care environment is the importance of emotional detachment. At the start of their medical education, most are aspiring physicians because they want to make a difference in someone's life. However, by the end of residency, many doctors have lost touch with their interpersonal communication skills. This is because "medical culture values and rewards ‘strength' and equates emotional involvement with weakness." (Weitz, 2013) The emotional detachment shown in both Patch Adams and Awakenings was overly dramatic. In Patch Adams, it would never be permitted for a physician to interact with patients in such a laid back manner. He also spent a lot of time creating elaborate plans to entertain the patients. Adams always asked the patient's name and how they were doing; a violation of the unwritten medical codes and values. Likewise, Dr. Sayer became so emotionally attached to the patients he was trying to treat, that he essentially could not function as an ordinary person. He was consumed with an attempt to cure these patients to return them to a normal life. When a patient experienced something good, it was a win for him, and when they suffered defeat, it was a loss for him. Dr. Sayer became one with his patients, and it ultimately caused him to lose his objectivity.
Ethnicity, race, gender, age, and class all influence the medical field. For physicians, in particular, male non-Hispanic whites from middle and upper classes are most likely to graduate with their medical degree. (Weitz, 2013) Any deviation from this "ideal student" would make obtaining a degree much more challenging. In Patch's medical school class, there were eight girls out of 160. Therefore, those women had to perform to a much higher level to be considered just as good as one of the men. Being a non-traditional, 30-some-year-old student, Patch also faced significant adversity on his road to obtaining a medical degree. In medicine, if you do not fit a particular group of criteria, you are considered much less likely to succeed. Although this is quite unfair, it is the harsh reality.
As time wears on, the doctor-patient relationship is rapidly changing. Rather than the physician making all of the decisions (except in situations in which the patient may be incapacitated), doctors and patients are now working as a team to develop the best treatment plans. "Today's patient role is more often chronic versus acute; is based on the risk of disease rather than existing illness; and requires more active engagement by the patient in monitoring, self-educating, and self-treating over time rather than just seeking treatment from a provider on a one-time basis." (Weitz, 2013) As illnesses shift from primarily acute illnesses to more chronic problems, this is becoming more and more evident. Because his patients are incapacitated by encephalitis lethargica, Dr. Sayer is forced to make the decisions regarding treatment, whereas a person with chronic lung disease may help to develop a treatment plan with their physician.
The media likes to dramatize medical situations for entertainment purposes, but in the process, many medical aspects are misrepresented. When the media is attempting to make a point to support their argument or agenda, the reality may also be misconstrued. On the other hand, Hollywood has given us some excellent and accurate portrayals of the health care setting. While overdramatizing and misrepresenting the medical environment is not ideal, it is not unusual to see.
Marshall, P. (Director), Parkes, W. F., & Lasker, L. (Producers), & Zaillian, S. (Screenwriter). (1990). Awakenings [Motion picture on DVD]. United States of America: Columbia Pictures.
Shadyac, T. P. (Director), Mylander, M. (Writer), & Oedekerk, S. (Screenwriter). (1998). Patch Adams [Motion picture on DVD]. United States of America: Universal Pictures.
Weitz, Rose. The Sociology of Health, Illness and Health Care. 6th ed. Boston: Cengage Learning, 2013. N. pag. Print.
"If you every find yourself in the middle of the dark and you can't see, I'll be the light to guide you."
Update on this morning's neuroimmunology appointment at University Hospital Main Medical Center. It went very well. 25th neurologist is the charm I suppose! The doctor and resident both were fantastic, listened carefully, asked great questions, and spent a good deal of time with us. He also concurred that I have an rare undetermined variant, likely related to the SPS. We know that "Otto" is neurological and autoimmune in nature.
He said he's never seen a pediatric onset case of SPS, nor a case a crazy as mine. Go figure. He was looking at the antibody levels in complete disbelief. I think he was expecting like a false positive, or any ever so slight elevation. He said it isn't a classic case, focal stiff limb, jerking limb, and my CT scan is not consistent with PERM, as I've only had encephalopathy once due to a physician error. That about covers the known variants of SPS.
My Key Points in my Case
-No half decent fit into a variant
-GAD65 and 14 other paraneoplastic antibodies (without detectable cancer) in the blood AND CSF
-No response to oral medications/benzos, but respond to IV diazepam
-No other conditions to explain the GAD and the other antibodies other than SPS or a form of cancer
Pretty humbling hearing that from someone who has treated several patients across the spectrum. I hope someone writes a case report on me to help other undiagnosed patients and the physicians treating them.
Regardless, the treatment is the same. I'm still digesting it and my parents and I have a lot of things to consider in coming weeks.
First line treatment is muscle relaxers and high dose benzos (which I failed), high dose steroids (also failed), PT (not possible with my feet contracted at the moment), IVIG (second line treatment) which worked for a while and then stopped, plasmapheresis (also a second line treatment), rituxmab (an immunosuppressant that destroyed the "factories" where the bad antibodies are made, would be third line, chemo agent would be fourth line wipe out my immune system.
The UH Cleveland neurologist I saw today and the NJ neurologist from a few weeks ago each agreed to work with a Pittsburgh neurologist to actually do the treatments, in a large part because of insurance constraints. I have two amazing neurologists and I really hope that the local neuro is willing to work with them!
Here's the limbo part. I need bilateral Vortex ports to do plasmapheresis. However, after my scary reaction to the trauma to my body was plain dangerous and I couldn't get someone to help for 14-16 hours. But, plasmapheresis works arguably 6 times faster than IV with no side effects.
Because IVIG wore off, some my neurologists are not overwhelmingly positive to work again, or so they say.
They both have their pros and cons. I'm personally not a fan of having to wait at least an additional 6 months in the wheelchair. I'm tired of all of this and I just want to move on with my life and flat feet.
I know what I want, but if my parents aren't on board, I can't go against my parents especially because they are insuring me. Therefore, I'm torn, frustrated, and wondering why UPMC neurologists are incapable of staying in communication with their patients. I do not trust this UPMC neurologist as much as I really need to, but what are my options? I need treatment, in state, in network to get it covered.
That's enough from me for now. I wish I knew what I am up against, but I haven't found any other "unicorns" like me in case studies. According to the doctors, they don't exist.
I really do feel like I'm on an island by myself. No case reports similar to me, doctors guessing, and the lack of agreement regarding treatment for me within the family. I feel like I should get to make the decision after the doctors present the options to me, but I'm not. I guess no one will understand me and my logic, expect for someone like me.
For years, I fought my parents on the prospect of getting a service dog. I just plain didn't want on. In October 2016, I went to SCI Forest (a prison near Clarion), to speak with inmates on the challenges that individuals with disabilities face. What I didn't expect was that one of the dogs in the training program would completely steal my heart. ❤️ We connected immediately in a way I've never connected with a dog. I just can't explain it. He was so responsive to me, loving, and a hard worker, the ironic thing being that he is not crazy about women for some reason.
During the time in the prison program, I had extremely limited time to work with Finn, as the 2 hour drive to the jail and the clearances take time. Because cameras aren't allowed in prisons, I couldn't get any pictures of Finn for months.
On April 5th, 2017, my 22 month German Shepherd, Finn, graduated from the initial training and he can already do so much. He was trained by the inmate trainers on everything from basic obedience, mobility assistance tasks like retrieving dropped objects, walking along side my wheelchair, and helping to stabilize me if I fall. Eventually, he will be able to alert me to fire alarms and my alarm clock. I'm so excited to continue working with him.
I would like to thank the inmates in the PAWS Program, as well as my cousin, for training Finn. As an Administration of Justice minor, I have never truly believed in inmate rehabilitation, but after my experiences with the inmates I've worked with, rehabilitation is possible with the right help and support. Well, those inmates have been incredible! I found out while I was in the hospital that the inmates all pitched in some money to buy this awesome camo service dog harness. When I saw it, I told my mom that I one just like that. What I didn't know is that all the guys chipped in to buy the harness FOR me! I am so touched by the gesture and it restores my faith in humanity!
We have a broken criminal justice system in our country and many insufficient and ineffective programs, but more programs like this one could help to change the lives and perspective some of our nation's 2.2 million inmates and change the lives of the people they help by training service dogs.
For the first time tonight, I worked and played with Finn outside the confines of steel double doors and I'm excited to see where this journey will take us!
April 5th, 2017, I went in for a surgery, which was to be an outpatient, very successful and smooth surgery technically. When I woke up, I was hit with horrible pains from my Complex Regional Pain Syndrome (CRPS) and spasms from my super rare disorder, Stiff Person Syndrome (SPS). I can't say I didn't see that coming though. However, my medical team will ill-prepared to deal with my complex needs.
The best part was that my head, which was the area they cut open and drilled into, didn't even hurt. Oh the irony! Afterwards, I got X-rays taken to confirm everything went well and all was good. They got me up to my inpatient room and I was ok for a few hours. Not pain free, but it was manageable. At about 7:30 that night, the wall of CRPS pain and SPS spasms hit me like a Mack truck. I sobbed and sobbed as I shook and spasmed all night. They did give me oxycodone which I turned down because it doesn't work for CRPS nerve pain. The nurse and charge nurse were baffled and felt so horrible as I shook and spasmed for hours, sweating so badly the bed was soaked, struggling to breathe due to pain and diaphragmatic spasms, as my heart rate soared to 170s and my blood pressure dropped. This continued for about 14 hours, because the doctors didn't know how to deal with my rare conditions. Eventually, one of my old doctors was permitted to step in and help me out. He prescribed the medications I needed, at the dosages I needed them at, and got my custom compounded medicines approved. I quickly started to stabilize. However, in the process, he put his job on the line to help me, to give me a standard treatment, because saving me was more important than what the hospital administration thought.
You see, the hospital administration doesn't let him treat chronic pain patients at all, because one of this most successfully used treatments wasn't profitable enough for the hospital. Therefore, over 700 patients with rare and chronic illnesses were left to fend for themselves. Over 700 kids and young adults don't have access to life saving treatment because it doesn't make enough money? I get that money is important, but what is the purpose of a hospital if they can't help their patients?
I ended up having to stay a total of 6 days after my "outpatient surgery", but it would have been much worse if the doctor hadn't gambled his job and helped me. Simply by being my doctor, he could have lost his job. But, of all those doctors in that giant world-renown children's hospital, only he could and would help me out. Why must doctors that are only trying to act in the best interests of their patients have to risk not having a job, because they were the one individual that could help the patient or save their life?
While this is my experience (and one I've had many times before at a variety of hospitals), this is not an isolated problem to my local hospital. Brilliant and well-respected doctors trying to help their patients have their jobs threatened each time, they agree to help rare disease patients. This is NOT ok and more awareness needs to be bought to the issue! Alone, we are rare, but together, we are many!
April 11th, 2017
We arrived here in Cleveland shortly after midnight, checked into the hotel, collected our stuff and walked/rolled as fast as we could up to our rooms and beds. We are all exhausted after the drive. It's an easy 2.5 hour drive from Pittsburgh, but after all a long busy day, the drive seems even longer.
We are staying at this spectacular Hyatt abou 6.8 miles from Case Western's Main Hospital and while it was the cheapest hotel option, I'm not sure I've ever been in such a grand hotel. It's indescribable actually and it is close to the hospital where my pain management doctor practices at UH Ahuja. I definitely wouldn't mind staying here again!
Anyway, short update. We've arrived and the appointment is bright and early at 8AM. Stay tuned for the updates from my 25th neurologist in 5 years! Prayers and positive thoughts would be appreciated!
I have lived with a small, plastic, triangular implant called a port for over a year now. Ports are a kind of central line that are surgically embedded under the skin and are accessed with a special needle (called a huber needle), which is a non-coring needle, meaning it doesn't take silicon out of the port when accessed. There is a small catheter called a lumen that is stitched into my vein and that is how a receive my infusions, medications, and get blood drawn while in the hospital.
The decision to get a port was not made lightly. There are many risks such as an increased chance of blood clots and deadly infections. I actually didn't make the decision to get a port, rather my parents and doctor made the decision and I found out at 3:45 in the morning when the general surgeons were rounding (like who rounds that early?! Jeez!). I signed the consent form and I was in surgery about 3 hours later. While the surgery happened quickly, the decision was pondered for months, if not years prior to the surgery.
If this was such a carefully made decision, then why do I always feel like I'm being interrogated when a doctor or nurse asks, "So why do you have a port?". In my case, years of infusions, pokes, and missed attempts have caused my veins to get severely scarred. I also receive infusions of medications that are very potent and painful to receive via a regular peripheral IV. In the next month and a half or so, I will be starting regular plasmapheresis treatments, which is also hard on the veins.
The majority of patients with ports have them for the reason I do: for infusions, for medications that cannot be put through a peripheral IV, because of poor venous access, and/or to save their veins from treatments that would be exceptionally hard on them.
A really common misconception is that ports are only for cancer patients undergoing chemotherapy. That is completely false. While some cancer patients may have ports, individuals with ports that need access for home infusions can get their treatments in the comfort of their home and they are spared the many IV attempts. For those of us with frequent IVs, lab draws, and other treatment, having a port is a game changer.
Yes, I have a port. Yes, I really need it. Yes, it makes my life 150% easier and no, you do not need to interrogate me and judge me based on whether or not you think I "need" it.
I am currently preparing for my cochlear explantation/implantation surgery on April 5th, 2017. As a result, I have been reflecting on my past experiences with my last 2 cochlear implantations to help me prepare for this one. I last underwent implantation in August 2010, so it has been awhile, and I like to think I am much older and wiser now. My dad tells me I'm a "veteran" at this now. However, some of the fears I had then are still relevant now.
In 2010, I was particularly worried about the placement of the IV because I did not like needles at the time. I'm still not a fan of them, but I won't be crying about it this time around. I wasn't particularly concerned about "going to sleep" AKA anesthesia for my first 2 surgeries and I'm really not concerned about it now, especially because my favorite, most trusted anesthesiologist will be doing the anesthesia. A huge relief for me!
As far as complications from the surgery, I have an incredibly skilled and compassionate surgeon who has done over a thousand implantations in his career and he did my first two surgeries. Technically, you couldn't ask for a better surgeon.
Ironically, I was not all that concerned with post-op pain seven years ago, but I am now. I've gotten so medically complex since and sometimes my body just decides to do whatever the heck it wants to, which can cause some (unexpected) problems. Fortunately, I trust my anesthesiologist and surgeon with my life, so I know they'll do whatever they can to keep me as safe as possible. I am concerned about my CRPS flaring after the surgery, rightfully so, as I haven't made it through a surgery since my CRPS diagnosis without needing additional treatment. Hopefully, this time will be the first!
I also have a list of all the things to remember, bring, do, etc.
I watched a video on SoulPancake the other day. It was about a father who wanted to teach his daughter how to defend herself, so he enrolled her in jiu jitsu, as he was a paraplegic and couldn't teach her himself. Or so he thought. Soon after, the instructor and his daughter encouraged him to try it. He fell in love with it and the rest is history. Much like this guy, martial arts came into my life when I was struggling with some bullying in 5th grade. When that bullying went away, other sports took over and a couple years later, chronic illness and other life circumstances led me back to it. I hear the excuse: "I'm too old", "I'm overweight", I have bad *insert body part here*", so often in reference to martial arts, but the common denominator amongst all those people and all excuses is they haven't tried it/they're afraid to try it.
Some times you have to take a leap of faith even if you have no idea where you are going to land and it starts with the decision to try! I would rather try and fail instead of not trying and being left to wonder whether or not I could have done it.
I suppose you could say this is the same mentality that I have with my upcoming 2nd Degree Black Belt test on April 20th. I have surgery on April 5th and I'm not allowed to do any physical activity for a while, which means I don't get to practice in the days leading up to the testing. However, I would rather try to test and no change (not pass), instead of being left to ponder what would have happened if I had tried. In theory, I have nothing to lose and everything to gain.
The first step is always the hardest one, but it gets easier over time with more practice! It starts with one three letter word: TRY!
Whenever someone asks me about my chronic illnesses, they are often shocked, angry, and/or concerned. Despite being deaf since birth, I was never a sickly child. In fact, I went to the pediatrician the bare minimum number of times, mostly just for my childhood vaccinations. I never had a reason to be there otherwise.
In 2012, I started developing a variety of different pain syndromes, autoimmune diseases, and neurological conditions in the weeks and months following my very first dose of the Gardasil HPV vaccine. For many years, we just assumed that my body just spontaneously decided to develop all this issues and that there wasn't an underlying cause that should be investigated.
After a near-fatal fight with encephalopathy and dysautonomia in May 2016, my doctors and I were forced to find out the underlying cause, as my life depended on it. What we discovered next caught everyone off guard. My immune system was cranking out ridiculous levels of antibodies higher than many physicians had ever seen. However, this isn't about the illnesses specifically. It is about peoples' reactions.
After finding out that the HPV vaccine was the trigger for all of my conditions, so many people told me "It didn't happen to me, my daughter, my son, etc., so it can't happen at all." In my case, and I am only qualified to speak on my experience, it can happen and it did happen.
So many people have the "It can't happen to me or my family" or the "It didn't happen to me or my family, so it can't happen" attitude. This mentality doesn't just apply to medical conditions. It can apply to most life circumstances. If you ask me, this is the single most dangerous mindset that many people have. Just because I developed a condition, doesn't mean you can't develop the same condition or an even worse condition. Instead of denying and attacking others' personal experiences, please remember to keep an open mind. You may not me affected now, but you or a loved one could be affected in the future. Additionally, it is not always easy to share ones experiences when they know they could be judged.
So simply because something hasn't happened to you, your family, your friends, etc., doesn't mean it can't/hasn't happened to someone else. That "It can't happen to me" mentality is what often gets people in trouble and closes the door on the possibility to gain more knowledge and awareness. If you asked me where I would be in five years in 2011, before I got sick, I never would have guessed I'd by a full time wheelchair user. Actually, I probably would have scoffed, like "Yeah right!". We are all guilty of that mentality, but we can take steps to reduce it. It all starts with an open mind!
Someone asked me today why I haven't signed up for the vaccine injury compensation program. This is a program in the United States started to compensate the victims of vaccine injury, because the United States is the only country in the world in which you cannot sue the vaccine maker.
This was my response: "Money can't give me back my teenage years, allow me to attend school regularly my junior and senior years, allow me to go to my proms, give me the chance to have kids when I'm older without the increased threat of passing one of my conditions on, or take away all the near death experiences and trauma with that. Money can't fix the friendships I've lost because of my illness or all the uncaring, negligent medical professionals I've encounter. It can't fix all the tests I've failed due to illness, brain fog, or hospitalization and it can't fix all the times I've been told I was faking it or that it was all in my head. Everything that has been taken away or has happened, all the money in the world just simply can't fix, buy, or replace."
I'm lucky that I have good insurance from my dad's employer and good Medicaid that covers what the primary insurance doesn't. Right now, I don't have any outstanding medical expenses. My education is being paid for and my family and I live comfortably. There are some smaller things that would make my life easier, but money will never cover, fix, or restore the big, indelible things; the things that matter the most. In some situations, all the money in the world doesn't help and this is one of those situations.