A Week in the Life of a Patient
Steven Bishop, MSIV
I met RJ in passing one day while on rounds with my team. I happened to be passing by the open door of the Physical Rehabilitation room when RJ greeted me warmly with a smile and a "good morning." I had recently decided to take part in a humanism-related project for the Gold Humanism Honor Society's Solidarity Week and immediately knew he would be an excellent choice to focus my project on. RJ, at only 55 years old, had a stroke a few weeks before, leaving him with weakness along his entire left side and difficulty speaking. My story began on Monday, February 13th, the beginning of my week in the life of a patient.
Monday, February 13th – Day 1: Stepping into His Shoes
RJ wakes up around 7:30 am and has a quiet breakfast in his room, gazing down from his dusty window on the 8th floor of the tall, cramped building at Brooklyn Hospital. He then showers and makes his way to Occupational Therapy all the while greeting every nurse, custodian, patient, and doctor as he slowly shuffles by with the help of his cane.
In the hour and a half session I observe him working to regain the lost strength in his hands, as he completes basic household activities. He practices these once effortless tasks with a smile and encourages his fellow patients, lightening the mood of the entire room.
He then moves on to Physical Therapy for another hour and a half of hard work. I watch as he pushes himself beyond his current capabilities, several times losing his balance or becoming so short of breath that he was not able to speak for a minute or two. Watching him struggle to complete these simple exercises, I can't help but wonder about the emotional torture he grapples with as a result of the accident. Every now and then, I catch a glimpse, a brief moment, of the pain he masks behind that infectious smile.
Finally, it was lunchtime and I can feel the sense of relief that was evident on his face. I went back to his room after lunch and found him sitting, again gazing out of the window. I sit in the empty chair next to him. He tells me that he has been having trouble urinating and transport will be coming soon to take him for an ultrasound of his bladder.
"But it is nothing to worry," he tells me. "Men around my age tend to have this problem."
I can sense some fear in his voice and worry on his face even as he comforts ME. Patient transport arrives and I accompany him as he is whisked away on his bed down to the imaging center.
The place is packed with patients on their beds, all waiting to have their various imaging studies done, too. Immediately, RJ recognizes an old friend and her mother who is now a patient in the hospital and coincidentally on the same floor as RJ. I stand by and overhear some to their conversation, yet I can't help but feel sad for some of the other patients here. At least RJ has a friend to pass the time with, but some of them, rather, most of them don't have anyone. The anguish and defeated looks on some of the faces makes me wish for this scan to be done with already.
An hour passes and I start feeling impatient and frustrated as we are waiting here for the ultrasound study that takes only 10 minutes. By this time, RJ finished drinking all the fluid he was given to fill his bladder, as he was instructed, so that they can get the best pre-void pictures. His bladder must be so full and he has to be incredibly uncomfortable. Not once in that hour, however, do I hear or see RJ complain. He just continues socializing and having a great time reminiscing with his friends and fellow patients.
Finally they are ready for him, and we walk over to the dark ultrasound room together. I can only imagine how difficult it must be, fighting the urge to go to the bathroom with every step. Maybe this takes his mind off of thinking how his mother had passed away from kidney problems.
He politely requests that the technician be quick; he really needs to use the bathroom at this point. The technician seems to be finished, then she says, "Hold on, I need to take just two more pictures."
A few minutes later, she finishes and points to the bathroom all the way down the hall. I watch him slowly walk down that corridor. I hope he doesn't have to go through any embarrassment from soiling himself, and luckily, he gets there in time. He shuffles back and the remaining post-void pictures are taken. Finally, we can head back up to the room. I feel relieved and emotionally drained. This is day one of the project and I feel as if I am already running out of steam. We wait another 20 minutes until transport arrives and we finally return the 8th floor.
Speech therapy arrives shortly after we reach back to the room. Who knew that "P's" could be so hard to pronounce? And I can't even talk about "N's." I stand somewhat dumbfounded and a bit foolish as the gravity of RJ's condition becomes more apparent to me. I have been speaking to him since 8:00 in the morning and I didn't even notice his difficulty in pronunciation. Repeating phrase after phrase, he gets so out of breath, he pauses briefly to catch it. True to his character, RJ keeps the mood lighthearted and continuously jokes with the speech therapist. I wonder how he feels about having to learn to speak again. He tells me how he used to perform on Broadway and sing opera in so many shows and choirs around the world! I am amazed and inspired by the grace with which he is able to cope with all of this.
If this is what a regular day is like, it is going to be a very long week.
Tuesday, February 14th – Day 2: Valentine's Day
I came in around 8:00 am to check-in on how RJ's night was. Immediately, he reminds me that today is Valentine's Day and asks me what my plans are for the holiday. As I describe my plans, he hands me a Hershey's Chocolate Bar and then shouts out at one of the custodians in the hallway so he can also give him some chocolate.
It is off to Occupational Therapy again, and after that, Physical Therapy. On our way over, RJ recognizes another patient on the floor, a woman sitting quietly in a wheelchair.
"You are my valentine for today, Miss Lilly," RJ tells her.
She beamed with a smile from ear to ear.
RJ completes OT and is nearing the end of another grueling PT session. The resident comes in and says that they now need to do a CT scan to look at his pelvis because the ultrasound from yesterday was inconclusive. My heart sinks. Sweating and out of breath after three hours of hard work, RJ must now be NPO until after the scan; no food, no water until… who knows? Seemingly unfazed, RJ heads back to his room with a smile on his face and his head held high, proud of what he has already accomplished today.
He then tells me to go grab a bite to eat before transport comes to take him back downstairs for the CT scan. I go to the cafeteria and find that my usual afternoon lunch tastes a bit off today. I quickly eat and head back up to his room, guilty to have satiated my hunger.
Patient transport arrives and we venture off to the imaging center… in the basement… again. We wait here for about an hour, before his bed is pushed in to the CT room. RJ is instructed by the technician to remain completely still.
"The scan will take only 25 minutes," he is told.
Yes, a mere 25 minutes, trying not to think about how full his bladder is. We have been here before.
I observe him from behind the protective glass. He lays there alone, staring at the ceiling; just him, his thoughts, and the contrast fluid filtering through his kidneys. What is going through his head? Is he scared about what the exam might reveal? Is he thinking back on his past life, when he wasn't a patient? Is he rationalizing the events that have led to him laying on this table? Maybe, he is thinking about mortality, or wondering how he will ever get back to living a "normal" life, when rolling over onto his stomach wasn't a task that required practice.
The CT scan is completed and we go back upstairs to RJ's room. He won't get to hang out with the witty, funny, and encouraging Karen, his speech therapist, because we waited too long for the CT scan and missed the session. I am not sure how RJ feels at this moment, but I am definitely disappointed. Is this how I am going to make my patients feel when I am running late and need to reschedule? I am beginning to see that being a doctor is going to be tricky in ways I never considered.
Wednesday, February 15th – Day 3: The Team Meeting
It's 8 am and I peep my head into RJ's room.
But I see he is talking on the phone. After, he tells me that his niece needed emergency surgery two days ago. She was supposed to be the person he would stay with after his discharge from the hospital. I begin to think about how this will be addressed at the Team Meeting that afternoon.
This is only my third day with RJ and already I start to see some semblance of quiet confidence building within as he breezes through OT and PT. It is 2:00 pm before I knew it and the nurse comes into RJ's room to escort him to the meeting. His assembled team consists of his Physiotherapist, Occupational Therapist, Speech Therapist, Doctor, Nurse, Social Worker and Financial Representative. The doctor addresses each team member and asks them how RJ has been progressing. Not surprisingly, everyone has only the most positive things to say about his progress and his impressive attitude throughout his hospital stay. The doctor moves on to addressing the social worker and asks about RJ's discharge plans. I feel the air become tense around me and I am suddenly aware of RJ sitting at one end of the table, alone in the crowd.
RJ is told that he must go home by Friday, as his insurance will not pay for any hospital expenses after that. He calmly explains that he does not feel comfortable going back to his home alone at this time. There are two flights of stairs to hike up and a 30 inch high bathtub that, despite all of his progress, he knows he will not be able to climb into. In a reasonable manner, RJ further explains that the original plan to stay at his niece's house has suddenly fallen through because of an emergency and that their family needs a few more days before RJ can join them at their home.
The team held firm to their decision that RJ must leave this Friday. Did they take a second to hear him? It seemed as if all the brightness and optimism that defined RJ had disappeared.
He spoke out, "I give everything I have in my therapy sessions because I know there are people here to help me. If I fall, someone can catch me. I have made a lot of progress, I know. But I still have to put on my pants by gripping the end between my toes, just to be able to slide it up my legs. You guys don't see what happens after I go to my room, because when I am out with you, I smile and try my best to be happy. Now it feels like I am being punished for trying my best and doing everything you've asked of me."
Well, they definitely heard that. At that moment, the team began to bounce around ideas of how to figure out this situation. The idea of transferring RJ to a long-term rehabilitation facility somewhere outside of the city comes to the front. I just sit there, stunned. How abandoned RJ must feel. How much more weight can this man bear before he cracks? How is it that a patient (a compliant one at that) and their medical team can be at odds with each other? Don't we all want the same thing?
The meeting ends and we head back to his room. RJ is visibly upset but feels slight relief as no final decision was made on his discharge plan. The small victory is short-lived, however, as the team will reconvene the next day to give their final decision.
A few minutes later, RJ's sister, Shelly, and his son, Chris, came to visit. I breathe a sigh of relief. They come into the room and make themselves at home, as a family. Shelly begins to braid RJ's hair while they chat away. With each strand of hair she tightens, the tension in the air unravels, and by the time Karen arrives for speech therapy, it is long gone.
The session begins with RJ holding each of the notes in the "Doh, Ray, Mee, Fah, So, La Ti, Doh," scale. The pride Shelly and Chris felt was palpable. Two weeks ago, that task was impossible for RJ. I was touched and humbled to be a witness in that moment.
I realized that up to this point I only considered the effects of RJ's incident on just RJ himself. How could I have neglected to consider the effects it has on others in his life? He was receiving at least five calls a day from family, friends, and former students (RJ was a teacher), all wishing him well and a swift recovery. His room was filled with balloons and his window decorated with cards.
At the end of his speech therapy session, I said my evening goodbyes and took off for the rest of the day. I wanted to give RJ time with his family and I wanted time for me, to be alone with my own thoughts on my way home.
Thursday, February 16th – Day 4: The Verdict
RJ and I go through the usual routine, flying through the OT and PT sessions. As the day progresses, the time for when the medical team would issue their verdict, loomed overhead. The moment came upon us too quickly.
I was sitting and chatting away with RJ in his room, shortly after finishing lunch. I could tell he was still a little irritated about yesterday's meeting and anxious for the upcoming one. Then, the social worker came into the room. The verdict was made: RJ has to leave by Friday, no exceptions. He is medically stable, has progressed enormously, and in the team's opinion, he is safe to be discharged home; he is just a little anxious.
I watched RJ take a couple of seconds to process the news silently. With a choppy voice, he begins to reiterate his argument that he is not comfortable going home by himself and all he needs is just a few extra days until he can go by his niece. The social worker again explained that his insurance will not cover any extra days and that they can make sure that he goes to the top of the list for a home health aide. RJ replies, his voice breaking and eyes subtly watering, that he knows this isn't her fault, that he just has a couple of calls to make, but not to worry; he will be alright by God's blessing. He didn't sound convinced with his own statement.
Sitting through this exchange was one of the most uncomfortable and difficult times I have had in my medical school career thus far. I feel torn between the two sides. My heart breaks for RJ in this moment. The news must have felt like he was given an eviction notice, that he was about to be left in the cold. He was the perfect patient, 100% compliant, and always had a smile. But there are other patients, perhaps sicker and more disabled than RJ, who need his bed. What about them? Inner turmoil wreaks havoc within me until their exchange concludes and the social worker exits the room.
I look at RJ and watch him struggling to form words as tears well up in the corner of his eyes. He finally is able to tell me that he would like to lie down now. It is a good time for me to go. I hand him a card where I thanked him for agreeing to participate in this project and take my leave as he slowly makes his way to the bed.
The End of My Journey… Still Just the Beginning of RJ's
The four days I spent with RJ were rewarding yet emotionally taxing. It is difficult to describe how it felt to be present for and experience a part of someone's life during a time of such vulnerability and challenge. I was able to watch RJ tackle his adversity head on and work tirelessly toward recovery, all the while catching a glimpse of the frustrations beneath the surface.
The goal of the project was to gain appreciation for some of the struggles experienced by our patients. As a medical provider, I find that we all overlook the numerous battles that our patients experience throughout each day. What is most thought-provoking for me, is that I only spent a few hours each day with RJ, and within that short time, I was on an emotional rollercoaster. What defeats and victories had RJ experienced in the many hours I was not there to observe?
Among the many lessons I learned from RJ in those four day, there is one that will forever shape my practice of medicine: Treat the patient, not the disease. I know, I know, it is as cliche as it gets. We think we're doing this as providers, but many times we aren't. For example, a patient is not comforted by lab values or new medications. They are comforted by a smile and reassuring presence, or simply by having someone to talk to. How many hours are our patients laying in their beds with nothing but their thoughts and their roommate's cries? How many times do we forget to see how the family is handling their loved one's illness? How long do we make people wait with full bladders and not allow them to go to the bathroom?
I want to be a doctor, a healer. Not someone who just sees diseases, medications, and lab values. I hope that through my experience with RJ, I will remember to see my patients for the unique people they are and the unique stories they have to tell.
Author's Note: "I am a member of the Gold Humanism Honour Society(GHHS) . Every year from Feb 13 - Feb 17 is Solidarity week, during which GHHS members work on projects that are very much focused on humanism in medicine. For my project, I spent a week with a patient accompanying him to all of his appointments for that week and then I wrote this piece about that experience."