“Choking But Not Heard”: A Case Study from Pakistan
A collaborative global health case study by Abdul Nadir, MD(1), David Beyda, MD(2) and Jen Hartmark-Hill, MD(3)
Assistant Professor University of Arizona, Department of Medicine, Attending Gastroenterologist
Chair, Department of Bioethics & Medical Humanism, University of Arizona College of Medicine-Phoenix
Director, Program for Narrative Medicine & Health Humanities, University of Arizona College of Medicine-Phoenix
I glanced up at her as she entered the clinic room. Clad in a Pakistani attire consisting of printed, dark green headscarf, bottle-green floral knee-length shirt and straight-cut pants, she appeared tall, but pencil thin. Even though her almond eyes glistened as she looked around the room, she had the look of grave illness. Her parents, who accompanied her, led her to a chair. Dad had a salt and pepper beard; mom donned a scarf. They were also very thin but appeared healthy.
I started with the routine questions. “How are you doing?”
In a weak and hoarse voice, pausing frequently to clear her throat, she replied.
“You remember … the patient … who you diagnosed with stomach cancer? Her daughter is my friend and they … recommended me to see you.”
Dad did most of the talking on our first encounter, “Doctor please do whatever you feel is necessary to find out what is wrong. We are ready for anything.”
He was clearly anxious, speaking hastily. “She has been vomiting almost daily; she cannot keep anything down.”
Mom quietly murmured a prayer while rolling the rosary beads between her fingers, tears streaming down her cheeks.
I started sifting through the stack of papers lying on my table to check her prior investigations and prescriptions they had brought.
“How long have you been ill?” I continued asking questions while reviewing her medical records.
She began her story, “It was two years ago in December, when I started having difficulty swallowing liquids.”
I interrupted, “Were solids a problem?”
“Sometimes solids also, but mostly liquids,” she replied.
I learned that Farah lived 30 miles North of Islamabad in Wah Cantt, a garrison town, surrounded by mountains, quite developed, with reasonable medical facilities and abundant doctors in private practice.
She continued, “I saw a medical specialist in Wah who referred me to the Military Hospital in Rawalpindi to undergo upper endoscopy.”
The upper endoscopy was reported normal and she was placed on acid suppressing pills, provisionally diagnosed with Gastroesophageal Reflux Disease (GERD).
Just twenty-two years old, she had been an excellent student. After securing 85% marks in pre-engineering, she entered the prestigious National University of Science and Technology (NUST), a school managed by active Pakistan army officers. When she first noticed her symptoms, she was in the third semester of the Mechatronics Engineering program and had a perfect GPA.
“I was living with my parents, but closer to the time of my final exams, I would move to the hostel so I could study with friends.”
For six months following the initial endoscopy, she continued to experience intermittent difficulty swallowing, but braved it, feeling assured that as her test was normal, and her symptoms would get better. Despite the nagging swallowing difficulty, she was able to concentrate and kept up with her good grades. When she ate with her parents, brother and sister, she would notice it would take twice the time to get her food down. They would always finish before her. To save time, she started reading while eating. Eventually, as her bowel movements started becoming erratic (sometimes she would not even have a single bowel movement the whole week), she decided to seek medical attention again.
A family physician in Wah told her, “You need to manage your diet. Eat vegetables, no flour and apples though.” He gave Farah an acid suppressant pill, an anti-depressant, multivitamin, fiber supplement and folic acid. But three months later, she was still struggling and broke down in front of the doctor. “You are not doing much for me,” she said.
“I was rude and emotional, and I cried,” she told me.
Her physician tried to talk her into seeing a psychiatrist, claiming it would help her, but she didn’t agree.
“I felt it was the difficulty with swallowing which frustrated me and brought out my emotions,
not the other way around.”
She started vomiting and sometimes she would vomit so forcefully and so much food came out, she felt she had emptied her guts of all the food she had eaten in the last few days. Still she continued to attend classes at NUST regularly between 8 AM to 5 PM every day. One day while she was working on a project, she had a sudden urge to vomit and had to run to the closest garbage can, a couple of hundred yards away.
Some of the students in the university and even some family members suspected she was vomiting on purpose. So Farah started hiding vomiting spells even from her parents, as she felt ashamed that they might also think she was inducing the vomiting on her own. Finally, she moved full-time to the NUST hostel so she could take care of herself, rather than be a burden on her family.
She started restricting her diet, mostly eating rice and lentils, in hopes she could figure out if there was a food that would make her vomit. In this manner, she started managing her health on her own. But after a couple of weeks of trying, she started coughing upon lying down in her bed at night. She could not even sleep after propping herself up in the bed with two pillows. She was missing her family terribly and returned home.
Her dad urged her to see another doctor, who prescribed a sleeping pill, a new antidepressant with more anti-cholinergic effect and sucralfate to coat her esophagus to sooth her. This new doctor appeared sincere and would listen. He told her that he was sure there was nothing wrong with her.
He added, with conviction, “If you were not curable, I would have given you only a multivitamin, not medications that I am giving you. My daughter is your age, she just looks like you. You are OK.”*
*Author Footnote: In Pakistan, it is common practice to prescribe only multivitamins to patients who have a terminal (cancer) diagnosis to provide hope, but to withhold the diagnosis.
Before she would go to the next visit with the doctor, she would prostate and pray that God would give wisdom to this doctor to find out what is wrong and fix her. She would call her school friends for solace, particularly those she spent her childhood with.
By the time of her final exams of her sixth semester at NUST, her frustration had overwhelmed her. She felt unprepared and not strong enough to sit through her exams. Her friend told her on the phone, “If you are not well, go home, skip the exam.” She did, but this did not go well with the brigadier in the command. He told her in no uncertain terms, “You cannot skip final exam unless you are dying.” She could not reply, but thought to herself, “I am dying, no one understands except my family.”
The next day, she got called in for a meeting by the head of the department. She remembered that the meeting was set up like a courtroom, except that she was her own attorney. There were five men in the room, and they grilled her for a while.
“Why did you skip the exam?”
“How come you got sick on Friday and couldn’t take the test, but then you were back to the campus alright on Monday, it makes no sense.”
Some supported her, saying, “If she brings her sick certificate, we can let her sit in the exam again.”
Farah returned to her current physician, as he had seen her just a few days before she missed the exam and appeared sincere. But this time he was not so nice and said curtly, “I cannot give you the certificate.”
As she tried to reason with him, his secretary barged into the room to ask her to leave, stating there were other patients waiting for the doctor.
Farah felt humiliated. She wanted to leave NUST, but dad was supportive and convinced her to keep going. Another doctor who had seen her earlier did provide the sick certificate, but only because her dad’s friend had called the doctor and he obliged.
After that, she was asked to see a well-known general physician who charged three times the fees of lesser-known doctors. She saw him three times, but he only gave her the same medications with different trade names. Then he also concluded she needed a psychiatrist. She said no. The physician then asked her to be admitted to his hospital in downtown Rawalpindi. When she showed up with her parents, the admission was declined, and some different medications were prescribed. She felt this physician was a con artist, and her frustrations grew.
Next, she consulted with a new gastroenterologist. He rolled her into the endoscopy suite, but upon reviewing records just before starting the endoscopy, he changed his mind and told her that he was 99% sure her stomach was OK and another endoscopy was not justified. He advised her to see a shrink, given that blood work, ultrasound and endoscopy were all normal.
By this time, she had lost 10 kg. Now weighing only 36 kg, she agreed to see a psychiatrist.
At the psychiatrist’s office, Farah recalled that she somehow gathered enough strength to communicate her story. When she finished, the psychiatrist mumbled, “Were you always like this all your life?”
She felt the psychiatrist was just going through the motions, and not listening to a word she had said. Farah broke down and walked out of the clinic extremely disheartened. She never went back.
Yet another doctor in Wah convinced her to get admitted to the hospital for three days so more thorough investigations could be done. There, a medical specialist diagnosed her with cycling vomiting syndrome. She was told this could only be managed after identifying her underlying psychological stressors. They told her that she was “not opening up” about her emotional state, implying she was not being candid. She continued trying to tell them time and again, “It is my health that is affecting my mind, nothing is wrong with my mind.” Farah could not convince anyone.
Family and friends were now urging her to visit faith healers and homeopaths. One of the “healers” was famed for having genies under his control. This man was recommended from the village of Madrota, Attock, where her family was originally from. When she saw him, he repeatedly swung a heavy, blunt iron knife across the mid-line of her chest, gesturing as if he was trying to figure out why she was vomiting. It hurt her and left multiple, small pits in the tissue over sternum. When she saw me for a consultation, the wounds were still healing.
Another religious man asked her to swallow the Quranic verses he had jotted down on a piece of paper, which he had dipped in a glass of water. Farah had faith, and firmly believed God would help her, but she did not trust the faith healers who claimed to have Superpowers. However, she shared that she was so desperate to regain her health, that when family asked her to see such people, she could not refuse. She kept going to visits.
One of the "healers" told her, “The Body is cured by God. Take care of it. Your intention should be to bring your body to its original shape.” He asked her to meditate. “Say loudly, Allah ho! Allah ho! Deep breath in; deep breath out”. He also gave her a potion to dissolve in three bottles to “cure the gas problem”.
When she saw the homeopathic practitioner, she recalled how he stuck her thumb with a lancet and asked her to press it on a round paper. He did not send the blood to a lab, but rather gave her four sheets of paper with images of different body organs on them along with the blood stamped circle on each page. He also asked her to swallow several small tablets five to six times daily.
Her final visit before seeing me was at a tertiary care hospital, where a gastroenterologist told her on the first visit told her he would like to repeat another endoscopy. In the same breath he said, “I think it will be totally normal and would not really help diagnose your condition.”
Even though she was on schedule for the endoscopy, she couldn’t bring herself to see him again.
During all this time, Farah had not completely lost hope. If she did not vomit one day, she felt she was improving. Then she would start the cycle of vomiting again, and hope faded. Optimism returned each time she had another good day. She would observe and remember what she really ate or did on a good day to repeat the same regimen daily to avoid vomiting, but nothing worked.
The extended family came and visited her many times, but this only served as a source of irritation to her. No one seemed to sincerely believe her.
By the time one of her close friends asked her to consult with me, she had to be convinced by her parents to come. She did not have any reason to hope that I would give her a diagnosis or solve her problems.
As Farah continued to speak, each time, I noted she would clear her throat. I worried that there might be something wrong with the structure of her esophagus, rather than a functional or psychological disorder. As we spoke, I did not get the sense that she was purposely inducing vomiting, even though all blood work and her endoscopy was reported as normal.
I wanted to help, and knew I needed to do so without delay.
I reassured them, “I will leave no stone unturned to figure out what is going on, whether I need to repeat another endoscopy or do CT imaging of her chest.”
Her parents nodded in complete agreement. I suggested them to allow me to perform an endoscopy on the same day of her first visit. They agreed.
In the endoscopy suite, the technician asked Farah to gargle with 2% Xylocaine and swallow. She swallowed and then heaved but did not vomit. To prevent aspiration, I did not sedate her.
“It is not a painful test and many of our patients tolerate it without experiencing any problem after just swallowing the numbing medication. I will talk to you throughout the procedure,” I said to calm her fears.
I placed the scope in her mouth and gently drove it to the back of the throat. I asked her to swallow, after which I gently pushed the scope into the esophagus. I saw that it was distended with opaque fluid and food particles immersed in it almost to the very top of the esophagus.
The words of my mentor in gastroenterology training echoed loud in my mind, “Retention of any food or water in esophagus is abnormal. Immediately after swallowing, the food enters the esophagus and within a second, esophageal peristalsis and relaxation of lower esophageal sphincter (LES) occur sequentially, facilitating the passage of food from the esophagus into the stomach.”
I quickly started suctioning the fluid so I could clear the field of vision.
By this time, Farah was loudly saying, “I am hurting! Pull the scope out!”
I tried relaxing her, but she pulled the scope out of her mouth on her own and ran to the garbage to vomit. There she squatted down to the floor.
“I cannot do this today. Please let me come tomorrow, and I will do it.”
I asked her to stay put. “It will take a couple of more minutes and we will have a diagnosis.”
The endoscopy technician and nurse both supported me. After a few minutes of argument, she gave in and I entered the esophagus again, which was now nearly empty. I slowly advanced the scope to LES, which appeared normal, although esophageal body was slightly dilated. I felt some resistance at LES, which I gently negotiated and pushed the scope in the stomach and then small bowel, both of which were devoid of any food and appeared normal. I took biopsies of both the Gastro-esophageal Junction (GEJ) and esophagus on my way out.
“You may have cardiac achalasia,” I said. “I will need to have you swallow contrast to take more X-rays of your food pipe to establish this diagnosis.”
“Can I come and do it tomorrow?” she asked.
“Please do it today,” I pleaded, and left for my clinic to see another patient.
The following day, Farah and her parents returned. We reviewed the barium x-ray results together. A typical bird-beak appearance was noted, and no contrast could be seen in the stomach. I told them this is achalasia and said I will think about the best possible management with the resources available in Islamabad.
I called my colleague, a soft-spoken, laparoscopic surgeon, who had completed his fellowship in Mayo Clinic, Minnesota. Not only did he feel he could successfully treat Farah’s condition, he was excited to be able to help. My main concern was that we did not have esophageal motility testing available in Islamabad. After reviewing the current medical literature, I felt based on her history and imaging that she had type II achalasia, which has been reported to respond well to surgical intervention. In one approach, a surgeon incises the hypertrophied smooth muscles of LES, an approach known as Heller’s Myotomy. This intervention allows enough relaxation for the food to pass from the esophagus into the stomach. Other possible options included rupturing the smooth muscles of LES using endoscopically guided balloon or the new technique Per-Oral-Enteral-Myotomy (POEM). POEM has been reported to have equal results to Heller’; however, there was no one who had this type of training in Islamabad, so I recommended to the family and to the surgeon to move forward with Heller’s.
Two weeks later, I was back in the US when I received an anxious text from Farah.
“Should we wait for the biopsy result before doing surgery?”
I replied, “Please go ahead with surgery.”
Her next text read, “When are you coming back?”
I replied, “November 4th.”
“My surgery is scheduled today at 2 PM.”
I wished her, “Good luck!”
A day later she texted again, “Surgery went well Alhamudulillah (thank God)!”
“Are you feeling better? Can you swallow?”, I wanted to know.
“Yes, Alhamdulillah, I am taking liquids only yet.”
I saw her the same day I arrived back to Islamabad. The surgeon called me into his office.
“Someone is waiting for you,” he said with a smile.
Farah was seated behind the desk, a radiant smile lighting her face.
She told me, “Had you not completed my endoscopy and did the barium x-ray the same day, I would have never returned. It was the first time I heard the term ‘Cardiac achalasia.’”
She had consented to surgery only after looking up cardiac achalasia on the internet and felt her symptoms matched exactly the description of achalasia on the internet.
She pointed to the surgeon, “Dr. Sahib told me this operation will be a life changing exercise. Indeed, it has been!”
Treating Physician’s Reflection(1):
After practicing gastroenterology for about two decades in US, I had moved to Pakistan knowing full well the obstacles I would face while attempting to provide good medical care to my patients. Nevertheless, I wanted the challenge and believed I could do a good job, as-long-as I could maintain focus and fire on all cylinders every day. I told myself, “If I leave US, many will replace me, but I will be potentially more valuable in Pakistan.”
Cases like Farah’s are not rare in Pakistan. Malpractice is common and many simple diagnoses are routinely missed. When a patient is harmed, or even dies, the typical answer is, “It is God’s will, everyone dies when they are destined to die, this is our faith.” In such a fatalistic society, where many problems are thought to be solved by divine intervention, there is so much room to make a difference.
Why was her diagnosis missed? Was it lack of empathy, shortage of time, no fear of accountability or sheer incompetence? Perhaps a combination of these? Clearly it was not related to lack of resources. Her dad is a landlord and spent quite a bit of money on her medical care in the two years that she suffered. Even gastroenterologists anchored on the diagnosis of a functional disorder because a single endoscopy was normal, without digging deeper in the cause of her persistent weight loss and nagging complaint of vomiting. We are taught in medical school to reconcile every symptom of a patient and tag it to a clear medical diagnosis, particularly before trivializing the symptom or labeling the patient as an attention seeker or mentally ill. When we fail, many con artists and quacks fill in the vacuum that is created because our patients lose faith in the medical profession. But the will to live keeps our patients going, until they are consumed by either a non-curable terminal illness or even an illness that is curable but not timely diagnosed. Farah didn’t lose hope, she had faith and to this day, firmly believes that God created the opportunity to see me and then gave me the insight to diagnose her achalasia.
When she saw me last, Farah had gained back 6 kg within 4 weeks of her surgery but was still anxious because her periods had stopped for several months. I told her this should go back to normal as she regains her weight. She continues to trust me and gives me a good reason to stay in Pakistan.
Bioethicist Physician’s Reflection(2): Every decision we make has a consequence that we own now and forever. Making the hard decisions at the bedside carries with them the moral and ethical quagmire of conscious and unconscious bias. How we make the decisions at the bedside are a reflection of our own moral foundation. Dr. Nadir has a character of virtue and compassion. These characteristics in physicians are sometimes elusive. Sometimes virtue and compassion for a patient can be a fool’s errand. Cynicism takes over when physicians are not able to be who they really are: healers. Moral distress and burnout can take over. We need to be focused, intentional and willing to be present when present. To be a servant to those who’ll come to us for help. The ethics of a therapeutic physician-patient relationship, centers on virtue and compassion. The patient is the focus. Dr. Nadir was focused, present and humble. His patient came first.
Narrative Medicine Physician’s Reflection(3):
Eliciting and honoring the patient’s story is key to practicing Evidence-Based Medicine (EBM). The current definition of EBM includes three “pillars” – the best available scientific knowledge and data, in the context of the clinician’s judgment and in consideration of the patient’s values.
In the care of Farah and her family, Dr. Nadir demonstrated high levels of ability and insight in all three.
While previous diagnostic exams are important data to be considered in patient care, they are not fail-proof. They are certainly subject to limitations of pre-test and post-test probabilities, finite positive and negative predictive values and the occasionally unreliable interpretation of findings by fallible human beings. Just as stories evolve over time, so do manifestations of disease and illness. What is subsurface or subclinical one year may manifest later on. Open-mindedness, excellent listening and communication skills, rapport-building, validation of the patient’s lived experiences, and a resistance to anchoring and other cognitive biases are among many key skills in developing diagnostic acumen.
It is for these reasons that AI remains a tool, and not a replacement for the therapeutic, trusting relationship that can be established between patient and physician/team. It is for this reason that the wisdom of Sir William Osler, regaled as the “Founder of Modern Medicine” and one of the “greatest diagnosticians” still rings true today: “Listen to your patient; [s]he is telling you the diagnosis.”
Final Reflection Questions for the Reader**:
What barriers do you encounter in your own clinical practice/training that could promote delayed diagnosis and care?
What clinical reasoning practices do you (or could you) intentionally engage in to avoid cognitive biases in diagnosing patients?
What intentional approaches do you take to better listen and communicate with patients, so they feel heard, respected and validated?
The authors grant permission for use of this publication for educational purposes.
Please cite as:
Nadir A, Beyda D, Hartmark-Hill J. Choking but not Heard: A Case Study from Pakistan. Stories-in-Medicine [Internet]. Phoenix: University of Arizona College of Medicine-Phoenix. 2020 May. Available from: https://storiesinmedicine.wixsite.com/uaphoenix
**To view responses to these questions from Dr. Nadir, please visit: https://bit.ly/2TctKfy