I know something of the training of physicians and I know something of the training of chaplains. They are very different forms of training. A physician relies on knowledge and experience in their work. A chaplain relies on presence and a therapeutic self. It is rare to find a chaplain or a physician who can cross over into the other realm in their work.
But the following long essay is by a physician who can and does cross over into that realm of presence and self-awareness that I write about so often as tools to enable us to face suffering. It is written by Mako Wakabayashi, a Japanese physician, a first-year resident in Internal Medicine, working in a hospital.
I first got to know her a year ago when a colleague in Japan asked if I could help her find a two-week experience, training in the United States in Family Medicine. Family Medicine has a very limited role in Japanese medicine but Mako had been exposed to its founding principles and felt that it was exactly the kind of medical care she wants to learn and provide.
Her training experience in a Family Medicine residency program in Springfield, Missouri had a profound impact on her. She found mentors as well as the freedom to explore what it means to care for someone in the way that feels closest to her deeply-held values. She especially saw and felt the significance of deeply understanding her patients because the patients’ background, ideas, and behavior influences their acceptance of their physician’s approach to treatment. As you will see below in her tales of two patients, without that acceptance a physician’s work can be frustrating and inefficient.
For both of these patients (whose names have been changed to protect their identity) you can feel her wrestling with issues of how to talk with those who suffer, or more accurately how to “be” with those who suffer. I have invited her to be a guest blogger precisely because she understands how that “being” demands the self-awareness of a chaplain. She understands that the mental and physical presence of a physician has a large impact on the quality of care provided.
I have retired from most of my professional work in training physicians, but I remain committed to aid any physician who understands how powerfully self-awareness can be of service to themselves and their patients. Hence my ongoing support for Mako Wakabayashi’s development. Now, listen to her stories. They are long, but this is a physician’s work in the trenches of health care.
Spring Green, Wisconsin
Case 1: in the outpatient clinic
My preceptor and I entered the patient’s room. The patient, Lucy, was new to us, a thin middle-aged woman with pale skin and long dry hair, swings her body back and forth as she sat, rubbing her hands. We introduced ourselves. She threw a glance at us, saying “Hi” to the ground with her hoarse voice.
The doctor, dressed in her usual flannel shirt instead of the white coat, sat on the step of examination table with a computer on her knees, looked up at Lucy and said, “How can we help you?” Lucy looked discouraged and said, “I have pain everywhere”. We asked her to tell us more, but she didn’t say anything more than “pain,” playing with her hair.
The doctor was reviewing Lucy’s past records, yet tried her best to keep eye contacts and said, “I see. I’m reading your past record and listening at the same time. I’m sorry about that. Please continue.” Lucy said, “That’s fine”. She continued, “It’s hard to live with pain. It never goes away. I had to take care of my grandchildren. I can’t do it anymore.” in soft but somewhat appealing voice. “What’s more, I have been having hard stools, which bothers me a lot”, she added.
We let her talk, asking questions in between. She repeatedly insisted on having severe pain and anxiety. We asked about her coping methods. She said, “Meds. I ran out of them and need more.” We told her that we’ll discuss it after physical examination.
Lucy has a history of appendicitis, thyroid nodules, cervical cancer, HCV, and skin abscess. She has used IV drug in the past. She has three children. We asked her if she smokes. Lucy said “I smoke one pack a day. I know it’s bad. I’ve already started to cut down.” The doctor gently smiled, “I’m glad to hear that. That’s great.” Lucy also smiled to us, “Thanks, I know I can quit”.
We asked her about her diet. “I try to eat healthy. A lot of fruits and veggies, and of course fish and meat.” she said. Her physician smiled and said, “OK, nice”. Lucy’s face became brighter. Her voice became more confident.
After going through her history, we started her physical examination. We examined her head, cranial nerve, nose, mouth, neck and hands, listened to her heart and lungs, examined her back, had her lie down and examined her abdomen. “Any pain?” her physician asked her while pressing her abdomen. “No, not pain but weird”, she knit her brows. We had her sit up, checked sensation, power, and her reflex with hands instead of a hammer. Lucy laughed said “that’s interesting”, seeing her legs moving. We assessed her gait. Surprisingly, she didn’t report much pain throughout the examinations other than mild discomfort.
We discussed the findings in lay language, and our plans for treatment including effective diet and medication for constipation, the risk of smoking, counseling and medication for her anxiety, and appropriate pain management. She agreed to have a blood test for thyroid assessment.
We asked her, “Any questions or concerns?”. Lucy said, “Thank you for listening to me. You really listened to and understood me. I appreciate that. I understood what you said. I feel ok now.” She smiled again.
Discussion of Case 1
From what she told us, I could tell that she may never been felt heard by doctors and has never had a chance to understand what is going on. Because of this, she may have thought that her feeling would be ignored anyways before we met. She has an extensive medical history and she could have been worried that something bad is going on. No wonder she was relatively reluctant to talk with us at the beginning of our conversation.
What made Lucy shift from being stressed and discouraged to being confident and open in this short encounter? This is the kind of question that fascinates me. One answer could be that the preceptor’s flannel shirt and her low sitting position relative to Lucy eased the power gap Lucy might have felt with doctors in the past. Another could be the doctor’s non-judgmental responses which gave Lucy confidence in herself and provided reassurance that this was the safe place to talk about herself.
In comparison to this American patient encounter, in Japan there are many practices that interfere with the kind of shift we experienced with Lucy. There, any doctor would dress in a white coat or in professional clothes. There, doctors are called “sensei” which is the same word as “teacher” in Japanese, reinforcing the perception that physicians simply give patients their recommendations in the way that a teacher provides information to students. Advanced testing and complex treatments lead to the assumption for both patients and physicians that educating patients is not worth the time it would take. In Japan, I often heard patients tell their doctors “I don’t know about medicine. Nothing to do other than leave it up to you, Sensei.” As a result, the patient may get the best treatment for their disease but not for themselves.
Then, what shifted Lucy from reporting pain at the beginning of the encounter to feeling relief by the end? Perhaps the thoroughness of the physical examinations showed respect for her report of pain “everywhere,” let her reevaluate her symptoms with us simultaneously, and helped her understand her doctor’s thinking about the causes.
Pain of course doesn’t always have a pathological basis but can also be caused by anxiety, fear, distrustful, and discouragement. When all are addressed, the pain can be diminished.
Case 2: in the hospital
Roy was a middle-aged homeless man with poorly-controlled type 1 diabetes, admitted to the hospital for “complicated ear infection”. It turned out not to be mastoiditis by the time I visited him with the resident who was assigned to his care. His record said he was recently admitted to the hospital for a similar ear infection on the same ear, got drainage, was discharged and lost to follow up.
I went to Roy’s room with the resident. He was lying on the bed with his eyes closed. He was wearing a cap and glasses. He was thin and bald and had dark-brownish rashes all over his body which seemed to be due to his insulin resistance. We introduced ourselves to him. He was nodded. The resident asked what has happened to him. He pointed to his right ear, which was swollen and red. He said, “It happened again.”
The ear auricle rotated anteriorly. As we guessed before we saw Roy, it required immediate drainage before the infection further spread and invaded the bone. The resident said, “Did you go to ear doctor after you were discharged last time?”. He said, “No,” playing with his hands. Silence. We said, “We’re going to take a look at your ear. That may cause some pain. We are sorry about that.” As we examined his ear, he was frowning a little. “Is it painful?” He nodded. The resident explained “You have a severe ear infection. We need to drain the abscess. Is that ok?” He nodded. “We will prepare and come back soon.”
We came back to Roy along with our team, meaning our attending physician, one senior resident, the junior resident who is his doctor, and me. The junior resident prepared for the drainage and said, “OK, we will make an incision to your ear and put the fluid out. The same thing you went through last time. You will feel pain. I am sorry.”
As the resident began, Roy appeared to be in a severe pain. I put my hand on his hand. I couldn’t say anything other than “You must be in a severe pain. I am sorry for that – we are here with you.” As the work proceeded I explained where are we now and how much longer it will take. He held my hand tightly, clenched his teeth, but never said a single word and never resisted. Each of us said to him, once in every 3 minutes or so, “It must be so painful. I am sorry for the pain. you’re doing a great job.”
The abscess was large. The resident packed it after she drained it as much as possible with the help of the senior resident. The attending was supervising. The resident said, “Ok, we finished. Thank you for your patience. Please take a rest for a while. We put a gauze on your ear.” Roy nodded. While the resident cleared the instruments, I talked to him, putting his things back as they were before we began.
When I asked Roy about his glasses, I realized that it is hard for him to wear due to the gauze bandage. “I think it hard for you to wear your glasses and cap right now.” I said, having no solution in my mind. “That’s fine. I can see,” he replied. I was relieved and said “Ok, I put your glasses on this table so that you can use when you need it.” He said “Thanks.”
We asked Roy “Do you feel pain? Anything you’re worried about? Anything you need right now?”. “No thanks,” he answered. He was already about to be fall asleep. We left his room.
Our plan was to monitor Roy overnight and discharge him on the next day after the discharge consult with otolaryngologist. His infection was so severe, which wasn’t drained completely yet, and the team felt he needed to receive follow-up care with a specialist. But our job was to make sure that he would see the otolaryngologist.
Another problem we also wanted to address was Roy’s high blood sugar. It was above 250 at that time. We needed to lower it down. The resident asked me to find out about his understanding of his diabetes and its management. This was our conversation when I went in to see him:
“Hi, how are you feeling?”
“How is your ear pain?”
“I see. It will take time for the fluid to completely come out but I hope you will get better soon. Any concerns about your ear right now?”
“I would like to ask about your diabetes. Your blood sugar is above 250 now which is high. We need to lower it down. High blood sugar is bad for your ear infection as well. OK?”
“Could you tell me more about your diabetes and how do you manage it?
“I have been having it for a long time. I use insulin.”
“I see, that must be hard. Do you check your blood sugar at home?”
“What is the normal range for you?”
“It changes. I know mine is always high compared to others but that is normal for me. I feel dizzy once it become below 160.”
“I see. How do you take insulin?”
“Before I eat. And if its high, I adjust it by myself.”
“Do you use any other type of insulin?”
“I used to, but that makes me feel dizzy. I will faint if I use it. I don’t want to use it. Not anymore.”
“Ok, any other thing you would like to share with me?”
“No…, wait, I used insulin flash but I had to change it to current regimen two years ago.”
“I see, do you know why?”
“Ok, thank you for sharing with me. I will discuss your blood sugar management with the resident.”
“Ok, thanks, good bye”.
It was hard to help Roy talk in his own words and to gain an understanding of what he was doing to manage his diabetes. It was, however, the first time he really talked. I knew that I didn’t have much time until we began management of his blood sugar but I was so happy I could finally spend some time and be able to hear him speaking more than one or two words at a time.
When I spoke to the resident, we understood Roy’s history. However, his blood sugar was too high to be left to his own management. We thought we needed to use insulin intensely to lower it down at least into a safe range. But we realized this most likely would conflict with his experience – “I know mine is always high compared to others but that is normal for me. I feel dizzy once it become below 160.”
Also, we thought we needed to start discussion on Roy’s blood sugar management in general as his base line itself was too high especially if he doesn’t have a primary care physician. I visited him with the resident. The resident explained our thoughts. He nodded but still said he was reluctant to use long acting insulin as he will lose consciousness.
The resident replied, “I understand you feel dizzy if you use another insulin and that you don’t want to use it. Your body becomes used to high blood sugar. So, you may feel dizzy at a higher blood sugar than other people do. However, it is not good for you. We would like to lower your blood sugar to a safer number overnight, using insulin. I know you are afraid of losing your consciousness, but you are in the hospital now and we will be closely monitoring you. How does that sound to you?” He nodded assent. And she explained how we would give him the insulin. Again, Roy nodded.
The next morning, Roy’s blood sugar had decreased but not as much as we expected. We visited him again. The resident asked him “Hi. How are you feeling?”
“Did you feel dizzy yesterday?”
“Your blood sugar is still high but it decreased. If you didn’t feel dizzy, I recommend that you to adjust your home regimen.” –
“No,” he said with his strong voice, looking at the window.
“I didn’t feel dizzy because I took sugar after I got that insulin.”
Roy’s answer left us without words for a while. When we explained our plan to him yesterday, he nodded, appeared to understand and agreed with the plan. But in reality he didn’t. He just acted like he was going along with our advice.
Now, the resident again explained to Roy the risk of high blood sugar and the need to lower down the threshold at which he feels dizzy by adjusting his insulin. The resident also explained that if we did it slowly, he wouldn’t feel dizzy and his body would eventually get use to the lower blood sugar. She also told him she was happy to be his primary care doctor and to do the work with him.
Roy nodded but declined the offer, saying that he had seen an endocrinologist.
After talking over Roy’s reluctance to follow our plan with our team, we decided to start afresh and ask him what he would like to take. So we visited him again.
The resident said, “We were sorry if we ignored your ideas. We would like to do our best for you. It is also true that your blood sugar needs to be lower. How much and what insulin do you think you would be able to take?” Roy tilted his head.
We gave Roy some example regimens as some options. After each one he either nodded agreement or shook his head. From this we decided what medicine to prescribe upon his discharge.
The resident said, “You will get the call from the ear doctor about follow up. Please make an appointment and see him. I know you didn’t last time but it is very important to cure it completely. Ok?” Roy sighed and said, “Ok.”
I asked Roy, “Was there any reason you couldn’t see them?” He said, “I didn’t get a call last time. I waited but nobody called me.” His face was angry rather than sad. The resident said “I am sorry about that. We will make sure that they will call you this time. But in case you don’t get a call from them again, I will give you their number. If you don’t get a call, please call them, OK?” The resident wrote down the phone number for his ear doctor. She also wrote the phone number for the hospital’s endocrinology department and said, “in case you need it”. He said, “Thank you” and smiled. He was discharged.
Discussion of Case 2
Roy initially didn’t talk much. He didn’t ask anything. He didn’t reveal much of himself. So it was hard for us to understand who he really is. Like Lucy in the Case 1, his minimal words and eye contact told us that he had already given up being heard.
Why did that happen to Roy? One reason could be his homelessness. Being homeless narrows down the choices people can make, possibly leaving him discouraged to say what he hoped for with his medical care. A homeless person may also fear judgement because of his or her living condition, leading to more of a power gap with their physicians than others might feel. The four doctors and one med student during the procedure around him must have been too many for him.
Reflecting on the impact of homelessness, I would like to share what I heard previously from some homeless people during an externship in Los Angeles, a city where homelessness is a large issue. My intention in recounting my memory of those I met is to provide some insight of the emotional impact of homelessness.
There were numerous people without permanent homes both inside and outside the hospital in LA. They were there almost every day. Sometimes I saw the same person was in the same place. I decided to talk to each of them in the hospital. I have heard a lot about them from the doctor at that time but I wanted to hear their own words. I decided to talk to them as a medical student at that time. I asked specifically how they feel about the doctor or hospital. Here are their voices. Each of them reflect some aspect of being homeless.
“The doctor was the last place I want to go.”
“They always judge me.”
“No doctor will believe what I am saying”
“I don’t have a house. The hospital is better than outside. It is safer and cleaner.”
“I just need antibiotics. I don’t need any advice.”
“We have so many problems you will never be able to handle.”
“I was the same person just as doctors till few years ago when I got injured and unemployed.”
As for my diabetic patient with the ear infection, another source of his distrust of the care we were offering would be Roy’s lack of support, including the fact that he didn’t have his family nearby. Having someone who connects to one deeply inside, or who understands one makes a huge difference. It would give one experience of being understood. He might not be physically alone as he should have someone living near his area, however, the problem is the fact that he was emotionally alone.
Having diabetes type 1 is a non-reversible, life-long illness, placing Roy in a difficult situation. It is well recognized in chronic illnesses that pain – from fibromyalgia for example – an alter patients’ behavior. Indeed, the impact of chronic illness in general on emotional regulation which further related to psychological distress and affect their behavior has been suggested1. Especially in his case, the contribution of a chronic condition to this particular medical interaction cannot be ignored given that he knew his difficulties in managing his diabetes and had suffered from a fear of hypoglycemic symptoms.
Our attitude of expertise and control definitely influenced our relationship with Roy. But that attitude was something we could have changed. Even though he was reluctant to talk, we should have still waited until he opened his mind to tell us his own story before we asked so many closed questions, working to resolve what he has been felt for a long time. It was only a few times but he did say “his words” to us and there was always the opportunity to listen to him. However, we didn’t do that enough.
Now I would like to think why we didn’t. One reason was that Roy was in relatively critical medical condition. In emergency situations where immediate action is warranted to save their life, we may need to not spend time fully addressing the patient and their concerns. That is what we are supposed to do as physicians. This is why the judgement used in addressing an emergency is very important.
But, it is also important that we circle back to the patient and their needs once they become stable. We didn’t do that for this man. I think we actually sought safety and our own comfort when the time with our patient was limited. It was true that high blood sugar added to severe infection is dangerous but being in that state for few days wouldn’t kill him. We were in a rush to make sure that he would help lower his blood sugar by the time he was discharged.
On the other hand, I think the resident working with Roy did her best, based on her limited time. The resident must have felt a lot of stress as a physician, making thoughtful discussions with the patient difficult. To be honest, I also felt frustrated about this case as it sounds like there is no solution nor right answer.
In retrospect, here are some things we could have done differently even with those difficulties:
- During the procedure, everyone should have sat down and talked to him more.
- We could have asked him why he missed his previous follow-up appointment at earlier time during his stay.
- After he said he doesn’t want to get more insulin, right away we should have asked what he wanted and why.
- More importantly, we should not have rushed for an immediate solution. We wasted valuable time before we could gain his trust.
- I have heard that some clinicians visit the places where homeless people live to gain their trust and offer some help. I believe understanding the context of a patient’s life, and offering some help so that they can come to us when they are ready someday are the best solution and make a huge difference. Opening our mind to our patient, showing compassionate and offering some help, and wait till they open their mind to us.
Reviewing these two cases, now we better know what to do. However, I have been overwhelmed with the difficulty of doing it in a clinical situation and how hard it is to wait with uncertainty. We need to always keep in mind that a patient’s feeling of being ignored is the price we pay for our sense of comfort and control. I want to be brave enough to face the patient’s needs without making my own a priority. It is better to suffer together and support each other, sometimes with coworkers and sometimes with patients. Practice this attitude again and again. Fail, reflect and try again. It will never end and it keeps making us a better physician and supporter for our patients as far as we continue practice.
1 Wierenga, K. L., Lehto, R. H. & Given, B. Emotion Regulation in Chronic Disease Populations: An Integrative Review. Res Theory Nurs Pract 31, 247-271, doi:10.1891/1541-65188.8.131.52 (2017).