Tell Me About That

A physician reflects on pain, attention, and the ethics of caregiving.

Molly Mendoza

Before things went sideways, I liked being a doctor. I liked the way my patients looked up, quick and eager, when I entered the exam room. I liked being able to give people what they needed, even if it was just reassurance, validation, or a referral elsewhere. I even liked the cluttered workroom where doctors hunched over phones and computers, typing notes, calling consultants, and digging through the paperwork that spilled out of plastic organizers. Each organizer was filled with pressing tasks: fill out this form so the insurance company will cover the medication, sign that fax from the pharmacy, answer the messages from patients who need refills—often for pain pills, often urgently, often earlier than expected.

Before I understood that what was needed was attention and time, not easy answers to sorrowful problems, I was looking forward to our life in Oregon. We moved to Portland just a few weeks before I started my new job, and we stayed in a short-term rental on the east side of town until we found a more permanent place to live. It was the summer of 2004, and in the excitement of the move, my husband, Pete, and I didn’t think to ask whether the place was furnished or whether the kitchen had pans, a coffee maker, or a microwave. In the mornings, we ate cereal out of Tupperware and poured hot water over Folger’s crystals as August light streamed through curtainless windows. At night, we slept on the bedroom carpet, snuggled in sleeping bags next to our three-year-old son, Sam. We didn’t mind. We were giddy with possibility. Even on the floor, I slept deeply through the night, ready to wake up and do work where I would make a difference.

 

As a new primary care physician, I had a gentle clinic schedule for my first several weeks of work. Most of my patients were being transferred to me from other doctors, physicians who were cutting back or even leaving practice altogether, tired of the grind. We were still using paper charts, and the patients came with bulging tomes I needed to review. Initially, the records were daunting—all the details, everyone so different. But after a month or so, they didn’t seem so different after all: diabetes, depression, back pain, diabetes, depression, knee pain, diabetes, diabetes. Pain everywhere, all over.

One day during those first few weeks, my schedule showed I would be seeing a new patient, a woman in her late fifties. Chief complaint: vision changes. I asked the nurse to have the patient read the eye chart before putting her in the exam room. A few minutes later, I saw them standing together at the end of the hall as the woman dutifully read down the line of letters on the sign posted several feet away. The patient herself looked sensible and formidable: gray hair chopped just at her jawline, no makeup, loose linen pants, comfortable shoes, no smile. Later, when I entered the exam room and cheerfully reported that her vision was better than mine, she scowled and nodded, sharp and brief, the way you nod when someone is telling you something you already know and it is irritating. I asked if she was seeing spots in front of her eyes or seeing double. She shook her head and looked so annoyed I stopped talking and just sat there, rummaging around in my mind for the right question. I wasn’t trying to give her a quiet space to open up or sitting consciously in silent company with her distress—though those would have been good ideas. I was just confused. But in my confused silence, she started to speak. Her voice cracked, and she started to cry. She told me the problem wasn’t her eyes. It was the skin around her eyes, which was drooping as she aged. She never thought she’d be the kind of woman who cared.

“There is no shame,” I said, “in meeting with a surgeon. No shame in getting an opinion.”

On the one hand, all I did was get silently confused and then make a referral to plastic surgery. It was nothing. She wasn’t sick, just sad and aging. On the other hand, I had been quiet enough that she had time to gather her courage, fracture, and speak. I knew that if I had checked the boxes on my symptom list, assured her she was fine, and let her know she was welcome to come back anytime if something else ailed her, she would have nodded again, in that sharp, brief, unhappy way, and said nothing.

 

In the hospital and the clinic, those hidden stories were the stories I craved. The ones that delved into the meaty heart of meaning: How should I live? How should I die? How do I carry this pain?

Again and again, a physical exam would crack open a story or begin a conversation that would never have otherwise occurred. Another patient, a woman in her late seventies, revealed a large chest tattoo when I asked her to unbutton her blouse: the words Do Not Resuscitate rendered in florid script. She told me her husband’s ribs had been cracked by hospital staff in a futile attempt to give him a few more painful weeks at the end of a long illness. She couldn’t undo that horror, she said, but she could ensure she would never endure it herself.

That tattoo was an ornate, glorious warning, a big middle finger to a system that might presume to know what was best for her without knowing her, her history, or her values. I surprised myself with a happy bark of laughter. She grinned back and removed her shirt entirely to ensure an unimpeded view.

That night, I called my dad, a retired physician himself, and told him about the tattooed lady. “Are you shitting me?” he said, “I’ve got to get a tattoo like that myself!”

“Don’t we all,” I replied. “Don’t we all.”

 

In September, Pete and I put Sam in preschool and bought our first home, a little green bungalow in Northeast Portland that had stolen my heart with its pretty garden and fig tree. As the weather turned colder and the days darker, my work escalated. The gentle clinic ramp-up was over, and I was expected to be efficient and carry a full patient load.

Before he retired, my father had run his own primary care practice. This was not my father’s world. Most primary care doctors no longer worked in their own small practices, on their own time. Whether associated with hospitals, universities, or other organizations, we worked for large health systems. That meant we were all doctors, but we were also all employees. We were protected against risk and had paid vacations, health-care benefits, and retirement plans. But we also had productivity requirements. I was expected to see a certain number of patients per day and to document the visits with enough elements of care to bill at the highest level possible. I was being paid a salary to see these patients, and I needed to make the system enough money to account for that.

I had twenty minutes per patient, which was more than some of my colleagues had, but many of the patients who were being transferred to me from other providers were medically complicated—heart disease, uncontrolled diabetes, lungs that were giving out. Or they had pains I didn’t understand and couldn’t pin down. I was only just beginning to hear doubts about the use of opioids; my colleagues occasionally wondered if maybe we prescribed too much. But no one advocated stopping—not my colleagues, not the pain experts, and certainly not the pharmaceutical companies.

I scoured the records of new patients as quickly as I could. If the patient was a pain patient, I prayed that somehow along the way a previous provider had forgotten to order a thyroid test or neglected to wonder about lupus. I hoped that I could order blood work—that I could try, for at least one visit, to do something different and better, before agreeing that I too should just refill the oxycodone.

I noticed knots in my neck and shoulders. One patient was late. One had just lost her job and soon her insurance. One was so lonely he wanted to die. Another was furious that I wouldn’t raise her dose of Valium. Or I was late, rushing from preschool drop-off, where I had wanted to linger, watching Sam navigate Lego politics, desperate for details about the life he led while I was at work. My pager was going off. My patients were angry. I was missing my boy. I was behind and behind and behind.

It embarrassed me that I couldn’t keep up. Other doctors took care of hundreds more patients than I did. Some of them made a practice of regularly double-booking appointments—scheduling two patients for the same time slot. Often this was done out of compassion—patients needed to be seen, there were only so many appointments in a day, and providers wedged them into spaces that didn’t exist. But the practice also helped keep productivity up. It was like what airlines do: overbook a flight, pray some of the passengers don’t make it, and scramble frantically when they do. Sometimes I would see those providers’ patients on an urgent basis in the clinic, or in the hospital if they’d been admitted, and I would read the physicians’ notes. One doctor wrote notes without capitalization or punctuation, just staccato thoughts, as if he were thinking, typing, and walking at the same time: “rash—hepc related? check labs rtc 1 to 2 wk, maybe addnl tests then, possible derm consult.” I imagined the patient, hair blowing slightly in the breeze as the doctor approached and blew right past. 

 

By the time we had our first freezing rain, Pete had found a full-time job, and I was drowning in overwhelm and shame. My patients seemed to be speaking a secret language of symptoms. Fatigue meant sadness, insomnia meant isolation and despair, and I was too clumsy or rushed or ignorant to understand what they were really saying. I started them on pills for depression and pills for sleep. And sometimes, when they began to feel their heartache in their backs and shoulders and knees, I prescribed Vicodin, oxycodone, and morphine.

One of my early winter patients was on the far side of thirty and worked as a paralegal. During her first visit, she said that she had been taking oxycodone for a few years to dull a pain that was diffuse, unremitting, and increasingly debilitating. Her previous doctor had recognized that the pills were her only relief, and thank God for that man. She’d been devastated when he told her he was retiring, but then he’d referred her to me. It meant everything to know I was here and would help.

Her exam was normal, and her tests were normal. But when I asked her to point to the pain scale on the wall, she pointed to the face on the far right, the saddest one of all, and I refilled her prescription.

The next time I saw her, she told me that she and her new husband, married just a few months, were fighting all the time. He was frustrated with her complaints, and he didn’t understand her pain. In fact, they barely spoke anymore. When they did, he could be so unkind. But she had no one else. If I would raise her oxycodone dose, she said, she might feel better, and maybe they could save the marriage. So I did.

I raised it again a few months later when she told me pain interfered with her work. In fact, sometimes it was so severe, she didn’t get out of bed at all. There were doubts in the back of my mind. She isn’t getting better. Maybe the pills aren’t helping. But I only had twenty minutes, and there were other patients to see, and everyone was so sick, and their diseases were only the half of it. They had diabetes but no money for the medication. They were depressed, but no friends or family seemed to care. They had high blood pressure but were too tired at the end of a long day on their feet to walk—and anyway, their neighborhoods had no sidewalks.

And there she was with a simple answer to a complicated problem. Besides, I told myself, who knew better than she what helped and what did not?

I had tried other things. I referred her to specialists, who referred her back to me, with nothing they could add and nothing they would change. I suggested physical therapy. She went once and didn’t like it, which was fine, because once was exactly what her insurance allowed. I suggested massage, maybe yoga. A chiropractor? But none of those services were covered, and she wasn’t interested in shelling out increasingly scarce cash for services that might help when insurance covered the entire bill for pills that definitely helped.

Eventually, it got too hard. She was in pain and desperate, and I had my own collection of ugly feelings: confusion, resentment, guilt, sadness, even boredom. Here was the same complaint; here was the same solution. I spent so much energy keeping the ugly feelings at bay, I had nothing left. So I abandoned her. My body kept showing up in the room, but it was accompanied only by the parts of my mind necessary to say “mm-hmm” or “that bad?” The rest of me stayed away, far away, busy wondering if the patients in the waiting room were angry, if I would make it to preschool pickup on time, if I needed to get groceries. Were there any saltines left in my office drawer?

So I wasn’t actually present when she asked me to fill out the form that would give her a handicapped parking space, and it took my wandering mind a little while to arrive. First, I had to stop checking off to-dos in my head and delay the magic trick I was planning next, the one where I took those to-dos and transformed them into resentments to be lobbed at Pete when he least expected it. Then I sidestepped thoughts of my next patient and opened the mental door I had closed against her need.

When the rest of me came back into the room, I was shocked. The first time I met her I’d noted that she was carrying some excess weight—just a few extra pounds she’d work on, she said, once she got her pain under control. In my mental absence, she’d grown heavier, but she was heavy in a different way, too. Heavy like there was no light anywhere. Heavy like someone buried alive, with the weight of the mud and sand and grit and roots and worms bearing down on her.

She looked up and told me, “I can barely walk. The pain is too much, and it is getting worse, and I need that parking space. And I need a higher dose. Otherwise, I’ll lose my job.”

“Mary,” I said, so nervous. “I think you can walk from the parking lot. I think you should walk. I think you aren’t doing well, and I think the oxycodone is just making it worse.”

While I’d been hiding behind my closed door, Mary had been hiding as well, her only company oxycodone. Hiding, I suppose, from whatever demons chased her. I’d helped. I never probed about her lonely marriage or lack of friends. The opioids had kepther buried where the demons would never find her.

 

That night, Pete, Sam, and I ate Costco lasagna still frozen in the middle because I had no more patience left for anything, even pasta. Afterward, while Pete did the dishes, I read Sam a story about a wizard who conjures a pancake machine that won't shut off and nearly buries the kingdom. Pay attention, I told myself. Pay attention. Pay attention.

But my mind slipped away, and I was back on my low stool in the exam room. Mary was gone, and I was finally attentive, if only to her chart, where I wrote truths: “Patient extremely frustrated,” and lies: “I would be happy to see her again if she chooses to return.” I finished my notes and stared blankly at the door, as if unsure how I got there and wondering if it were possible to escape.

Nothing changed overnight. There was no magical transformation, just a gradual understanding that I did not have the strength of character to withstand external expectations of efficiency, or my own need to keep up, or the lure of the deceptively handy tools of my trade.

 

I also got lucky. Colleagues saw me struggling and offered me a different path, which is its own story. But it meant that several months later, a doctor was showing me the ropes in a clinic that cared for patients who were unhoused, uninsured, and struggling with addiction. Up front was a small room where would-be patients waited on hard chairs or, if they were too sick to sit, lay on yoga mats on the scuffed linoleum floor. Among them was a bearded man with his head slumped low toward his legs, like it was too heavy to raise. When he checked in, I heard the woman behind the front desk say, with such warmth, “It is good to see you back! I was worried about you.” Later I watched a nurse, gentle with him, cupping his trembling hand in her own, helping him to guide the medication from the little white paper cup to his mouth.

The doctor and I examined a young patient with track marks and an angry skin infection where he’d injected a few days before. The doctor asked the young man whether he was still feeling withdrawal symptoms and peered at the tender red skin on his arm. He began to scribble an order for an antibiotic when the kid looked to the side, over at the battered cabinet where boxes of gauze, alcohol swabs, and lidocaine were stored, and said, as if he were speaking to the medical supplies, “I never thought I’d be the kind of guy who lived under a bridge.”

I had been in this moment before, the terrible moment at the end of a visit when it is clear the patient’s need is simply too big to fit the time or place. It was the moment when doctors like me, in other clinics, with patients who were housed and who could pay, pushed to wrap things up before the door of a patient’s need opened any wider. This story doesn’t have a fairy-tale ending. The system, the suffering, and the harm done are too awful for make-believe. But in that cramped exam room, there was wonder, and even a little heart-thump of joy, as the doctor stopped what he was doing, leaned back in his chair, and said, “Tell me about that.”

Comments

2 comments have been posted.

I find this piece very interesting and poignant. However, as the woman in your story about the chronic pain patient who requested a handicapped placard, I don't think you truly asked the right questions or validated the fact that there is sometimes pain without diagnosis or obvious cause. I have lived in chronic pain for 20 years, since being in a car wreck at 19. But I am lucky that I found compassionate doctors who would help me with my prescriptions when I needed it, and who encouraged me to keep looking for answers even though there wasn't a clear cause other than previous injury for the spinal, nerve and joint pain I was living with every day, all day long. It was 3 years ago I discovered a type of massage that is effective, allowing me to begin walking to lose weight, increasing my stamina, endurance, and reducing my prescription medications (including opioids). I have chose voluntarily to reduce myself by about 50% over the past 18-20 months, little by little. But the only way that was possible is by finding my own care plan, advocating for myself -- because similar to your story, it is clear that no doctor or physician/specialist, etc., will do so for me. I had to learn all of this the hard way and I managed to discover a great deal along the way. However, when I was a college student of 21, I had a handicapped placard of my own to allow me to park close to the buildings of my non-residential commuter college campus. Without it, I wouldn't have been able to cope with classes while living in pain. I understand doctor's can't see into the lives or hearts of their patients, and I am sympathetic that the American medical industry is completely out of any logical sense of true care for 99% of all patients. But compassion and support are key, as well as challenging your patients to try new and different things. Blaming your patient for being in an unhappy marriage, not socializing enough, not walking enough, and being overweight & unhappy, isn't a good enough justification for not doing your best as a physician. Trust me, I'm an expert in doctors at this point, but I have been lucky enough to know when I am being ignored and turned to a different option, a new physician, someone who will at least assist me in maintaining the minimum medicine I need to be a functional, full-time employee. We all need to support ourselves, and just because I've been living with this invisible disability for over 20 years now, doesn't mean I could stop working.

HW | May 2022 | Southern Oregon

This piece so captures the feelings so many of us in clinical care have/had. Thank goodness you were able to see where you could best contribute, and well utilize your gift for listening to stories (and conveying them).

Michelle Berlin | April 2022 | Portland OR

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Director's Note: Here, Gone, Still Here

Editor's Note: Care

Care Is the Only Useful Revolution

Tell Me About That

Making Pre-K Possible

Building a Bridge for Mental Health

Binding Fenrir

Simple Respect

Tug-of-War

Elopement

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Discussion Questions and Further Reading: Care