etoc emailClick here to join the eTOC list or text TPJ to 22828. You will receive an Email notice with the Table of Contents of The Permanente Journal.

“Not Until I See My Other Doctor”



 

Henry Bair

Perm J 2020;24:19.033 [Full Citation]

https://doi.org/10.7812/TPP/19.033
E-pub: 11/22/2019

Abstract

This story is based on a series of encounters between the author—a medical student—and a hospitalized patient with terminal cancer. Over multiple conversations, the narrator becomes closely acquainted with the patient’s life and outlook, and helps her navigate an important decision regarding the course of her treatment. In the process, the narrator is given the opportunity to examine the limits of medicine and what matters to patients at the end of life.

The patient, Sadie (named changed to protect patient identity), was not pleased.

“It’s just so … drab in here,” she said, gazing around the small hospital room.

“Well,” I replied, “these rooms are designed to test how little aesthetic stimulation patients can endure. This hospital is a research institution, after all.”

She let out a chuckle, which was abruptly cut short by a wince.

Sadie was tall and thin, with wild, gray hair. Once a middle-school art teacher, she was now dying of uterine cancer that had been misdiagnosed several times. She had told me about her life and career. I knew about her past incorrect diagnoses from reading through her medical charts. However, as a preclinical medical student volunteering on the inpatient ward, I was not there to diagnose, interpret, or otherwise offer any medical advice.

“Here, this might help,” I said as I strode over to the window and pulled the curtain back. Sunlight steeped the room in a gentle golden glow.

Sadie grinned. “That’s better. Whose idea was it to paint these walls beige? Does anyone find beige inspiring?”

“I think my Uncle Jeremy did,” I said. “If you were to base inspiration off what a person chose to wear. Speaking of which, I like your head scarf.”

“Flatterer,” she said, but her hand went up to her head anyway to pat the silk fabric, magenta and teal with geometric shapes.

If you were to make assumptions on the basis of her appearance, Sadie was certainly inspired. In addition to the scarf, she wore a colorful kimono-style robe, a dark background splashed with vibrant hues of red, orange, and yellow, with strands of turquoise woven throughout.

“Now, I’m not saying beige should be eradicated or anything like that,” Sadie added. “But it’s incredible to me how many of these places are overrun with dull, stick-in-the-mud colors. I worked in a hospital in the Philippines years ago, and it had this amazing nature-influenced design. The place was littered with these decorations based on flowers and animals. And I could’ve sworn people were getting better faster over there!” She laughed, not a bitter laugh, but a genuine one, which was not something I’d heard much of during my time here.

It was impossible not to feel buoyed by her. Having expected to play a more active role in the medical care of inpatients, I had been disappointed when I first began volunteering at the hospital, with my offers of help repudiated over and over again by nurses who pointed to my lack of clinical experience. At times, I found myself struggling with a sense of my uselessness. Still, I came in, because spending time with these patients was a refreshing change of pace from nerve-fraying study sessions that went well into the wee hours of the morning.

“I feel like I’m going on and on about myself,” she said. “Which isn’t something I’m used to doing in this place, mind you. Most people who come in here treat me like a bag of symptoms. Why, I don’t think that last doctor I spoke to even noticed my new head scarf.”

“I enjoy hearing about you; you’ve had a really interesting life,” I said. And it was true. Before settling down 15 years ago to teach art at a local middle school, Sadie had studied painting in Florence and Paris, then served in the Peace Corps, teaching English and art in India, Nepal, and Bangladesh. She had then created a handicrafts trade network in Indonesia, before several stints managing art collections in Egypt and Morocco.

She cocked her head and remarked, “You look tired. Are you getting enough sleep?”

“Probably not.”

“I feel like that’s all I do here. Sleep, wake up, get poked and prodded, answer some questions. Often, it’s as if someone is talking to you but not really seeing you. Do you know what I mean?”

“Yes,” I said. Once, while shadowing a medical team as they discussed treatment options with an oncologic patient, I’d seen an oncology fellow prattle on about his research on the mortality statistics of an experimental immunotherapy for lung cancer, oblivious to the growing discomfort on the face of the woman before him who was dying of that very cancer.

“I can’t say it’s the most conducive to healing. Do you know what would make me feel better?”

“What?”

“Getting to look at some art. Now, I know a jaunt to the museum isn’t possible right now, but an art book or even a magazine…” She had a smile on her face, a conspiratorial gleam in her eye.

“Would you like me to bring an art book with me next time?” I asked.

Her face lit up. “I can’t think of anything that I’d like more.”

A week later, I returned to visit Sadie. Before I could enter her room, I heard a voice behind me: “Henry, what are those?”

I turned. It was Mia, the chief resident on Sadie’s medical team. She eyed the books I had under my arm.

“I just brought these in to look at with Sadie.”

She raised her eyebrows, looking mildly surprised. “That’s nice of you. She’d probably like a bit of distraction right now. We just had a meeting with her, to discuss options. The tumor has spread throughout her peritoneum, and though surgery is still an option, it’s an increasingly risky one. I think another round of chemo would be the best course. The last round wasn’t as successful as I’d hoped, but I think a higher dose could be beneficial.”

“What did Sadie say?”

“She wouldn’t say either way. In fact, she refused to hear anything else until she was able to consult with her doctor.”

I wondered why her attending physician had been absent from such an important meeting in the first place.

Mia beamed. “She’s asking for you.”

“Me?”

“We couldn’t figure it out at first—she kept saying ‘her doctor’ but then she referred to you by name. She said that you were the only person she felt knew her well enough to be able to help her make that sort of decision. So, just wanted to give you a heads up.”

I opened my mouth but nothing came out; instead I just nodded. As I walked toward Sadie’s room, I could hear Mia’s words in my head. The only person who knew her well enough. The statement was heartening yet distressing. I was barely qualified to draw blood and had given her no medical advice, yet she wanted to talk with me before making this all-important decision. It was a responsibility I knew I did not deserve.

I entered Sadie’s room and paused briefly as my nose prickled from the whiff of disinfectant, which seemed particularly acrid that day. Still lost in thought, I set the books on her bedside table.

“Klee!” she exclaimed, glancing at the cover of the top book, featuring Paul Klee’s art. “My favorite.” However, she didn’t make a move to pick them up. She looked at me closely. “I’m glad you showed up when you did. I’ve had quite the morning.”

I sat down and listened as she told me, in more detail than Mia had, what had transpired earlier with her medical team.

“I’m not someone to be characterized as bitter or negative,” she began.

Certainly not. I smiled, and she returned my smile, that same brightness there in her eyes. I told her, “It doesn’t surprise me at all to hear you say that. I think it’s really refreshing, the way you’re able to see things with such a positive outlook.”

“I’ll be honest—I’m not ready to die yet. I’m just not. I’ve lived my life for adventure, and there’s still so much out there I haven’t experienced.” For the briefest moment her eyes watered. She drew a sharp breath and continued, “But I’m done being angry about it—and trust me, there’ve been nights when all I wanted to do was bash in everything around me. What I really want is to enjoy the time now, because it sounds like I’m going to have even less time than I thought.” She looked at me. “What do you think I should do?”

“This is about you. I can’t make that choice. But I’m here to help you think it through for yourself.”

Sadie turned and looked out the window. The fluorescent light hummed softly in the background.

“I don’t want to do chemo again,” she said after a few moments, her gaze still fixed on the construction site across from our building. “It didn’t work the first or second time, so I don’t know why they think it will work the third time. I could feel every cell of my body soaking up that poison.”

“It’s not a foolproof method,” I said. “It does work for some people, but it is hard on the body.”

“And I don’t want surgery. I could hear what they were saying, even though no one came out and said it straight. I know they’re just trying to cover all their bases, but it sounds to me like there’s more risk in getting the surgery than not, but no one knows for sure. The doctors don’t know, I don’t know, you don’t know. I’d go in, and who knows if I’d make it back out? And God knows what the operation itself will do to me afterward.” She looked at the stack of books I had set on the bedside table. “Or I could choose what’s behind door number 3, which is to just let things play out how they will. To trust in the process, to enjoy the life I have left. None of us are going to be around forever, and though I might be leaving before I’d thought, I sure as hell want to spend what time I have left doing things that make me happy. Looking through those books you brought will make me happy. Getting to sit outside and feel the sun on my face. A bouquet of fresh flowers. I might even be able to convince my appetite to perk up and indulge in an almond croissant. Those are my favorite.” A smile touched the corners of her mouth as she looked at me. “And hopefully enjoy a few more chats with you, Henry.”

“I’d like that very much,” I said. “And I think it sounds like you know what you want to do.”

“Maybe I knew it all along. But it didn’t feel like it when all those doctors were in here, presenting me with all their grand ideas of how we should proceed. They wanted me to give them an answer then and there, like it’s the sort of thing you wouldn’t need to talk over with someone. And I knew you were coming in today, so I told them I won’t make a decision, not until I see my other doctor about it.” The smile widened. “I said that to them, too—called you my other doctor!” The smile expanded into a laugh.

I felt my face flush, but smiled, too, because Sadie’s laugh was contagious. “I’m not a doctor, though,” I said. “Not yet, anyway. I think I mentioned that when we first met, but … I just wanted to remind you.” Perhaps this was me covering my own bases, wanting to make sure that Sadie understood I was not yet in possession of the knowledge and expertise of those on her medical team.

She raised an eyebrow. “Reminder not necessary. Henry, I don’t want you to think I don’t appreciate all the knowledge and expertise the doctors and nurses here have. I know they’re doing their best. I can’t help but be impressed by how thorough and professional the staff is. But … when you’re here, you make me feel some semblance of my regular old self. And right now, I appreciate that more than all the medical knowledge in the world. I know you’ll be a wonderful doctor, because you see the whole person.”

I thought about the long hours, the often-grueling tasks, and the large caseload Sadie’s medical team had to handle on a daily basis. The members of her team simply did not have much time to devote to each patient. A troubling thought crossed my mind.

“That’s kind of you to say,” I said, feeling myself redden even more. “I do wonder though …” I paused, unsure if I should continue. Sadie gave me an encouraging look, a look I could see her giving one of her more timid students, and I went on, “Sometimes I wonder if things will change when I’m a doctor, when I’ve got a lot of patients under my care. Maybe our relationship is only possible because I’m just a student and don’t have all the responsibilities a doctor has.”

“We’re all students, in some way or another,” Sadie mused. “But I hear your concern. And I’d imagine, for some people, it’s probably exactly like that. But I don’t think it has to be. Do you know why?”

I shook my head.

“Because you don’t have to let it. Just don’t let yourself forget how important it is. And you know what? I’m not demanding every doctor to spend hours with me, getting to know me, as you have. All I wish is for my doctor to slow down and connect with me, even for a few minutes—to acknowledge and contemplate the gravity of my situation. I know they’re probably taking care of 10 other patients with the same cancer I have … but for me, it’s the first and only time I’ll experience it. And it’s terrifying.”

“I’m not sure how easy that is for doctors.”

“It’s not easy, necessarily. But it’s possible. And in the short time I’ve known you, Henry, I believe you can do it.”

“I appreciate your encouragement,” I said. “And I won’t forget—the importance of it.”

Sadie nodded. “Good. Now, let’s look at some of those books you brought.”

For the rest of my visit that day, Sadie and I looked through the books, admiring the whimsical work of Paul Klee, the quadrants of color by Mark Rothko, and the dreamy portraits of flowers and landscapes of Georgia O’Keefe.

Even after Sadie was transferred to hospice, I continued my visits, bringing with me more art books, the occasional almond croissant, and a delicate magenta orchid she could keep on her bedside table. Sadie’s upbeat spirit never waned, even as the cancer spread, even as her pain increased and she spent more hours asleep than awake. I was with her the day before she died. We sat quietly and admired the way the light spilled into the room from the window, how it bathed the orchid in an ethereal glow.

Disclosure Statement

The author(s) have no conflicts of interest to disclose.

Acknowledgments

Kathleen Louden, ELS, of Louden Health Communications performed a primary copy edit.

How to Cite this Article

Bair H. Not until I see my other doctor. Perm J 2020;24:19.033. DOI: https://doi.org/10.7812/TPP/19.033

Author Affiliations

1 Stanford University School of Medicine, CA

Corresponding Author

Henry Bair (hbair@stanford.edu)

Keywords: doctor-patient relationship, end-of-life care, narrative medicine, physician-patient communication

Reprint Permissions

The Permanente Journal welcomes requests for reprints and reproduction. Use of any and all published materials is copyrighted and protected.

SUBSCRIPTION

Journal subscriptions for The Permanente Journal are entered for the calendar year. Advance payment in US dollars is required.

CIRCULATION

27,000 print readers per quarter, 15,350 eTOC readers, and in 2018, 2 million page views of TPJ articles in PubMed from a broad international readership.

Indexing

Indexed in MEDLINE, PubMed Central, HINARI, EMBASE, EBSCO Academic Search Complete, rdrb, CrossRef, and SciVerse/Scopus.


                                             

 

 

ISSN 1552-5767 Copyright © 2019 thepermanentejournal.org.

All Rights Reserved.