In Shock Page 24

  My presentation was changing in my mind as I gave it. I should have perhaps expected that; I knew that teaching was inherently reciprocal. We learn early on that we gain as much wisdom from our students as they do from us. We learn as we prepare lectures, as we contemplate unexpected questions and embrace new angles on old ideas. We confront our own biases, laid bare by the face of innocence. To teach something, you first have to truly master it yourself, and that requires a kind of self-discovery, an immersion that ignites the first sparks of knowledge before we are ever in front of a student. I knew that to be true, and yet I wasn’t expecting to learn anything as I delivered my prepared lecture that day. I believed I had an experience and point of view that I wanted to impart to the audience. In doing so, I found the audience had the answer I didn’t know I was looking for. They allowed me to look into the darkness of the auditorium and see. See that the darkness in the end would bring forth the light.

  My presentation had nothing to do with sepsis or hematomas. It never did. It was about uniting the patient story with medical knowledge and a larger, supportive community so that together we could heal the world we had proximity to. Because although the healing potential of medical knowledge is remarkable, it cannot function in a vacuum.

  I walked off the stage to a line of people waiting to tell me I was brave. I didn’t feel brave. I felt tentative and scared, wondering if I would be understood. I felt like an ambassador sent from some faraway planet who wanted to explain what it looked like in the places they would never see, but not knowing if we had a common enough language for me to express myself effectively.

  In the hallways after the lecture, I became the recipient of the stories of others. Notes were jotted down and passed to me as if secrets: Here, you can read this later, I just want you to know you aren’t alone.

  Three years ago, my mom was diagnosed with an aggressive Stage IV breast cancer. She had metastases everywhere, her liver and spine were riddled. And she was scared, she felt she didn’t know what questions to ask, so I went with her. Her son the doctor was there to help. And I listened during the visit, I didn’t want to be pushy, you know? Overbearing physicians and all of that. And I asked him, “So what are we looking at here? What’s the prognosis?” And the guy looked at me and said, “Seriously? You’re a doctor, you know how this goes. You really want me to spell it out for you?” And my mom just started crying. She’s been dead for a year, and I swear to God, I can’t think of her without hearing what that doctor said.

  Messages filled my e-mail inbox. The subject line usually said, “Your talk” or “Sepsis Day.” One read,

  When I had a heart attack last year, the cardiologist doing the catheterization told my wife, “I found the blockage in his artery. We call it the widow-maker.” As an internist I had probably heard that phrase a thousand times before, and I never thought much of it. Like, ha ha, yeah it usually affects young-ish guys and it usually kills them, so we call it the widow-maker. But saying that to my wife, telling her in that way, it just terrified her, you know? In some ways that sentence scarred her more than the heart attack itself. She hasn’t let me go golfing since.

  An elderly colleague stopped me in the hallway one day and told me:

  I didn’t really tell anyone about this, but I was in the emergency department a few weeks ago, with an intestinal blockage. It was pretty painful and I was scared … I’m older now, you know. No one is surprised when you die at my age. And my wife doesn’t drive so I was there alone. And this doctor sat down next to me, I’m sure he was busy, but he sat down next to me and he held my hand. And it comforted me more than I can explain. I was so moved by that small act. But you know what? It also made me think, in all these years of being a doctor, why had I never just sat down and held someone’s hand? It could have made all the difference for someone, but I just didn’t know. Until that moment, I didn’t see the value. I didn’t think that was my job.

  I always printed the e-mails rather than read them on the screen. If someone told me their story out loud, I jotted it down later in a journal. I saved the notes. There was something powerful in that act of making the suffering visible. Maybe I believed that if it was visible, if it was made physically tangible, it could better be known. I could be a better witness to it.

  Other stories emerged, from colleagues who understood where they had failed. Stories that emboldened them to want to change the system. Stories rooted in shame that they couldn’t find a place for. Stories that intersected with my own.

  One described an encounter in the ICU with the father of a twelve-year-old girl who had had an asthma attack and required life-support. The physician knew that the girl was brain-dead, that there was no hope of a functional recovery, and stood before the crying father, speechless.

  I was looking at him, and I just saw myself, you know? My daughter has asthma and her mom and I had just gotten divorced. And this girl had been riding her bike when she had an attack and the dad didn’t know. He just thought she was out playing. By the time he got there it was too late. He told me his ex-wife was on her way, and he just needed to know how bad it was. And as he asked me that, I was thinking that this was the worst thing I could imagine a father going through. I saw myself in him and it really shook me up. So, all I could manage was, “It’s as bad as it gets.” And the guy nodded, and he kissed her and he left. He just walked out of the ICU. I got the sense he didn’t want to be there when his ex-wife showed up. So, I found out later from his ex-wife that he went home and killed himself. He shot himself in the head. I’ve never talked about this before, but I know it’s my fault. If I had known what to say, or if I had been able to stop thinking of myself for a minute and be there for him, maybe he would still be alive. I couldn’t save his daughter, but he didn’t have to die. That’s on me.

  It struck me as these submerged stories resurfaced that in the same way physicians had denied the primacy of the patient voice, medicine had also silenced physicians. We’d been trained to believe that the burdens we carried, the suffering we witnessed was meant to be borne in silence. We were further taught to establish clinical distance, to don white coats that declared we were on the side of health. It was an intentional delineation of ourselves as separate, and therefore safe. We made this declaration not only to our patients, but also to ourselves. Because in order to practice medicine we needed to see ourselves as somehow separate and therefore not susceptible. If we believed we were the same as our patients, with the same propensity for illness, we would be forced to confront our own mortality. It’s a difficult thing to know that much of the suffering we witness will in some form touch us as well. All of the illness and dependency and death. But it seemed to me in retrospect that the anchors intended to moor us had actually pulled us under.

  The notes seemed to acknowledge that we were, in fact, all the same. Maybe the mechanism of injury was different, but we were all facing the same abyss. And taken together, our isolated voices, the shared disclosures and e-mails, the voices of the patients, they were actually able to amplify each other, even in the darkness. And they were all begging for change.

  One card appeared in my hospital mailbox and transported me immediately back to the ICU, to the patient who had asked each person to write a message of hope for her wall. I remembered clearly standing with the team as we rounded on the patient who had been waiting months for a lung transplant. The card said only,

  Dr. Awdish, I want you to know that I filled out the index card. I didn’t do it the day you told me to, or the day after. I don’t know why but I just couldn’t. I’m sorry. But when she had her transplant, when I saw her up and walking again, I did. I couldn’t bring myself to give it to her. I was too embarrassed and I didn’t think she would remember me anyway. So I wanted you to have it. It’s kind of written for both of you anyway.

  The 3x5 index card, which was enclosed, said simply, “Thank you for teaching me that there is always room for hope.”

  I stood in my office staring at it as the words bec
ame obscured by my tears.

  We were the light needed to heal each other.

  People get shattered in many ways, and they heal through different means as well. Each of my wounds had healed differently. I have one scar that is a pale, thin, perfectly straight line. It is eight inches long and runs from just under my breastbone to my navel. It recalls a wound intentionally created with a surgeon’s scalpel, the one they made to remove half of my diseased liver. The edges the scalpel produced were sharp and clean, and could be brought together neatly. It healed well. In medicine we call it “healing by primary intention.”

  Some wounds are too large and can’t be closed that way. Wounds created by trauma don’t have sharp clean edges. The deep craters of tissue loss have wide perimeters that can’t be pulled neatly together. These injuries heal slowly as new tissue is generated to fill the space, layer by layer. These sorts of injuries leave behind larger, rougher scars. Scars befitting a city decimated by civil war. This healing, which we call “healing by secondary intention,” is more like a mourning process than a surgery. It requires a rallying of resources, both internal and external. The significance of the loss is acknowledged and announced, and a support system arrives to attempt to fill the vacancy. And though everyone present feels deeply inadequate as an individual, together they are able to provide the necessary support. They form a network that can support regrowth into the newly empty space. It is a rebuilding rather than a reclaiming.

  All great losses heal this way.

  We would heal through secondary intention. The people behind those notes and e-mails, and those in the hallways, would band together and fill the empty spaces. They became our allies and advocates. We enlisted patients and their families, and embedded their voice in every effort. We learned together how to honor our respective brokenness, the vastness of the wound and the primacy of the patient’s perspective. We work each day to add another layer, to make hope visible, to make the space whole again.

  It’s a very different course than the one I set out on all those years ago when I believed healing to be clean, academic and straightforward. It’s far more humble, and honest, informed by an ocean’s weight of suffering. And despite a sense of forward progress, I know the strength of the tide and the constant threat of the undertow. We’ve all felt it now. And though we are building the ship as we sail it, it is finally being built. Because no one else should have to drown.

  WE CAN DO BETTER—COMMUNICATION TIPS

  Conversations that occur in doctors’ offices or at a hospital bedside are some of the most critical any of us will ever have. The effectiveness of those discussions has a direct, measurable impact on individual patient health outcomes. Something as simple as providing quality information about a new medication has the ability to influence whether patients actually take the drug. It’s well understood that activated, engaged patients are more likely to participate in health-promoting activities. Yet both doctors and patients lack the tools necessary to ensure that the needs of each side are met. We even lack a common language. Physicians spend years learning to translate common symptoms into archaic terminology only to be tasked with explaining medical issues without using jargon. We can do better.

  These encounters are too important for us to passively allow them to simply happen to us. Patients and physicians alike have to take ownership and be deliberate partners in their construction. From before the visit to long after, there are a number of steps we can take to ensure we have given ourselves the best possible chance of success.

  BEFORE THE ENCOUNTER: PHYSICIAN

  Arrive present

  The emotional state of the physician impacts everyone in the room. While it is important to take the temperature of the room, it is equally important to know what emotions you are bringing in with you. Think of yourself as a thermostat. You have the ability to return the temperature of the room to neutral. Your emotions should never add to the heat; they should only equilibrate the room.

  Check in

  Take a moment to check in with yourself—are you hungry, thirsty, tired, or otherwise distracted? Given the demands on physicians, it is likely that you are all of the above. What can you do to tend to yourself in a minute or less that will help you be more present for the encounter? A well-timed snack, a peek at a picture that reminds you of what you are looking forward to at home later, or even just a deep, cleansing breath can center and calm your nervous system. It can deactivate the flight-or-flight mode physicians often find themselves in and allow you to focus on the patient. Allow yourself the gift of being able to truly see.

  Know the history

  There is little that is more influential in building trust than truly knowing the patient’s history. An elderly patient who has just been discharged from the ICU undoubtedly requires more care coordination and an in-depth knowledge of the events of the hospitalization, but that same approach is just as beneficial for a routine outpatient. Even a few moments spent reviewing a patient’s list of medications or your last office notes will help to set a positive tone for the visit and demonstrate your commitment to properly coordinating their care.

  BEFORE THE ENCOUNTER: PATIENT

  Bring support

  Consider bringing someone with you as an extra pair of ears for especially high-stakes appointments. Give them a task beforehand, and be explicit about your needs or expectations: “It will help me if you write down as much as possible about what the doctor says so I can read it later if I forget.” Or, “I need you to be sure I remember to ask this one particular question, so if I don’t, please ask for me.”

  Make a list

  Ensure you make the most of your visit by writing down your questions, concerns, and any of the issues you hope to be addressed well before your visit. Remember in school when you were taught to brainstorm—not to filter your thoughts but just write? Do that, then sit back and look at what you’ve written. What stands out to you as important? What questions can be asked of other members of the care team, perhaps the nurse? What are the things you might be afraid to ask? Reflect on your answers and then start a new list, prioritizing each item, and determine which items must be addressed in order to feel the visit was effective.

  Keep a journal of your symptoms

  If one of the items is a new symptom, start a journal of your symptoms. In order to determine the most likely cause of your symptoms, your doctor will ask a series of questions that is part of the patient assessment tool OPQRST. Structure your journal with these questions in mind:

  Onset: When did you first notice the symptom? Your doctor is listening with ears attuned to acuity, because a symptom that began ten years ago is far less likely to harm you than one that came on suddenly last week. Be honest with yourself and your doctor. If it started six months ago, but you were afraid it signified something serious or embarrassing and didn’t mention it before, admit that. It will help your physician to know that this is difficult for you to discuss.

  Provocative Factors: What were you doing when the symptom started? Be specific. Sometimes this tells us everything. Someone who never has chest pain at rest but always has chest pain while climbing stairs may have a very serious blockage in the arteries that supply the heart muscle. Similarly, if the pain in your shoulder began when you were playing softball, it tells your physician something about the likelihood of injury.

  Quality: Can you describe how the symptom felt? Symptoms are often the most difficult to describe, so think of defining characteristics. If you are experiencing pain, is it sharp or dull? More of a pressure or a burning sensation? If you had to make someone else imagine what it felt like, what words would you use?

  Radiation: Does the symptom ever change or move within your body? This is something that is easier to figure out outside the doctor’s office, when it’s quieter and you can notice details. Sometimes we are so distracted by the primary symptom that we fail to notice there is more to it. Has the burning in the center of your stomach moved up to your throat? Maybe the dull ache in your
right side sometimes travels to the middle of your back. Have you noticed a change with certain positions? Is it better or worse when you lie down? Pay attention to your body, as these are clues that can help your doctor tremendously.

  Severity: When is the symptom at its absolute worst, and how severe is it? This may vary and change over time, so it’s good to think of the range of severity. If you find it hard to quantify, think of the following questions. How does it impact your life? What does it stop you from doing?

  Temporal Factors: Does anything make it better? Say, avoiding spicy foods? Taking an over-the-counter allergy pill? What have you already tried? Does anything make it worse? What makes it go away completely? Does it ever go away completely? Can you associate it in time with anything? Meals? Time of day? Does it ever wake you up at night? Look for patterns. If you notice one, write it down and share it with your physician.

  BEGINNING THE VISIT

  Agenda setting: Physician

  We each have defined goals for patient visits. Many are based on best practices and guidelines that are designed to improve the relative health of large populations of people. It can be easy to fall into believing that we know what the goal of an encounter is without negotiating the agenda with the patient. But to engage any patient in health outcomes, we first must find out what is important to the patient. We can then use this data to help create an agenda for the encounter. Begin with an open-ended question and then listen to the patient’s answer. My usual greeting ties this all in: “I was reviewing your records in preparation for today’s appointment, and I have a few things I am hoping to discuss, but first I’d like to hear what is on your mind. What brought you in today?” It can feel like a loss of control, as if the patient’s stream of concerns will never end, but studies show most patients will keep their response to less than two minutes if left uninterrupted.