In Shock Page 5

  I explained to my mother that I might require dialysis, and she nodded, having mastered the quiet art of accepting such setbacks. I wondered if she’d ever seen someone suspended permanently in limbo. I felt plainly that death would be preferable. I doubted my mother would agree. I wondered if Randy would be more practical.

  I felt obligated to warn him what he could be in for. On our one-year wedding anniversary, I had him bring in a card I’d purchased “before” and asked a nurse to help me add an inscription. We left the prewritten nonsense intact, but in the margins explained that most marriages don’t survive the death of a child and wished him luck. My nurse reviewed the card and frowned at me. I shrugged and took it from her. I knew I was not my most romantic self, but I believed it stated the situation perfectly. And it had value—it was a warning fashioned out of love.

  I was pointing him guiltlessly to the door that led out of the ICU, out of the world of chronic care facilities and relationships that deteriorated from husband and wife to caretaker and invalid. I knew love and pain and sorrow could keep us together, but it could also reduce his life to waste.

  I handed it to him and his face melted, believing it to be incredibly sweet that I wanted to commemorate our anniversary despite the circumstances. He opened the envelope and studied the card silently. He’d spent every night resting in a chair at my bedside. He was so profoundly sleep-deprived that the radiology techs eventually accepted that they couldn’t wake him when they came to do my morning chest X-ray. My attempts at hitting him with the hospital remote didn’t wake him. So in the end they resorted to throwing a leaded apron on him and letting him sleep through. His blind devotion made mapping his exit strategy my responsibility.

  “The wetness is drool,” I added, trying to make a point. I was betting that body fluids were the key to disgusting him away.

  He smiled, unwavering. “We’re not most people. We can get through anything.”

  Have it your way, I thought. But don’t say I didn’t warn you because it’s not going to be pretty.

  He was never repulsed by anything that happened to my body. In fact, the things I assumed would repulse him only served to increase his compassion toward me. My bruised and discolored body was proof to him of what I had endured to stay with him. The line of crusted staples traversing my abdomen were a testament to my ability to endure pain. I watched him move past compassion into deference. He honored my body and spirit even as it failed miserably. He was awed by its capacity to heal, albeit in its own time frame. He marveled at my strength and allowed me to see myself from his position of compassion and awe. Regardless of how I looked from the outside, or how weak and helpless I felt, he saw through to a core of fiery, molten strength. When I saw myself reflected back the way he saw me, I wanted to be more like that person. That person was resilient and was clearly going to recover.

  * * *

  There was a continual stream of doctors and nurses in and out of my room in those days. Often I would recognize them, from what felt by that point like a past life, but there were new faces as well. The surgery resident whose presentation I had overheard came in one morning to check on me after I had developed worsening kidney failure, which I blamed on the poorly timed Lasix. He was ambitious but soft around the edges. He wanted to become a plastic surgeon, an ultracompetitive field within the already competitive field of surgery. He worked hard to ensure his attendings viewed him favorably and hoped, against any discouragement, that they recognized his skill and dedication. He needed their support to apply for the few, coveted plastic surgery fellowship spots available each year. I picked up what was closest to me, a small plastic device meant to encourage me to take deep breaths so my lungs would stay optimally inflated, and threw it at him. He ducked, though he needn’t have: I had terrible aim in the best of circumstances. With double vision and muscle weakness I had no chance of hitting him.

  “How could you have thought giving me Lasix was a good idea?” I asked him.

  “It wasn’t my call.” He attempted to skirt the blame and projectiles I was directing at him.

  “You wrote the order,” I reminded him, knowing the structure of rounds well enough to know that even if the attending was the one to state the plan, the resident wrote the order.

  “I know I did, he told me to, but I knew it was a bad idea. I didn’t want to,” he explained.

  I wanted to ask why he didn’t say something if he had disagreed, but I knew the answer. It was the structure of the rounding team that had stopped him. Rounding teams usually consist of a medical student; an intern or two who are just out of medical school and serve as the workhorses for the more senior residents; the residents, maybe as many as five or six years out of medical school, depending on the length of the training program. There might be a fellow on the team, a sort of super-resident who though still in training has completed residency and has additionally declared a sub-specialty such as cardiothoracic surgery. In my case, I had completed a combined three-year fellowship in pulmonary and critical care medicine after my three years of internal medicine residency. All of these trainees are supervised by one attending physician. The attending is there to direct and supervise the care, teach on relevant topics, and grade each member of the team on his or her performance. These team-based rotations usually last a month, during which time “good” residents aim to learn the relevant content, demonstrate their knowledge and impress their attending physician.

  I knew that though I believed the resident had a say in the Lasix order, ultimately it went through uncontested because the resident was outranked. When discussing medical errors, the concept is referred to as the authority gradient, and it is essentially a barrier to communication due to a differential in status. He perceived a gradient in which he did not feel he could question the judgment of his attending surgeon, because of their roles and the excessively hierarchical rounding environment. And because in this case, the rounding attending wielded influence over even the resident’s potential career advancement, the gradient was especially intrusive.

  “It’s OK,” I said, my anger deflating. “I believe you,” I added, understanding the position he had found himself in.

  I thought about the training system we were each a part of. A system that had evolved over decades with norms, patterns and expectations that were so pervasive that residents in geographically diverse programs had nearly identical experiences. And though the expectations were never explicitly articulated, you just knew that there were some things you couldn’t say and couldn’t do. You knew it by watching how everyone around you handled similar situations, and how behavior that was deviant was dealt with. It was a training system that required that we defer to authority. The value of experience and position were impressed upon us, value that was meant to supersede even our own judgment. I wondered about the reliability of a system that was set up to ensure obedience rather than an honest exchange of information. Was it possible we’d been socialized to allow medical error rather than prevent it? Had we somehow inadvertently set up a system that obstructed good communication and allowed errors to occur unchecked?

  I knew in that moment my kidneys had been set up to fail.

  * * *

  One day a woman in scrubs came in and perched herself casually on the window ledge. I couldn’t see her clearly, both because of the stroke, and the way the light from the window shrouded her face in shadow. She identified herself as a nurse from the neonatal ICU team who had been in the operating room the night of my “delivery.” The word delivery seemed a misnomer, as it was so far removed from my experience. Initially I thought she had the wrong patient. But then she began describing the events from her perspective, and I understood—she’d indeed been on the receiving end of a delivery of a baby and wanted to provide me with a firsthand account. She had ostensibly come to provide me with closure.

  The baby, she told me, was evacuated from my uterus still encased within the amniotic sac, and the placenta fully separated. A complete abruption, which has
the distinction of being the worst-possible scenario. The connotation was that at some indeterminate point earlier in the evening, the placenta had detached from the uterine wall, depriving the baby entirely of any blood supply. The baby was delivered already dead. They attempted to place a breathing tube, and were successful, which she appeared to be proud of, but the baby didn’t respond to their efforts. The baby weighed less than a pound. She spoke with precision and an intentional gravity. She reminded me of the military officers that would arrive on the doorsteps of widows.

  “Do you want to see the baby?”

  I recalled the last time I had seen the baby, with her motionless heart on the monitor in the triage area.

  Did I want to see the baby?

  “No,” I replied flatly.

  “Well, I think that’s really sad,” she stated, visibly disappointed.

  I was surprised by her reaction. It hadn’t occurred to me that there was a right answer.

  I attempted to explain that I knew the baby had died prior to entering the operating room. I also felt that as a physician, I had some working concept of death, and I didn’t believe that I needed to see the baby to be able to grieve the loss. I stopped there, not understanding why I even felt it necessary to justify this choice to a stranger. It struck me as unnecessarily cruel to ask me to hold a baby that had been dead in my mind for days already.

  “Well, you won’t get another chance.”

  Interesting tactic, I thought, resorting to threats in an attempt to provide her version of compassionate closure on a failed pregnancy. As if to further drive home her point, she added, “You know, I don’t want to be too graphic, but after a few days, their skin, it’s very fragile and it starts to … um, break down, so you won’t be able to change your mind later.”

  I was rendered speechless by her apparent need to provide a description.

  I wasn’t going to change my mind, I assured her, wishing she’d leave.

  She looked at me with an expression of pity, the way one might look at a child who has broken his favorite toy in a fit of spite. “A baby deserves to be held by her mother at least once.”

  I stared back at her, silently imploring her to leave. I thought I would have done quite well to have avoided this whole encounter entirely. I agree, in principle, that a baby should have the experience of being held by her mother. But in my mind, that baby would ideally be alive. This baby was not alive. This baby stood to gain nothing from this imagined interaction with its mother. I felt as if she were asking me to submit to some act of self-abuse that she bizarrely construed as constructive. As if she were asking me to bare a wound she had neither the intention nor power to heal.

  Randy had held the baby that first night. His wedding band would have fit around her leg, he said. Or maybe it did fit around her leg. I don’t know if the image I have of him sliding his ring up her thigh was manufactured from his telling of it, or if he actually slid off his wedding band and assessed her impossibly small being in that way. My mom had held the baby while waiting to hear if I would survive. I thought we’d been through enough. Hearing about their time with the baby in the sad waiting room was really all I needed to hear for closure. I didn’t need to hear the bit about her skin.

  Ironically, in her attempt to provide me with closure, all she had left me with was an image of my decomposing baby.

  I know that wasn’t her intention. I believe she meant well. I believe that she came into that room with a plan. She genuinely thought it was imperative that I hold the baby. She believed she was intervening on behalf of some future version of me, a person who would regret a missed opportunity. She had been taught, and clearly held as dogma, that it was important for the mother to hold the baby at any cost. In her desire to help, she needed me to conform, to accept her predetermined plan. But there was no room in her plan for my needs or values. Presupposing what was right for me was ultimately her mistake.

  Medicine has a long history of presupposing what is right for our patients, though it is changing. The paradigm had already shifted from the paternalistic model of doctor-knows-best to one of shared decision making by the time I reached medical school. But the new construct still weighted the doctor’s recommendations heavily. As young physicians we were taught that we possessed knowledge that would allow us to delineate the possible paths for our patient, and that ultimately the choice was theirs to make. Implicit in this was that there still remained one “best” choice, and if the patient didn’t select that choice, perhaps you hadn’t done the best possible job selling them on it. It’s impossible to be agenda-less when one believes one knows what’s best.

  We weren’t trained to listen.

  We were trained to ask questions that steered people to a destination. We were not wise enough to know that questions generate answers that are formulated in their likeness. We were trained instead to use the questions as fences, meant to constrain the answers and eventually corral them into manageable pens. In turn we were given answers that fit neatly into checkboxes.

  “I’ve been having this feeling in my chest,” the patient begins.

  “Would you describe the pain as a pressure or a stabbing sensation?”

  “I guess it’s more of a pressure…”

  “And how long does it last?”

  “It depends. If I rest it goes away quickly, but if I don’t—”

  “Seconds or minutes?”

  “Well, a few minutes sometimes.”

  All so that we could report back to our attendings, in a standardized manner, that “the patient describes a chest pressure that lasts several minutes and is alleviated by rest.” Bland data, entirely devoid of context, quickly obtained. We were cautioned against generous, open questions that were posed from a position of true curiosity. We were trained to value efficiency over cultivating a relationship through trust and disclosure. We weren’t trained to value the patient’s story.

  What else might we learn from an uninterrupted narrative, rich with context? “I’ve been having this feeling in my chest. I have been doing more lately, since my husband’s Parkinson’s disease has gotten worse. He just can’t do what he used to. I’ve had to help him with so many more of his tasks, like showering and getting dressed or out of the car, and he’s just heavy. When I’ve been bearing his body weight I start to feel this pressure in my chest, and it scares me, because if something happens to me, what will happen to him? We don’t have children. I’ve nearly dropped him out of fear I’m having a heart attack.”

  To listen to our patients with a generous ear does require a willingness to relinquish control of the narrative. And like all loss of control, there is an element of risk involved. And risk carries with it an inherent degree of vulnerability. Our questions allow for the possibility that we do not already know the answers. By not dominating the flow of information, we allow the actual history to emerge. This kind of humility in listening requires that we abandon our assumptions to make room for truth. A truth that could be messier, but that will allow us to see the patient in the context of their values and their life. It requires that we value the question in a culture that values answers.

  The real secret, though, is that the honesty elicited from genuine, reflective questions is also a reprieve for the physician. Imagine you are tasked with whether to recommend chemotherapy or radiation or a plan for hospice care to a newly diagnosed cancer patient. You may know the risks and benefits of each path, the side effects and the complications that lay ahead. You may know that the chemo will be terribly difficult to tolerate and may add three months of life in the best of circumstances. You may know that radiation will be far easier to withstand, and confer an added month at most. You may know that the death will be of respiratory failure, and a slow torture unless managed expectantly. You may feel genuinely conflicted, unsure what to recommend, given what you know. It’s very easy as a physician to default to that practical knowledge base and begin with a cognitive question: “I know this is a difficult diagnosis, so do you want to
discuss options for treatment that will extend survival?” Then every patient, regardless of what they value, will hear the odds of survival are better with chemo.

  If the discussion instead begins with, “I’m so sorry that this is the diagnosis, and I know we’ve discussed the prognosis already, and it’s difficult to face. Would it be alright if we talk a bit about how you envision spending your time, from now until whenever the end may be?” One patient may reply, “I want my family to know that I did everything possible to beat this cancer. If there is a clinical trial that gives me a one percent chance of another day, sign me up, I don’t care how rough it is.” Another may say, “I watched my mother die of cancer. The treatment made her so sick, I often wished she had just let go. It’s important to me to be calm and at peace, and not have my family see me suffer.” With the right question, each patient can be given a recommendation that fits their values. This way of questioning, this recommendation built on empathy and a patient-centered narrative, has the potential to heal everyone involved.

  * * *

  In lieu of the baby, we left the hospital with a small box containing three items: a black-and-white photograph of the impossibly small translucent baby posed beside a miniature stuffed teddy bear; the teddy bear itself, small enough to be a Christmas ornament; and the slightest smudge of a footprint. An anthology of her nonexistence offered as evidence of her almost existence. The bear offered something tangible that one could hold, if one wanted to appreciate the impossible smallness of our premature baby.

  Two years later, sitting in the neonatal ICU with my premature son on a ventilator in the incubator in front of me, his nurse said, “You know, I was there that first night, with your first baby.”