Dr Rana Awdish saw first-hand the inability to see the patient behind the disease. Photo / Getty Images
Dr Rana Awdish saw first-hand the inability to see the patient behind the disease. Photo / Getty Images
This story originally appeared in February 2018
Dr Rana Awdish, an intensive care doctor in Detroit, was seven months pregnant when she lost her baby and nearly died herself as a result of catastrophic bleeding, caused by the rupture of a benign tumour.
In an extraordinary memoir, titled In Shock: What I Learned About Medicine's Inhumanity, she details her experiences as a patient in the health system in the US, offering a searing critique of the inability of medical staff — including herself — to see the patient behind the disease.
Dr Awdish now campaigns to improve communication in medicine, the Daily Mail reports.
The pain was excruciating and unsustainable. I knew instinctively that if pain of that magnitude continued, it would kill me.
It had otherwise been the kind of featureless day I would have easily forgotten, had it not ended so disastrously. I had a day off and planned to run some errands before dinner — first, taking my swollen feet shopping for new shoes.
I was into my seventh month of pregnancy and my body was bloated and heavy. As I entered the shoe warehouse, I realised I didn't remember driving there.
I wondered if my sleep deprivation was catching up with me. I'd just come off a demanding month working in the intensive care unit (ICU), spending every fourth night on-call — had I lapsed into a microsleep while driving? I touched my pregnant belly, almost as an apology. I knew I had to be more considerate of my body, given the baby.
I found an area that had a series of unattractive practical shoes. A woman repeated: "Excuse me, excuse me," with increasing irritation as she attempted to pass me in the aisle. I shook off the fog and realised I had been standing, blocking the aisle, staring at the shoes in my hands. I was meeting my friend Dana, who was also a doctor, for dinner. Perhaps she could help me brainstorm why I was feeling so bizarrely off.
At dinner a few hours later, I was suddenly overcome by a breathtaking wave of pain. The look on my face told Dana far more than the words.
She drove me the two blocks home. I saw the bicarbonate of soda on the counter when we walked in. It reminded me that my acid reflux had been terrible that morning, I'd taken the bicarbonate of soda to try to calm it naturally. I'd been attempting to avoid any medication that could interfere with the baby's health — even very innocuous antacids.
Dana and I walked to the living room, where my husband Randy found me 10 minutes later on the floor, kneeling, compressing a pillow tightly against my abdomen to reduce the pain. I eventually found that by lying horizontally across the arm of the sofa on my right side with my right hand on the floor, the pain would just slightly quell.
I had no way of knowing the pressure from the sofa was slowing the blood gushing from my liver, and that I had less than two hours before that blood loss would empty my arteries, veins, and heart entirely.
"When I lie like this, it's not so bad," I announced. Randy and Dana shook their heads, unimpressed, while debating if we should drive to the hospital or call an ambulance. An ambulance seemed the safer choice, but it meant I couldn't control which hospital I'd be taken to and I wanted very much to go to my own institution. I trusted us.
When I arrived at the labour and delivery unit, my vision tunnelled. My mind felt bubbly, as if it had gone without me on an effervescent New Year's Eve binge. I realised that I was experiencing shock.
Could I give them a urine sample? I imagined the co-ordination involved and shook my head. I was turned over to the obstetric nurses with the single-minded intention of evaluating the baby.
"The baby ... is fine," I grunted, breathless from pain, "but something ... is wrong ... with me. Please ... call surgery."
"I regained consciousness to discover I was wholly dependent on machines." Photo / 123rf
The doctor ordered morphine, which caught my attention. Oh my God, they are giving me morphine. We almost never give pregnant women heavy intravenous narcotics, understanding that it puts the baby at risk.
How had I gone from not wanting to take an over-the-counter antacid to getting intravenous morphine in just one day?
The trauma surgeon on-call was someone I had worked with. Dr G checked my lab results, winced, and began listing the possibilities. "Liver failure, perforated ulcer, ruptured appendix ..."
I heard and thought: No, I'm dying faster than any of those can kill you. This is worse.
By now I'd received 50 milligrams of morphine in total — enough narcotic to kill me had I been well, but due to the ferocity of my pain, my body barely acknowledged it.
My intuition that I was dying was validated by a second set of lab results: I'd lost nearly my entire blood volume somewhere in my abdomen. This served only to amplify concern for the baby, and they wheeled an ultrasound machine to my bedside.
"Bear with me," the obstetric resident [a junior doctor] warned, his foot tangling in the cord. "I'm not great at these yet."
He didn't need to be. From the first grainy images I could see, the heart was still and pulseless.
"There's no heartbeat." The words cascaded out of me on a torrent of agonised breath.
"Can you show me where you see that?" he asked. I shuddered in a shock of pain. As my breath caught, I stared at him, incredulous. Could I show him how to interpret the ultrasound images of my dead baby?
I realised his perspective in that moment was aligned squarely on himself. His detachment reveals an unsettling, largely unspoken reality.
As doctors, we aren't trained to see our patients. We're trained to see pathology. We're taught to forage with scalpels and forceps for a diagnosis. We excavate in delicate, deliberate layers, test by test, attempting to unearth disease.
The true relationship is forged between the doctor and the disease. This bond is disclosed when we re-encounter these diseases: we greet them respectfully as the worthy adversaries they are. The patients are at risk of becoming an accessory to the whole affair.
As his question echoed, I discerned genuine curiosity and I realised, with an uncomfortable tug of recognition, that indeed I was not a person to him, but a case. And an interesting case at that.
I affixed my eyes on to his, willing him to see me. I instinctively felt that if he didn't see me, if he didn't connect with me, he might not care enough to do what it would take to help me to survive.
The baby, having declared her own distress, meant the surgery came easily now, briskly even.
"Medicine has a long history of presupposing what is right for our patients, though it is changing." Photo / 123rf
As they began sedating me, I heard the anaesthetist's voice: "We're losing her."
I was drawn back into myself, from failing consciousness, by those words. Are they losing me? I attempted to survey the situation. "We're losing her."
I struggled to maintain consciousness, trying to surface against a submersive force, a weighted pull into an obliterative darkness.
I regained consciousness to discover I was wholly dependent on machines. My eyes darted around the room, imploring those present to explain what had happened.
There were no mirrors in the ICU. Instead, I gauged my appearance by the reactions of the people entering my room. Physician colleagues who were masters of the reassuring, permanent half-smile, gasped and cried instead. At one point I awoke to the voice of my childhood priest. As an ICU physician, I had only ever seen priests enter patient rooms when last rites were being administered.
I overheard myself being presented by the surgical resident in the hallway for the morning rounds.
"Thirty-three-year-old female with HELLP syndrome, post-op day four, status post-crash C-section for foetal demise. Intraoperative observation of a large subcapsular haematoma [a solid mass of clotted blood near the liver]."
The acronym he used, HELLP, stood for hemolysis, elevated liver enzymes, and low platelets, a poorly understood, often fatal condition that affects less than 1 per cent of pregnant women. A condition in which the blood is shredded into useless shards, the liver fails and women bleed to death.
In addition to understanding they thought I was suffering from HELLP, I also learned that I had bled into the space around my liver. Until that moment, I had no idea what had caused the excruciating pain. The diagnosis was disproven nine months later, when a tumour was surreptitiously identified on a CT scan, but for now it would do.
"She's been trying to die on us," the resident continued.
Um, no, I thought, becoming angry. I was trying desperately not to die. By blaming me, I felt he was positing me as an adversary. If my care team didn't believe in me, what hope did I have?
Then I cringed with the discomfort of an uncomfortable memory. I had used that phrase often and thoughtlessly in my training. Oh my God, we all said it all the time.
One day, a woman in scrubs perched casually on the window ledge. She identified herself as a nurse from the neonatal ICU team who had been in the operating room the night of my "delivery". She had ostensibly come to provide me with closure.
I recalled the last time I had seen the baby, with her motionless heart on the monitor.
"No," I replied flatly.
"Well, I think that's really sad," she stated, visibly disappointed.
I was surprised: 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 didn't believe that I needed to see the baby to be able to grieve.
"Well, you won't get another chance." And as if to drive home her point, she added: "You know, I don't want to be too graphic, but after a few days, their skin, it starts to ... break down, so you won't be able to change your mind later."
She looked at me with an expression of pity. "A baby deserves to be held by her mother at least once." I stared back. 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 stood to gain nothing from this imagined interaction with its mother.
In fact, Randy had held the baby that first night. My mum had held the baby while waiting to hear if I would survive. Hearing about their time with the baby was all I needed for closure. I didn't need to hear the bit about her skin.
But the nurse 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. But there was no room in her plan for my needs or values.
Dr Rana Awdish learned first-hand the inability of medical staff to see the patient before the disease. Photo / Daily Mail
Medicine has a long history of presupposing what is right for our patients, though it is changing. By the time I reached medical school, we were taught that we possessed knowledge that would allow us to delineate the possible paths for our patients, and that ultimately the choice was theirs to make.
But implicit in this was that there remained one 'best' choice, and if the patient didn't select that choice, perhaps you hadn't done the best possible job selling it.
We certainly weren't trained to listen — we were trained to ask questions that steered people to a destination. 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?"
"It depends. If I rest it goes away quickly, but if I don't —"
"Seconds or minutes?"
"Well, a few minutes sometimes."
All so we could report back to our consultant in a standardised manner, that "the patient describes a chest pressure that lasts several minutes and is alleviated by rest". Bland data, devoid of context, quickly obtained.
What else might we learn from an uninterrupted narrative, rich with context?
"I've been having this feeling in my chest. I've been doing more lately, since my husband's Parkinson's got worse.
"I've had to help him with so many more of his tasks, like showering, and he's heavy. When I've been bearing his weight, I've felt this pressure in my chest and it scares me, because if something happens to me, what will happen to him? I've nearly dropped him out of fear I'm having a heart attack."
To listen to our patients with a generous ear requires a willingness to relinquish control of the narrative, to abandon our assumptions to make room for truth.
Six months later, I went back to work. It wasn't lost on me that my true education had begun the moment I'd become ill. Standing outside the ICU that first day, I silently hoped for the strength and clarity of thought to unite my experiences as a patient and a physician into a cohesive whole.
The resident began presenting his first patient.
"The patient is a 34-year-old woman, postpartum day seven, transferred from an outside hospital with liver failure and a presumed diagnosis of HELLP syndrome."
I felt incredulous; it hardly seemed possible that this could happen on my first day back.
I studied her through the window to the room as he described her liver and kidney failure. I looked back at the resident as he reported a torrent of lab values, imaging studies and eventually his assessment and plan.
It seemed to me there was something missing in his very comprehensive presentation.
I began asking questions, trying to identify the gap. "So, how long after she delivered the baby did she begin to deteriorate?"
"That same day."
This was a woman who had one single day with her baby and now was perilously close to death.
What was missing, I realised, was any acknowledgment of the absolute shattering horror of this particular sequence of events. They didn't see her a person. She was a case to them.
"What did she name the baby?" I asked. The team stared at me blankly. "It seems like something we should know, doesn't it?" I asked curtly. I wanted them to see her as the mother of a baby whose name they knew.
"The baby's name is Charlotte," her nurse answered.
"Thank you." I paused.
I'm sure it seemed to my residents that each time I came to rounds, I brought a new idiosyncratic habit with me. I felt them eye me quizzically as I leaned down to speak into an unconscious patient's ear: "You're doing much better. You have pneumonia, but the antibiotics are working."
"I believe he can hear us," I'd explain. "And if it was you, wouldn't you want someone to explain what was happening?" They would shrug, unable to imagine such a thing.
Another patient, also unable to communicate while attached to the ventilator but more alert, had hands so disfigured by arthritis she couldn't write.
I located her cell phone and handed it to her. I programmed my number into her mobile and told her: "You can ask us anything you want." Her eyes began to tear as she started to type with her thumbs, the only joint not deformed by contractures.
"Can you call my son?" she asked. Then: "What's wrong with me?"
"That was amazing," the residents exclaimed as we exited the room.
It may have bordered on human, but it was far from amazing.
Sometimes the team regressed into old behaviours. I was observing a resident placing a large intravenous line in a very ill and unconscious pregnant patient.
"Do we know who is going to get the baby, when she dies?" the resident asked, with a casualness that suggested he was almost uninterested in the answer.
I didn't know then why what I heard made me so angry. I only knew that when I was dying, the very last thing I heard was: "She's circling the drain here. We're losing her."
And that could have been the last thing I ever heard.
Adapted from In Shock: What I Learned About Medicine's Inhumanity by Dr Rana Awdish, published by Bantam Press. The book is also available in New Zealand here and here .
