On the day I was supposed to start my intensive care unit rotation as a fourth-year medical student, I walked into an ICU 3,000 miles away as a visitor.
My dad, who has been living with cancer since my first year of medical school, was recovering from emergency surgery for an infection. Awake but unable to speak because of a plastic tube in his airway, he grabbed a piece of paper and scribbled, “Glad you’re here.” Unable to find my own voice, I nodded in agreement.
In the weeks that followed, I was reintroduced to the health care system I thought I already knew. Despite knowing how much compassionate and endless effort doctors, nurses, and other clinicians put into patient care, I was humbled by seeing my father and family struggle to understand the care he needed, and by how much effort it took on our part to ensure he received it.
From inside my dad’s hospital room, I witnessed parts of hospitalization I had never seen up close. Instead of placing orders for a patient’s antibiotics every six hours through a computer, I saw how exhausted my dad looked after his antibiotic drip finished in the middle of the night and the machine’s alarm went off next to his ear. Instead of calling consults for my patients, I twiddled my thumbs waiting for wound care nurses, plastic surgeons, infectious disease specialists, and others to stop by, seemingly right when my dad found a moment to shut his eyes.
In the mornings I’d peer through the narrow window to the hallway and watch the medical student present my dad’s case to the care team. I felt a pang of exclusion as this scene played out beyond earshot — I preferred being cast as the medical student, not as the relative at bedside. The team talked shop about labs and medications for 10 minutes before flooding the sand-colored room in a sea of blue and green scrubs to give my dad and me a one-minute summary.
As a medical student, the hospital is one of my favorite places to be. As a daughter, I dreaded every minute spent there. In my role as student, I understood the hospital’s inconveniences. But I never felt them viscerally until my dad faced them: the embarrassment of urinating in a plastic container and wearing an open-back gown; the irony of being told to “get some rest” after being awakened at 2 a.m. for a blood pressure check; the distance between patients and their providers; the confusion at conflicting or limited information, often rife with medical jargon.
“Putting in a PICC isn’t ideal as it’s obviously a nidus for infection,” the attending physician said to my dad one morning, who faked a nod of understanding.
I later translated: “Running a tube from your arm to the veins around your heart to give you antibiotics isn’t ideal because bacteria like to cling to those tubes and can cause other infections.”
Over and over, I felt grateful for my medical training — and also stunned by how often I had to rely on my knowledge to advocate for my father.
When my dad was out of surgery and no one had told us what the next steps were, I knew to call the hospital operator and ask to speak to his nurse in the post-anesthesia care unit who, with some gentle prodding, handed over the phone to the resident who had assisted in his operation. On morning rounds, I knew which of my dad’s labs and test results to ask about so we could gauge his progress as the attending physician said things like, “Your numbers look mostly good.”
I also spent hours coordinating between his cancer doctors and the team taking care of him in the hospital. I requested that his records — descriptions of his surgery and pathology reports — be sent to his cancer team. When their opinions contradicted those of the physicians on site, I helped my dad make his own informed decisions. I repeatedly reminded him that his care is his choice, even though it often feels like doctors call the shots.
When I wasn’t his advocate, I was his well-informed caretaker: I brought him a warm sweater, hand cream, tomato soup, and newspapers and magazines. When he was moved from the ICU to the main hospital ward, I told my generally highly active father to ignore the neon yellow “fall risk” sign hanging on his door as we took several walks down the hall each day to rebuild his strength.
My dad acted as his own advocate too. He told me that before I had arrived, when he had woken up and realized he was intubated, he signaled to ask for something to write with. When he no longer needed to be on the ventilator, he fended for himself more easily. When his care team changed his antibiotic regimen and, later that evening, a nurse tried to administer the old medication, my dad spoke up and corrected her. When the team decided to discontinue his blood work and two different phlebotomists stopped by to draw his blood, my dad was able to prevent the unnecessary pokes.
I worried about how much effort he had to put in to ensure his care after visiting hours ended. I texted him medication names, and he called and put me on speakerphone anytime a doctor came in with updates. Having dealt with all types of family members on my clinical rotations, I’m sure I was a nuisance to the care team. I can imagine what they might have said: “The med student daughter is asking so many questions,” likely accompanied by an eye roll.
On my own hospital rotations, I’ve seen at the bedside sister radiologists, son nurses, daughter-in-law surgeons, and other combinations. Exhausted and juggling so many patients at once, my colleagues and I received these relatives with a mix of camaraderie and mild annoyance.
But I also saw that these relatives had a better understanding of their loved ones’ care — and consequently the care itself was better. Their advocacy was, of course, bolstered by their expertise, but just as much by the fact that they never hesitated to ask questions. As much as medicine is moving toward shared decision-making, the reality is we’re not all the way there yet. When patients and their family members ask for explanations or question decisions, they remind doctors to act more carefully and be more deliberate about deciding the right treatment for each unique patient.
I took a cue from these relatives and asked all my questions.
It shouldn’t take a medical degree to ensure great care. I wish that doctors had infinite time to bridge the gap between their knowledge and that of their patients and patients’ families, but they don’t. Our hospital systems don’t allow for the highest-quality physician-patient interactions, and they sadly don’t prioritize patients’ sleep, dignity, or even understanding of their own health. Instead, hospitals put a premium on efficiency, often at the cost of confusing patients and reinforcing power dynamics that stifle shared decision making. Sometimes medical teams spend 15 minutes talking about patients’ bodies outside their rooms, and only 30 seconds explaining their thoughts directly to them. How can we expect patients to make informed decisions about their care when clinicians don’t — or can’t — take enough time to inform them in the first place?
I hope my advocacy will streamline my dad’s recovery and ease some of his discomfort and stress. But I also hope it will help me become a better physician — a better surgeon, specifically — one who listens intently, explains clearly, and advocates for my patients like I’ve done for my dad.
But I hang the bulk of my hope on a vision of a different medical system. One in which anyone, with any level of medical literacy, can make informed decisions. And where patients and family members don’t have to advocate vigilantly for their own care. My dad, and all of our loved ones, deserve better.
Orly Nadell Farber is a fourth-year student at Stanford University School of Medicine and a former STAT intern.
Reminds me of my advocacy for my patients, my mother and for myself as a medical social worker. I would shake my head and wonder how those without a medical advocate survived in settings designed to speed up medical services.
I had recovered from a moderate bronchitis but did not stop coughing. Finally went to see a pulmonologist who ordered a number of tests. I showed up for one test (can’t remember now the name of it) to have the technician ask if I’d ever had a ABG – an arterial blood gas – test. I asked him why on earth I was being given that test and he stated they needed my oxygen saturation. I asked why they didn’t start with a simple oximetry to which he replied, “I don’t have an oximeter up here.” (The lab was in the hospital in Greenfield MA.) I was horrified and said, firmly, “Then go get one” which he did and my O2 sat was 98!!!
p.s. After all the pulmo testing including a CT scan, I was told that when all other things are ruled out they suspect GERD and I was put on a brief course
of Prilosec which solved the problem.
After an 8 hour wait for my 11-year young daughter’s STAT appendectomy : I used some medical terms that promptly led to her being finally wheeled into the OR – in the nick of time as her highly infected appendix burst the second it landed in the kidney dish.
Years later : I would have died had a doctor friend of mine not taken interest in me on the Friday I crawled out of a clinic on hands and knees after 4 days of lousy Xrays and mis-diagnoses at the hospital’s ER (he ordered a CT scan that confirmed his notion of pulmonary emboli from DVT).
And if I had not clambered out of my bed to the nursing station that same night of my hospital admission, the lady in the bed next to me whose monitor alarm bells had been ringing for half an hour would have died (code red).
I have heard my daughter (a doctor herself now) call patients from her home in this time of Covid as I put her baby to bed, and she really listens and takes time to explain. She lives up to the expectation that harm from medical oversight / ignorance / indifference is NEVER acceptable. And there are many doctors like her, equally dedicated and sympathetic. Thank goodness.
Bravo (Dr.) Farber- you are already way ahead of many of your colleagues in realizing that neither health, nor care, much less the patient, are at the center of our medical system. I have seen it from all sides, as a physician in the OR and ICU, as a patient myself, and sitting at the bedside of family members and friends for days, helping to prevent serious errors, like when my mother, a non-diabetic was almost given 6 units of insulin for a blood sugar of 100. I was delighted to discover that over the years a growing number of equally frustrated and very engaged individuals had formed the Patient Advocacy Certification Board and created a board exam for patient advocates. Their goal was/is to establish patient advocacy as a profession and raise public awareness of its existence. I signed up immediately. As all the stories shared demonstrate, the need is great- and fortunately the ranks of independent professional patient advocates are growing- we come from all different backgrounds, many medical or allied health professionals, but many also from social work, case management or the insurance/finance arena. And while we often have to overcome initial resistance from practitioners and nurses, most soon realize that we are a valuable resource, not just for the patient but also for the care team. Covid-19 has certainly made it difficult and often impossible, but it remains my firm belief that no one should ever be alone in a hospital or have to face challenging diagnoses without always understanding all treatment options. It is great if someone is informed and savvy enough to advocate on their own behalf, but even for us ‘insiders’ it can be very difficult. That is where patient advocates can and do help. Thank you again Dr. Farber for sharing your insights. I wish you much success and hope these invaluable lessons will stay with you throughout your career.
Thank you, Orly Nadell Farber, for taking the time to share your (common) experience. Twenty five years ago I was a fourth year med student and we were encouraged by our attendings to note and try to ameliorate similar scenarios. I think we assumed that information technology then beginning to integrate into healthcare would facilitate better communication and safer care, freeing the healthcare team to focus on the patient’s healing process. Perhaps we can find ways to hold our medical system(s) more accountable for our patients’ outcomes, rather than holding individual clinicians ultimately responsible for systemic flaws. For example, what if we calculated costs to a healthcare system , in terms of patient injury or death, every time an error occurs due to insufficient time (or incorrect timing) for human-to-human interactions? As a family physician I’ve often wished there was a CPT-10 code for “(prevention of) injury due to systemic factors” in order to accurately reflect what the patient and I discussed.
Correction: ICD-10 (not CPT) code!
Thank you so much for sharing your story about your father’s care experience in STAT News. I have been in a similar position in navigating my mother through her last several months of life and when my 18 year old daughter became gravely ill after a botched wisdom teeth extraction. While not a physician, I work in healthcare administration and know just enough to ask questions and have access to folks who are physicians. My realization is that without my intervention, I believe both of my loved one’s would have received care that was not optimal. It was a humbling and unsettling experience. The experiences also helped me so clearly understand how privilege plays into care delivery and communication.