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.
When an important person in my life was twice in the hospital, I was afraid to leave the room. The treatment errors I prevented, some of them potentially life threatening, were astounding. Once I watched a single RN try to juggle care for several hours among six patients at once (not too successfully, I might add), while four other nurses, presumably senior, sat around at the nursing station gabbing. The one working nurse looked absolutely exasperated. This is not a slam on nurses, who are both invaluable and underappreciated. All I could do was shake my head and speak up. At the time, it was a four star hospital. These days it barely manages three.
Doctors are just like auto mechanics, some are good and some are bad. Just because they look like they know what they are doing, doesn’t mean they do.
You have to pay attention.
I’ve too had similar experiences trying to decipher, coordinate and sometimes gently steer treatment decisions for relatives, and wondered how patients who are not so lucky to have informed friends and relatives nearby to go to bat for them. I also think it’s highly likely all my healthcare colleagues start advocating even earlier–to see that their loved ones are cared for by the best people available–in the best facilities available.
Then I read some of the comments. Holy crap!
Orly, thank you for sharing your experience advocating for your father. Your commentary brought tears to my eyes. All I could think was, “been there, done that.” I am also a healthcare professional (pharmacist) and over the last several years needed to be an advocate for my elderly parents through numerous hospitalizations, rehab stints and eventual transfer to hospice care. I know my parents got better care due to my advocacy (in person and as the nag on the phone) as well as their both being healthcare professionals. I often wondered (and still do) what happens to people who do not have a well-informed healthcare advocate in their corner during the confusing, and often scary, environment of the hospital. All patients need someone who knows what questions to ask and can translate “Med-Speak” into understandable language. I often laugh when a physician listens to my “translation” and says, “gee, I need to remember that.” Hopefully I have helped the next patient she sees.
Bravo. When my mother had a Guillain-Barre-like incident in 2019, she was discharged from the hospital to a rehab facility with a diagnosis of stroke. It was only months later when we learned that her doctors doubted that diagnosis but were forced to put something on the form. And that was with me there in the hospital 12 hours per day doing my best to understand her care. I can’t imagine her going through that now, when visitors are not even allowed in the hospital.
As a cancer survivor and 35+ year retired surgeon I can only say this article is brilliant. I spent 65 days in my own hospital a year ago and was shocked when seeing what we do from the other side. As a patient I was agast at the minimal time my colleagues spent with me as opposed to with my records in the hall or even elsewhere. The error rates of little things as you pointed out like drug changes and IV alarms were beyond my own disbelief. I guess as medical personnel we are a but anal retentive and maybe edging on the OCD side but the attention to detail is simply not there. Sure, maybe it doesn’t need to be to get a good outcome but we have spent literally hundreds of Billions of dollars on technology to avoid having to deal with the minutiae and yet the minimal details are the ones that build up to full-blown crises. If we are to suggest that waking up a patient at 2am for a BP check is valuable then we also must be clear that an IV alarm to indicate the need for a new solution change must also be of some value otherwise why have them at all?
Surely a quick ”blow in” and suggest ”all is well see ya later” is not what a patient needs or wants and if it is then why not do it remotely allowing them to be at home rather then in patient and us not have g to waste time in white coats walking the halls of these facilities. If we truly don’t need to be hands-on then why be there and be hands-on? If not then allow the patient the peace and support they want elsewhere. Surely it is not good form to suggest that ”tornado medicine” (you know the type blow in blow out leave a nice wake in the process) isn’t in anyone’s best interest. I was shocked to see the needless amount of nonsense we do simply because it is SOP while the important things are never even considered. Patients need translations as much as we need scribes. We need to put the care back in caring and cut out the rest of the standard protocols simply because we have created them or worse they are there as preventative measures applied by none-medical departments. If it weren’t for my knowledge as my wife’s 20 years of partnering with my disease I would have been absolutely lost in my own care and treatment. Looking back I am ashamed at my profession although we have grown amazingly well technologically we have failed in communicating and educating so as to create a patient-care team approach. We simply are so used to taking everything on our own word we barely allow the patient sufficient input or education to allow them to process the process.
Kudos for this article hopefully it gets the needed Internet Virality it deserves.
As I physical therapist, I feel like sometimes I can fill the gap. Not saying I am an MD or RN, BUT I can help explain concepts to people, review general surgical procedures (that I understand of course) and help people organize their thoughts, like writing lists of questions. These things are super complex and patients get a crash course while going through some of the worse times of their life, often times (especially now) alone. I’m sorry for your experience, but it sadly is not unique.
Exactly same thing happened here in india.same struggled we have faced even after having two people from medical breakground just because our father was admitted hospital treated so poorely and staff and communication myself was in fear if i as ask que as a doctor would they give my father more pain as here alsoannoyance seen preety much and patient cant even recover beacaue no medicine iv is given at time ..gros negligenace and laziness.we dont even see a consulatant let alone super specialist im ward doing round or visiting patients..
Heaven help anyone in the hospital, rehab facility who doesn’t have an assertive and informed advocate who loves them and has a medical or nursing degree. Similar instances with both of my parents
Susan you as so right. Even with a degree, it is hard to wedge oneself into the decision process of inpatient care. The providers simply go about the robotic process and God forbid anyone lest a patient interferes with that process.
Yeah, welcome to the world of health care. I’m a veterinarian with a PhD in Neuroscience. In the 1990s, while visiting my dad who had colon cancer at the time, I took him to the clinic administering his IV med. I watched the nurse hang the bag, then something motivated me to go look. She had given him someone else’s medication. Completely wrong medication, different patient name on the bag.
Same thing with my mother. I was visiting her in the hospital after her total hip replacement surgery. Nurse came in with blood since she had lost too much during surgery, hooked her up. Note that my mom had donated her own blood prior to surgery. I checked the bag. It had someone else’s name on it!
I personally would be dead many times over if I hadn’t been a strong advocate for my own health and made myself a total pain in the ass. The last screw up was during my own hip surgery in 2017. I have adrenal insufficiency and need a stress dose of hydrocortisone administered during surgery. I told the surgeon, the anesthesiologist, the OR nurse, and it’s written on the front of my record. I had a different colored wrist band on. It wasn’t done. Within an hour after waking up from surgery, I was in an adrenal crisis, my sodium was very low, my potassium high, I was vomiting and having arrhythmias. Thankfully, I somehow had the presence of mind to alert the nurse and I didn’t die.
Someone please explain to me how these failures continue to happen in the most costly health care system in the world. These are just A FEW of my experiences. God only knows how non-medical people survive our healthcare system.
Comments are closed.