Last week, the British Medical Journal (BMJ) ran a compelling opinion piece from Boston physician Dr. Abraar Karan on why some patients just don’t seem to understand what their doctors are telling them. Here’s how he opens his essay:
“Why am I here?’ Mrs. S looked up at me for the first time since I had entered the room and begun speaking to her. I had spent the past five minutes talking about the need for her to start new medications for her heart failure. She had nodded along for most of the conversation, but I wondered if she had heard, or more importantly understood, anything I had been saying. She had had three admissions for worsening heart failure in the past few months. And yet she looked at me and said, ‘Do I have heart problems? No one ever told me!'”
Dr. Karan, who is an internal medicine resident at the Brigham and Women’s Hospital/ Harvard Medical School, and author of the book “Protecting the Health of the Poor“, felt understandably discouraged and disappointed by her puzzling response to his important explanations. Was her apparent confusion because no other doctor had explained the diagnosis to her? Or that the explanations had been too complicated or jargon-heavy for her to comprehend? Or was this a symptom of her low health literacy? (Health literacy is simply the capacity we have to obtain, process and understand basic health information and services needed to make good health decisions for ourselves).
Dr. Karan also asked himself, “Have we as a medical system collectively failed to communicate effectively?” but he eventually began to wonder if perhaps none of these issues was the sole culprit all by itself.
Maybe this wasn’t just about a doctor’s ability to communicate the facts of a medical condition.
When he discussed this troubling case with his colleagues, some mentioned to him that “communication is only one part of the equation”. One experienced doctor suggested the possibility that Dr. Karan’s patient was in denial.
“What if I had missed an important consideration – that Mrs. S just wasn’t quite ready to accept her diagnosis? Denial is a complex coping mechanism – a universal emotion that almost anyone reading this has dealt with – and which may play a much larger part in people’s ability to understand their own illness than we appreciate.”
Was she aware, he wondered, that she was possibly nearing the last year or two of her life (repeat heart failure admissions to the hospital do, in fact, predict mortality).1
” I then wondered – maybe it was not a failure to explain on the part of her medical teams, but her own difficulty with acceptance that she was quite sick.”
And even if she were not in denial, was his patient perhaps just too overwhelmed by this distressing news to properly process what it meant? He added:
“I fear that we don’t always take the time, or are even adequately trained, to figure out what patients do and don’t understand, what they do and do not accept, and what they are and are not able to cope with in that moment. In one study, nearly 40% of hospitalized patients had no understanding regarding their plan of care for the day – and only 32% remembered the name of even one of their doctors – 60%, however, could name their nurses.”(2)
My own response to Dr. Karan’s observations was mixed.
Everything he wrote made sense to me. And for 10 years, I’ve been grappling with this same question of why doctor-patient communication seems so fraught with potential misunderstanding, including my essays on the dangers of heart patients in denial (here, here, and here, for example) and women’s treatment-seeking-delay behaviours during heart attack.
But something also seemed to be missing, and in my subsequent reader response to the BMJ, I described the missing bit as “the inherent hierarchy in medicine that supports this communication gap”. Read more about speaking up within this hierarchy: “While We’re At It – and I Am Always At It…”
Here’s what I wrote to the BMJ:
“While growing up in my family during the 1950s, I observed how deferential my parents, especially my mother, always were towards our longtime family physician, and of course towards any specialist that physician may have ever referred them to over the years.
“My mother, who was whip-smart but had little formal education, believed that whatever doctors were telling her must be right, that any recommendation was clearly the best one, that doctors wouldn’t be prescribing anything unless she really needed it. And that was good enough for her.
“She was also highly aware of a doctor’s very valuable time, and thus reluctant to waste it by asking him to repeat what he’d just said, or to clarify complicated instructions, and most important, extremely reluctant to appear stupid in front of him if she had to admit she hadn’t understood medical jargon he had just used in front of her.
“I’m pretty sure she had smiled and nodded throughout each medical visit no matter what the doctor said, and very likely even answered ‘No, Doctor!’ when asked if she had any further questions or concerns. For decades, her family physician likely felt confident after each visit with Mom that all had gone well, and that he had appropriately explained what each test result, medical decision or upcoming procedure was all about.”
” I was reminded of my own mother recently when an elegantly-dressed older woman in one of my audiences raised a beautifully manicured hand during the Q&A and asked me: ‘Carolyn, my doctor says I have a ‘heart rhythm’ problem. What does that mean?’
“I wondered at the time how this articulate, intelligent woman had managed to leave her doctor’s office without knowing anything about her diagnosis. The likely reason: she was very much like my own mother…”
But this apparent inability to understand the doctor is not unique to elderly women.
When a cardiologist was called into the Emergency Department during my previously misdiagnosed heart attack and said to me the words “You have significant heart disease,” I could see his lips moving and I could hear sounds coming out of his mouth. But I honestly could not comprehend one word he said after that fateful pronouncement.
I also recall asking the cardiologist if I should make an appointment while I’m here to come back later to have this significant heart disease checked out. “NO!” he replied, a bit too loudly, I thought. “We’re going straight upstairs right now!”
As Dr. Karan’s conclusion suggests, neither he nor any physician can ever be completely reassured that even a smiling, nodding patient understands anything that’s being said.
He blames what he calls the “undiagnosed disconnect between what doctors think their patients understand and what they actually understand”, and he further urges thatintegrating medical communication as a formal practice of study into medical schoolcurricula would be an important start:
“Mrs. S said to me that no one had ever told her she had heart issues, and I tried my best to explain further. Yet I couldn’t be entirely sure that she understood, accepted, or even truly wanted me to be explaining this to her in that moment in time. She looked at me, smiled, nodded, and offered a polite, ‘Thank you.’ But in a few weeks or months’ time, will she ask her next doctor the same question, and might they also wonder, as I did, where her previous doctors went wrong?
“As much as we must ask how much our patients understand about their illness, we must also ask ourselves how much we understand about our patients. Patients do not always remember what we say, but they will always remember the way we made them feel.
“We need to do better at knowing what to say, how to say it, and when to say it if we want communication to truly work.”
1. Lin, AH et al. “Repeat Hospitalizations Predict Mortality in Patients With Heart Failure.” Mil Med. 2017 Sep;182(9):e1932-e1937.
2. O’Leary, Kevin J et al. “Hospitalized patients’ understanding of their plan of care.” Mayo Clinic Proceedings vol. 85,1 (2010): 47-52.
NOTE FROM CAROLYN: I wrote much more about doctor-patient communication in my book, “A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 30% off the list price).
Q: Can you relate to Mrs. S, who believed she’d never been told about her heart condition?
19 thoughts on “Denial? Or doctorly deference?”
Such a great conversation. I agree wholeheartedly with Dr. Karan re denial. But I do also think that doctors just plain do not communicate.
For instance, I had heart failure for a few years before anyone even told me about it, and I only found out because I was researching doctors’ reports in the hospital portal and came across it with all the other stuff under Diagnoses.
Next appointment, I asked my then-new (for me) cardiologist, “Do I have heart failure?” She seemed shocked that I did not know, but she said yes and very carefully explained everything to me.
Also, I had no idea that “aortic stenosis” was a really bad thing until she said it was time for me to get a new valve! My previous two (male) doctors just said, “you have moderate aortic stenosis. Don’t worry about it” and then ran out to their next appointment. I had no idea what that was, but I didn’t worry about it.
The whole question thing makes me nuts. I have kept my present cardiologist in spite of the insurance company’s attempts to make that as difficult as possible because she answers my questions carefully, listens to what I have to say, and collaborates with ME on a course of treatment.
But when I’ve been admitted to the hospital, doctors and nurses (particularly nurses, it seems) treat me like I’m a total jerk for asking “What is that drug you’re giving me and why?” How dare you question us!
As a person with diabetes, they decide that they know best what works for me and will brook no questions about the change in dosage or drug. “Don’t question why we do things. This is the way we do it here.”
Doctors just seem to assume that you know what they’re talking about. What they’re generally thinking about, it seems, is getting out of the office to their next patient.
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Thanks for this, Wendy. I don’t know you at all, but you seem to be an intelligent, articulate person, and yet you had no clue that you had heart failure.
This is an important reminder for all of us, and especially for physicians who make assumptions that a smart patient will understand everything they’re saying (even the impossibly arrogant jargon so many use – like the cardiac surgeon who once answered a patient’s question about why her arm hurt during her heart attack in this laughably unintelligible fashion: “The pericardium is innervated by C3,4,5 (Phrenic nerve). There may be some neuronal connections to the intercostobrachial nerves.”
When I was in mid-heart attack in Emergency, I asked the nurse the name of the pill she had just given me. “Plavix”, was her clipped one-word response. Although I was soon to become very familiar with this drug, what average person off the street has ever heard of Plavix, and why would the clueless nurse expect anybody who has never had a heart attack to be even remotely aware of it?
“What does it do?” I persisted (because I had no idea what Plavix means). “It’s an anti-platelet drug” she answered. But what the hell does that mean, and why do I need an anti-platelet/!?
Why do we have to ask trained healthcare professionals to speak plain English to their sick and frightened patients?!
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I recently had a heart attack, about 10 days ago. The doctor, who I’d not seen in the E.D. before, told me what I’d suffered and that I needed an echocardiogram and angiogram before they would know what damage was done. What he didn’t do was explain properly what medications were being pumped into me.
In fact the nursing staff were almost insulted that I’d even questioned them about the tablets and injections.
I am quite well informed about health matters and am active in doing everything I can to stay healthy. That said, my tests showed that there was no damage to my heart and there were no obstructions in any of the blood vessels. Add to this there is no sugar or cholesterol problems in my blood test….
Everything has been perfect prior and post attack. As yet no one can tell me why I had the attack. I am unable to walk 30 metres without heaviness of chest and shortness of breath.
Communication is very hit-and-miss, even with the cardiac rehab people – all that woman suggested was diet modification (hard to reduce what you don’t consume).
I still don’t know what to do to recover…. Hence my finding this blog – searching for answers.
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Hello Julie-Ann. Thanks for your comment, and welcome to the exclusive club that none of us ever wanted to join…
You are in VERY early days yet, so no wonder you have lots of questions and very few answers. And it can be overwhelming when a healthy person with few if any cardiac risk factors suddenly has a heart attack. When I was doing my WomenHeart training at Mayo Clinic, we had a class of 45 women, all heart patients, ages 31-71, a group that included vegans, a triathlete, competitive cyclists, and even a physician. You can imagine how shocked and stunned these women were, too!
That WHY? question is very common, and completely understandable given your description that everything was “perfect” before. Clearly, things were not perfect – since heart attacks don’t happen to people whose hearts are functioning “perfectly”.
For example, we know that heart disease is often 20-30 years in the making. Unless you’ve been diagnosed with something like Spontaneous Coronary Artery Dissection, you didn’t have a heart attack because you ate a piece of bacon or had a stressful day at work. You had a heart attack because something has happened to your very delicate coronary arteries – probably decades earlier. But many times there is simply no answer to “WHY?” and it’s crazy-making to keep picking at that scab.
There are however answers to your important questions about meds. I too have seen the slightly surprised look on Emergency nurses’ faces when I had the audacity to ask them “What is that?” when they were administering drugs. Of course I want to know what you’re putting into my body!!
Your only job in life now is to become the world expert in what has just happened to you. Read, ask questions, look stuff up. And make an appointment with your physician for a medication review. Continue going to cardiac rehab (the very best way to address those current symptoms while walking – just take it nice and slow and you’ll be amazed how much better you’ll do on those walks over time).
The physical elements of your cardiac event have been nicely handled, but now the psychological and emotional stages of recuperation begin. I recommend you read Dr. Wayne Sotile on the four stages of recovering from a heart attack. I wrote about these stages here.
Best of luck to you…
Such an important topic! We have experienced these communication gaps and misunderstandings with our family members and their doctors as well.
What an amazing idea to include communication as part of the medical school curriculum, in this area certainly not all doctors are created equal. I think there should be a campaign either through medical doctors’ professional colleges or through hospitals that encourage patients not to leave the office/hospital uncertain and that their questions are both valid and welcomed by doctors.
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I agree – this should be included in med school. I advise patients all the time NOT to leave their doctor’s office or the hospital unless they feel fully informed about their discharge plan and next steps. Trouble is: it requires strength and presence of mind to do this insisting, and when you’re overwhelmed or ill, you may have precious little of either quality…
I love your blog! No matter the diagnosis, the reality of living with a chronic illness is commonly familiar. I particularly liked your post called “Then There Was That Time I Got Sick From Optimism”, particularly this part:
“’Who is in charge of you now?’ meaning, which doctor is coordinating and spearheading my treatment? I was a little taken aback, I figured she should actually know that — the trouble was, I didn’t know myself… My ‘perfect storm’ was a result of a complicated illness, involving a number of specialty areas across two different hospitals. Don’t get me wrong, my doctors do communicate amazingly well, considering, but I now understand that I am the one in charge of me. It is up to me to make sure that my care is coordinated and makes sense….”
Every word – so true!
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I was once hospitalized for what turned out to be internal bleeding. The hospitalist wanted to take me off the coumadin, but I said no, my cardiologist was very much against that. She looked thoughtful for a minute and then said, “Do you happen to have your cardiologist’s phone number on you?” (My cardiologist was not affiliated with this hospital.)
I did. She called the cardiologist and then came back and said, “I talked to your cardiologist and now I understand why you have to stay on the coumadin.”
At my next appointment with my cardiologist she said, “Yeah, the hospitalist called me. They almost never do that. It was kind of cool, actually.”
I was shocked. Why in the world would they NOT call the doctors of a woman with multiple severe and complex medical problems? Baffling to me.
I stay at a medical practice/hospital, have all my specialists and my primary there, so they have an actual idea of what’s going on. Unfortunately, it’s not the “closest” hospital, so whoever’s treating me in an emergency does not have immediate access to my medical records and apparently don’t much care.
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What a story, Wendy! That is simply appalling – that your cardiologist would be pleasantly SURPRISED that a hospitalist would make an effort to make an appropriate decision for a patient with complex medical issues? Wouldn’t that be a minimal standard of care?!?!
What if you hadn’t spoken up, or if you’d been unconscious, or if you were afraid to speak up?
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I know that my health care facility (UC Health Colorado) did an amazing job with patient education but the truth is that my brain was in a complete fog going through everything that I experienced after a “Widow Maker” heart attack and cardiogenic shock.
Follow up for me and my spouse days/weeks later would have been an enormous benefit. Instead, we relied on the internet.
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I agree 100%, Inge! If no follow-up support from the clinical team is offered (not only in a format that we can understand but just as importantly, WHEN we are able to understand it), patients can and will go elsewhere to seek the help they need.
That “brain fog” phenomenon is real, especially in the early days, but when it starts to fade, it would be so useful before we’re discharged from hospital to have a resource list of reading material, educational films, or credible websites (Mayo Clinic is a great place to start) with a reminder that when we’re ready, these resources may help to answer some of our questions as they arise.
Even the early acknowledgement from our healthcare team that things may feel overwhelming right now, but will start to fall into place with recuperation would be a helpful thing to hear, wouldn’t it?
I also think it’s important for hospitals and doctors to ask, how do you remember best: seeing, hearing, or in writing? I suspect for many folks it’s a combination of all three!
In my doctor’s office I take notes and ask questions, and I can do this because my doctor gives me time to do it. But in the hospital, after a procedure, and a coma? Good grief! Patiently tell me, anticipate questions I might have, and then give me it in writing, please!
And finally, recalling an earlier post, don’t be impatient with questions!
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Hello Pat – see Jill’s comment (below) for her comparable observation, “Years ago hospitals started asking patients the question; How do you learn best… visual, verbal, written?” Not sure where those hospitals were (certainly not where I live!)
We all learn in very different ways, which is why patient education can’t possibly be effective if it’s only available in one format (for example, giving heart patients just an informational brochure upon discharge). For some, this would be plenty and they would read and re-read that brochure and then share it with family and friends until it was dog-eared. But for others, this brochure would just lie there, untouched.
I like your idea that, since we all know precisely which way of learning generally works best for us, we don’t need to wait for a clinical team to quiz us about those preferences. We can try being proactive in communicating what works, e.g. “I’m a visual learner, so pictures or diagrams will help me the most”.
Patient education must be offered more than once, and in different formats so that every patient (whatever their personal learning styles) is offered enough basic information (and a list of further resources to look up later) to help guide us through those early post-diagnosis days.
I believe that hospitalization itself causes a certain mental/ emotional state that is not conducive to learning. A combination of shock, pain, medications, PTSD, and altered sleep/wake cycles – leaves the patient/learner in a state of “survival consciousness” where the brain is only interested in survival not learning complex concepts of health and disease.
Imagine a college student attending a lecture on quantum physics homeless, drugged, without sleep and in pain. I don’t think he would retain much information.
Years ago hospitals started asking patients the question; How do you learn best… visual, verbal, written?
But the principles are not often applied. Time is short for the nurse and the doctor in the hospital.
The day that patient education takes on the importance of pharmaceuticals in the arena of continuity of care… is when things will change. A Plan would follow the patient, where educational objectives are set, notes about teaching that has been done, how the patient received the information and the need for repetition and re-enforcement addressed.
Also health care providers need a more patient centered attitude “How May I serve?” Rather than a “ me” centered attitude of How can I get this visit done and be on my way?
Just sitting in a chair, facing a patient eye to eye, asking what is foremost in THEIR mind, not yours, answering their priority questions and then requesting their attention so that information might be exchanged.
Patient education is a complex issue that must bridge the inpatient and outpatient experience.
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So many good points, Jill.
I’m not sure where I was when hospitals were asking patients about their learning styles…. By the way, Dr. Harlan Krumholz at Yale agrees with your assessment of how simply being a hospital patient can mess us up (he calls it the Post-Hospital Syndrome, blaming it on the many factors we endure in hospital from sleep deprivation or poor nourishment to medications that can alter cognition/physical function or becoming de-conditioned by bed rest and inactivity). NO WONDER we have trouble understanding anything!
I love the idea of an education plan following the patient. Just today I read in the journal called Academic Medicine about a movement to start using language that reflects WHO is the centre of care (i.e. THE PATIENT!) You can read the whole study free by clicking on the PDF version.
This is revolutionary stuff. For example, the researchers suggest that clinicians should stop using the commonly used phrase “take a history” – but instead replace it with “learn the patient’s story”.
Not “complaint” – but “reason for the visit”.
Not “doctor’s orders” – but “shared decision-making.”
Words matter. Just as much as eye contact with the patient does!
Excellent post today Carolyn! “Patients do not always remember what we say, but they will always remember the way we made them feel.”
This is almost a direct repeat of the quote in my daily planner for June 7 by Maya Angelou — “People will forget what you said. People will forget what you did. But people will never forget how you made them feel.” And I totally agree with that.
I completely understand denial since I’ve been there. Told I needed a cath and facing my own mortality really for the first time — it was overwhelming! I literally thought, “Heart disease happens to other people! It can’t be my heart!”
I had a woman in my cardiac support group last week who is totally in denial. She has some unusual symptoms which definitely sound heart-related but is really terrified to find out what it is. We kind of came down hard on her trying to convince her that she would actually feel less afraid knowing what she’s dealing with and what she needs to do about it. If she won’t have a stress test, I suggested just a consultation with a cardiologist. I hope she does come out of denial and follows our advice.
As for communication — a wonderful technique to make sure there is understanding between you and another person is to simply have them repeat back to you what you just said. My husband learned this over years of doing customer phone support for technical issues and then we learned it again in a marriage conference (how many marital issues are caused by misunderstandings that can be easily cleared up with just a little extra clarification?). “So what you are saying is (xyz), do I have that right?”
I’m thinking Dr. Karan should never have left Mrs. S. until he was sure she understood. He should have taken a lot of time with her since she obviously wasn’t getting it and was very upset. “Tell me what you have been told by other doctors,” or “Here is what we’re seeing today, I want to be sure you understand so please repeat back to me what you are hearing me say.”
Maybe she would not have been able to do that, but if she could have, hearing it come out of her own mouth would no doubt have lessened her denial. But overall it might have produced a much better outcome for an overwhelmed patient who is suddenly facing end of life issues.
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Hello Meghan – I’ve heard that Maya Angelou quote before too, and it’s a terrific one.
I really like that “tell me what you’ve been told by other doctors” approach (although, recalling my own mother as an example: I know that she would have insisted that nobody had ever told her anything, at any time, even when we knew that this wasn’t true!)
That’s the power of denial. You simply cannot absorb it at this time.
I actually observed that “please repeat back to me what you’re hearing me say” technique backfire big time while sitting vigil at the bedside of a seriously ill friend for 5 1/2 weeks a few years ago. Her diagnosis and prognosis was so devastating (including permanent untreatable blindness as a direct result of her condition) that she interpreted that question from the physician as some kind of a ‘pass or fail’ test. She became agitated and defensive, insulted because she was being put on the spot at a time when it was impossible for her brain to accept what was being said (and it took her months – MONTHS!– back at home to even remotely start grasping the reality of her condition – and her new life).
That woman in your support group is another example of how powerful denial can be. It can be protective at first (that’s the good denial that just gives us time to absorb a reality that’s too painful to accept) but when it stops us from seeking medical help for fear of what the diagnosis MIGHT be, it can be dangerous. I wrote more about the good (here) and the bad (here) forms of patient denial.
I don’t think they’d ever send a man home from open heart surgery without a doctor speaking to him to explain how the surgery went, what was done, and …. that he was in a three-day induced coma, and why.
But that’s what happened to me. Doctor’s excuse being that the two times he came into my hospital room I was in the bathroom dealing with the usual surgical drugs/intense constipation. I heard his voice saying ‘she’s always on the pot’ … and that was the last of his presence until my follow up appts in his office.
I was paying a helper to drive me home and to appts, to clean and cook while I recovered, as the drugs were still so strong in my body I could barely function, and I live alone. I was given home care in the form of a nurse and a PT once a week, covering two weeks, neither of them mentioned the coma.
I found out about my coma while my helper was making up my bed, I was sitting waiting for her to be done … I commented that I didn’t understand why, three weeks after getting home, I had no strength. She replied ‘Well, you were in a coma after all.’ … Shock!!!
I was so drugged that it didn’t fully register to me as to why I was in the hospital one full month after quad bypass (leaving the remaining six blocked arteries too small to repair). I also had been put in a room by myself after I came out of the coma I knew nothing about.
And – they were still giving me morphine until I finally became alert enough to ask the nurse what he was giving me each day. Thing is: my first three days in that room alone – I fell onto my walker three times trying to get to the bathroom on my own. Each time a guard came in to pick me up … no one else ever told me about the drugs and the coma … so, I fell two more times, badly hurting my already bone-on-bone knees.
Not having a spouse or other family member put me at distinct disadvantage as far as someone overseeing my care and getting the facts.
Also, they put a Fallen Angel sign on that hospital room door and that ‘report’ followed me in my medical records to my next major surgery, bilateral knee implants and the doctor there didn’t trust me to use a bed pan or get to the bathroom myself, so I became the bed-wetter all the nurses and aides despised.
I’m so positive men would not be treated like this, in fact I once heard a nurse overseeing colonoscopy patients coming out of anesthesia … she was … true fact – talking baby-talk to a man (who appeared to me to most likely be a businessman) … and I was totally ignored. It happens. Too often. I doubt this prejudice will ever change.
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Thanks for sharing that experience, Michelle. You’ve offered us yet another reason to add onto Dr. Karan’s list of why patients don’t seem to understand what’s happening: too drugged/incapacitated to comprehend. This is an especially important gap in care when dealing with a patient who does not have a spouse or other family member sitting at the bedside every day to ‘run interference’ on what’s happening.
Even if you hadn’t been in the bathroom for those two visits from the doctor, it’s entirely possible that a person like you who could “barely function” would have had trouble understanding what that doctor was going to say, coma or no coma. Most patients need to hear the details more than once, and from different people.
I wonder why the physical/mental state of the patient wasn’t taken into consideration? And more importantly, why during a full month in the hospital after quad bypass, wasn’t there time for any of the nurses to be delegated to explain to you (more than once preferably) what had happened and to answer your questions?
Everything that had been done to you was right there in your chart – any competent nurse could have helped you, ideally every day you were in.
And finally my pet peeve, as a person who worked in hospice palliative care for many years before my heart attack: as one of our docs used to say: “The hand that writes the opioid script” (morphine, in your case) “writes the stool-softener script at the same time…”
No excuse for post-opioid constipation except ignorance of appropriate care instructions.