Improve health care by seeing through the patient’s eyes

Is there a patient who goes through a hospitalization who does not have stories to tell about the obstacles, errors and indignities that they endured? I just wonder sometimes.

A family relative was hospitalized this week with a stroke at a hospital a few hours from me — and his experience left me demoralized about medicine.

Joe (not his real name) is an 82-year-old grandfather, father, husband and one of a kind. He has a scraggly beard and ponytail. He possesses an artistic spirit, but is punctual to a fault – always early, never late. He has an integrity that is rare these days, which led to a loyal following in business and life. And yes, he is devoted to his family.

On Tuesday, he developed some difficulty with his balance. His wife of over 60 years was worried and brought him to the doctor.  That is when the issues began.

Issue #1. His doctor fit him into her schedule and recognized the possibility of the early signs of stroke and sent him for an MR imaging study of his brain. And she also gave him an aspirin, which he promptly took. The problem is that the MR study revealed a small bleed in his brain — and the last thing you want to give someone bleeding in his brain is an aspirin because it can cause more bleeding.

Issue #2. At one of the nation’s most reputable New England hospitals he was evaluated in the emergency department and admitted to the hospital. He is brought upstairs to the stroke ward fairly late and he is exhausted. Even later he is told that he must have a CT scan of the brain.

He is stable. His symptoms are not changed. Nevertheless, someone orders a CT scan. There was no discussion about whether he should have the scan with Joe’s family; they were told he needed to have one. After the scan, his family is told that the scan will not be read until the morning when the radiologist arrives. They push and are told that the technician looks at the scan and would let someone know if it looked abnormal.

They push a little more and ask that they speak to someone who is managing his case. A resident arrives and tells them that there is nothing alarming. The family asks if it will be compared with the scan from earlier in the day  (as that was the reason they took the scan 6 hours later) and are told that scan hasn’t been uploaded yet, even though it was with Joe’s records when he was in the emergency department.

They ask the resident to retrieve it from the emergency room and make the comparison. Finally they are told that the radiologist in the ER reviewed it — but when they ask who reviewed it, they are not told a name.

Issue #3. It is now even later still on Tuesday (well, past midnight so early Wednesday) and Joe is ready for some sleep. His nurse comes by and feels it necessary to do some education. She tells him that he probably will not be able to drive for a while and might have difficulty getting around. It is not clear why that shocking news needs to be delivered at that moment. It’s not like he is about to jump in a car and drive himself home. Then she hands him a pamphlet about stroke.

The family starts reading the book, hoping for some insight about what is happening. The book is simplistic, but does say that bleeding strokes are very dangerous and cause many deaths. This information, provided in the middle of the night and without further information, provokes a lot of anxiety, making it difficult for Joe and his family to sleep. They are now worried that he will die. Education may be good, but the book’s message is not really relevant to Joe’s condition at that moment.

It feels like there is some checkbox that needs to be ticked that conveys that the patient received education. You can imagine the nursing notes documenting that the education task was completed.

Issue #4. The next day an intern comes in early and examines Joe. A few hours later an entire team stops by and nods their heads. The senior physician explains that they want to observe Joe during the day and get him started with physical therapy. The importance of physical therapy is emphasized. A member of the team promises to come by at 2 pm and to talk with other members of the family. He never returns.

No other member of the team stops by during the rest of the day.  No doctor has spent more than a few minutes with him except for someone that the family arranges to come by through a personal connection I made. That doctor is kind and thoughtful, but introduces a diagnosis that was never mentioned by the morning team. No doctor comes in after that.

The family is unsure all day whether they will see a doctor. The plan for the day is never quite clear. Overall, the day is consistent with a recent study that says that doctors in training spend just 8 minutes a day with their hospitalized patients.

Issue #5. The family waits for physical therapy all day, but no one comes by their room and no information about it is conveyed. By late afternoon, the family checks with the nurse to ask about the consult. The family is told that the physical therapy team is very busy and they will get to him when they can.

Physical therapy never shows up and there is no explanation from anyone about it. Until very late the family is hopeful that someone will start the rehabilitation since the attending doctor emphasized its importance and said that someone would.

Issue #6. It’s late. Joe and his family, who have not left his side, are tired. Someone comes to the room and says it is time for another CT scan. This news surprises them as they were told the CT Scan was going to happen the next day – though they were never told why so many scans are necessary, as Joe’s condition is stable. Joe is compliant and heads down to radiology.

The exact same scenario from the night before ensues. No one is available to read the scan.

Issue #7. The day is ending. Time for sleep. When I asked the family when Joe will be sent home, they said that they do not know. No one has talked with them about that yet, but they think that maybe it will be tomorrow. They are not sure.

At this point, Joe has been in the hospital only about 24 hours and he has experienced a medical error, poor communication, lack of empathy, broken promises, (perhaps) excess radiation and testing, and delayed interpretation of studies.

Fortunately and remarkably, he is doing fine and hoping to get home. The nurses have helped. They exude a certain grumpiness and a sense of being overworked and uninspired, but they clearly as the ones who make the place run. They are about the only medical staff that Joe sees.

The problem is that nothing about this saga feels exceptional. The system is just poorly designed to provide error-free compassionate care for the patients and their families. The medical teams accomplish their tasks, but rarely pause to perceive what the patients are experiencing – and to reflect on how they can ease the journey of their patients.

Our path toward improving health care is to see through the patient’s eyes and feel their experience. When we do, the world of opportunities to do better opens up to us.

Joe’s day was hard enough when he developed the stroke — the health care system should be doing all it can to make things better for him.  There are people who are exceptions and demonstrate engagement and compassion — who ensure that services are done well and with a positive attitude — and contribute to a healing environment. But why does that have to be exceptional?

Harlan M. Krumholz is a professor of cardiology, epidemiology and public health at Yale University School of Medicine. He blogs at Forbes, where this article originally appeared.

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  • PoliticallyIncorrectMD

    Point well taken, however why don’t we concentrate on the big picture. They SURVIVED the ICU! Why don’t we applaud the efforts of the ICU team instead of criticizing them because the patient’s ICU stay was less then satisfying?

  • guest

    so what’s the ending of this? What did the CT show? Would this have changed the course of his care? Or is the article written to give us just the flavor of how confusing and jolting the experience was?

  • guest

    Conclusion. we’re all doomed…
    But we’re sure to get the most sophisticated imaging.
    Whatever that means.

  • PoliticallyIncorrectMD

    There is no effective treatment / prevention for ICU delirium – it is a “natural” body response to near-death-experience superimposed on less then gentle interventions patients are subjected to while in ICU. What is the point of forewarning anybody? The only alternative they have is to die. In addition, evidence suggest that most patients / families have very poor understanding of end-of-life / ICU care. Most of them think (or want to believe) a 90-year-old with multiple medical problems who suffered cardiac arrest with prolonged resuscitation and now has multiple organ system failure will walk out of ICU in just few days, live independently and play golf. And you want me to discuss the peculiarities of ICU delirium with this crowd? Give me a brake! By the way, most of the unnecessary / futile care in the ICU is delivered by family insistence / not by (and frequently against) the intensivist’s choice.

  • Noni

    “At one of the nation’s most reputable New England hospitals…” I wish authors would name these institutions. Perhaps then the hospitals would take some initiative to make changes; nothing’s worse than bad press.

  • PoliticallyIncorrectMD

    I don’t teach public health at Yale. I don’t blog on Forbes. But, perhaps I can offer another perspective – the one from the tranches. Most of us, mortals, here on the frontline deal with disasters. Few dozens at the time. Many of our patients are in their 70′s and 80′s. Many are in poor health and have multiple medical problems. When they get to us they are more dead then alive. We work in the dark as, in the beginning, we don’t know much more than we do know. Nevertheless, we manage to get many of them through, while adhering to the most up to date standards of care. Most of our patients have families and all families want instant updates on the condition of their loved ones. But perhaps some deviations form the etiquette, some delays in conveying non-vital information and some triaging based on one’s condition can be understood and accepted, given that we are in the war zone (which may not appear as such from an academic office at Yale). Perhaps it is the public expectation that needs to change – just in my humble opinion.

  • petromccrum

    This is business as usual in every hospital that I have been in. Even worse are the direct lies that patients and families are being told. You don’t have to be elderly to be in this situation. My husband was 53 years old and we encountered lie after lie, incompetence, no communications what so ever, etc, etc.

  • SarahJ89

    I was exhausted just reading this.

  • Kaya5255

    I think I’m hearing again the age old issue of poor customer service in healthcare.
    If you hired an accoutant or a lawyer and were treated in the same manner as the ICU customer, would you be happy to pay a mega-thousand dollar bill? I suspect not!!!
    Criticism, no… just the simple expectation that highly educated professionals will do their job and do it to the best of their ability. And the article clearly demonstrates the system failed on many levels.

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