Why Can’t We Do Better Than This?

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 Krumholz, MD, SM, is a cardiologist and the Harold H. Hines, Jr. Professor of Medicine and Epidemiology and Public Health at Yale University School of Medicine. He is the Director of the Yale-New Haven Hospital Center for Outcomes Research and Evaluation (CORE) and Director of the Robert Wood Johnson Clinical Scholars Program at Yale. He blogs reguarly at Forbes, where this post originally appeared.

15 replies »

  1. How rare it is that I find specifics that could help the patient get better care! Maybe that source should be publicized regularly for people who have family at a distance? Maybe I should clue my family to this NHS source in case I’m admitted unconscious someday. Maybe I should have an Iphone with the web address.

    And maybe we need more assertiveness and less instant compliance? Maybe we need to teach families and patients how to push harder if necessary?

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  3. Thanks for sharing an iconic example of how health care has evolved into what too often is an utterly dehumanizing experience. I’m sure it saddens you that even your intervention did not seem to improve things for your relative. Recently our daughter was hospitalized for a paralyzingly nerve disorder. In our case the team really stepped up. As in most cases, this required the pt/family to interject consciousness into the minds of clinicians who just don’t “see” us. Once invited to do so, it actually brought them joy to help. (Our collaboration with the medical team also led to our daughter’s remarkable and odds-defying recovery). The challenge – how to institutionalize “consciousness”? http://www.kevinmd.com/blog/2013/08/gratitude-terrified-parent-kindness-shown.html

  4. I truly believe that everyone goes to work to do the best they can for each patient. Unfortunately, the systems in place remain challenging. The regulatory agencies continue to focus on paper compliance, rarely speaking to patients about their experiences and suggestions.
    Yes we have all the buzz words, patient navigators, team planning, and collaborative care councils to name a few …However many positive changes are occurring, an example is how we empower patients through knowledge and support on decisions regarding end of life care.
    Dignity and compassionate care are taking place at the bedside. May all our patients receive competent, compassionate care, while we hold a hand or give a hug for reassurance.

  5. I commend this physician for opening the door for those in the health care industry to re-think a very simple solution. It sound corny, but it works. I have been on both sides of the fence. When I am the person providing education (in my case bereavement education) I always take care of the patient’s and the family’s questions first. If we treat or address the condition only we are going to fail. If we treat the patient and the family as active participants in the process of the care we will be sucessful even when the final outcome is not regained health. Thank you for sharing a story which, resembled in many details the experience my family had in 2010 when my husband suffered a stroke at age 50.

  6. I appreciate that a doctor is willing to write this personal account and acknowledge what it feels like on the other side of the white coat divide. I am a doula and medical anthropologist (I study birth cross-culturally). I was recently shocked at what I witnessed in a hospital when a woman was transferred to the hospital from a planned homebirth. [This is not a story about homebirth, however. This is a story about hospital care.] She was transferred because her placenta had not been born two hours after her baby was born (the baby was healthy and beautiful). The mother’s vital signs were all good. But her homebirth midwife was so concerned about the delay in deliverying the placenta that she urged her to go to the nearest hospital. At that hospital, the ER and the Labor&Delivery floors could not decide which department should admit her. An entire hour was spent moving from floor to floor talking to different doctors and nurses. This new mother was IN THE HOSPITAL for an hour and no one had taken her blood pressure or vitals. Finally she was admitted to the ER. A nurse took vital signs but did not touch her belly. Two doctors came to introduce themselves. After being in the hospital for three hours, not one person had examined her belly or performed an internal exam of any kind. The mother and father were exhausted (they had just delivered a baby!) and were trying to manage breastfeeding, too. Just as mom and baby fell asleep for the first time since the birth, a nurse came in to put in an IV “just in case,” though no one knew when a doctor might try to get the placenta out. After being in the hospital FOUR HOURS, this family called their own doctor at another hospital and decided to walk out of this hospital and drive to the other hospital. They had arrived in a hurry, believing that every second counted, and they left the hospital because no one could tell them when someone might get around to helping her deliver her placenta. She delivered the placenta at the second hospital. But how is the care she received at the first hospital acceptable care in the United States?

  7. I would like to use this example (distressing as it is) in my Professional Nursing Concepts class this week. We are discussing quality health care and this is perfect. Unfortunately this is all too often the reality that we find, it is NOT the reality that as nurse that I accept.
    Assistant Professor of Nursing

  8. This is precisely the reason…a protocol.

    This is centralized helthcare in action. No caring. The outcome is irrelevant as long as you follow the protocol.

    If it turns out badly, then it is not their fault.

    Next case.

  9. I don’t think anyone is ” defend(ing) this abysmal care or blam(ing)e it on some outside influence”
    It is what it is. We (the big WE – everyone) is rightfully concerned with making sure everyone has the best access to the best care in the shortest amount of time for time sensitive things like this – stroke, MI, sepsis etc.. There is not a lot of discussion about how this affects the patient. Period.
    I think education in the middle of the night is pointless. I think that repeat head CTs on a stable patient is pointless, wasteful, and likely dangerous etc….

    I was not even saying I was *sure* this was a protocol, but it sounds like it.

    We can do better, but in order to understand a situation you need to know what is going on behind the scenes and what is going on behind the scenes is largely out of most doctors hands partly due to a lack of leadership and partly due to a lack of time.

  10. You have heard of the iPad,iTouch, iPhone? Now you have the iPatient! Most of the problem comes from our new slavish devotion to hospital EMR systems. Common sense? Sorry, not in the algorithm. Spend 8 minutes with the patient? No, no, no, thats just face time. What about the other 30 minutes the doc spends with the computer AFTER he sees the patient? Where do you think that time comes from? No communication? Orders can be entered remotely in real time responding to minute to minute changes in the patients condition! Its all documented in the computer. As long as the documentation is there why do we need to talk to the patient ? We have recorded our thought process for posterity in the computer. Its all there, but that takes time! These residents have to sign out and turn over these patients to other doctors several times a day. Now THATS communication! Actual communication with the patient is to be discouraged as it will only stand in the way of processing the patient through the system efficiently and documenting a timely discharge so our outcome metrics are in parallel with national benchmarks! Nurse education at 1 AM! You betcha! Wake the patient up to give them a sleeping pill? Of course! Wouldn’t want the computer to score that as a medication error would you? Computer documentation insists that all of it it be performed in a timely fashion. Physicians and nurses in the real world now spend more time with the “iPatient” than they do with the actual real patient. Please don’t stand in the way of improved outcomes, efficiency, cost savings and improved patient safety with your petty complaints. Waiting until EMR’s were sufficiently advanced that they improved the physician patient experience until implementation is absurd! Perhaps if someone did a time motion study and saw how much time these computer systems take away from direct patient care, all those talking heads in ivory towers would get it. BTW, c’mon pretty hard to believe that one of the nations most reputable hospitals does not have a radiologist to read head CTs at night. Really?

  11. Just to be clear, Dr. Krumholz is to be commended for bringing this tale here. It is physicians who are willing to talk about these things that can make a difference. Even if it takes a personal rather than professional exposure to the situation.

  12. We can always count on some commenter, usually a physician, to either defend this abysmal care or blame it on some outside influence. If only we left the system alone and trusted each individual clinician to do the right thing. “Enough with all these protocols and checklists”.

    This story is repeated every day, I have seen it myself. There is no excuse for it, especially given what is at stake, not to mention how much we pay for it. What other service would we expend tens or even hundreds of thousands of dollars for that we would accept this? It’s abysmal and we can do better. But the medical profession will need to lead the way. And unfortunately we seem to have more doctors with excuses than leadership.

  13. I suspect a “stroke protocol” is at work here dictating all the necessary care to ensure “compliance” with NIH stroke guidelines in order to be a “Certified Stroke Center”. There is no thought to these outside the quarterly/semi-annual/annual meetings to ensure these protocols are up to date.
    There is no option in the algorithm for patient with a brain bleed who is clinically stable to opt-out of the scan. IT is imperative (for whatever reason – payor, CMS, lawyers etc..) to “document” the volume of blood in 3D not to check the patient to see if they are better.

    This is *A* logical endpoint to checklist medicine – we NEVER miss anything and as such you are treated like a Boeing 737 at takeoff. Check.

  14. This stuff happens every day. People trust the system to work and don’t know what to do when it doesn’t. Your family members pushed back a little – good for them. Every patient has to have an aggressive advocate.