One Event, Two Stories

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I recently had a patient of mine undergo surgery to remove his gallbladder due to acute cholecystitis. He’d been out to dinner with some friends and had started to feel nauseated, then developed some right upper quadrant abdominal pain that necessitated ending the evening early. After a sleepless night, a morning episode of vomiting, and developing a fever, he came in to see me. I made the diagnosis, called a surgical colleague, and his gallbladder was taken out later that afternoon.

Afterwards, I talked with the surgeon, who reported the operation had gone well, with almost no blood loss. The gallbladder had looked “as if it was about to burst,” suggesting they’d gone in just in time, he said. It had been filled with pus and the surgeon considered the whole sequence of events “a real save.”

When I went to visit my patient in his hospital room, however, he painted a much different picture. He was extraordinarily grateful to be alive and to all of us who’d worked in concert to bring that result about, but what he was mostly focused on was how awful his minute-by-minute experience had been.

He’d been in terrible pain, he said, while in the ER waiting for the surgical team to come down and evaluate him. The ER doctors had given him pain medication that had dulled the gallbladder pain to tolerable levels, but the ER gurney, he said, had been incredibly uncomfortable. He’d had to wait in recovery for an hour before they’d gotten his post-operative pain under control (after asking a nurse several times to dial up his morphine, as the doctor had written she could do). He’d also had a terrible itch between his shoulder blades he was unable to reach himself and couldn’t get anyone else to scratch until he’d gotten his nurse’s attention for the pain issue.

When he’d finally been cleared to leave the recovery room, he’d been all but forgotten about for another hour until his hospital room was ready. He’d wanted to know the room number so he could text his wife, who’d had to leave the hospital to pick up their two children and take them from school to their grandparents’ house, but no one seemed to be around who knew.

Finally, when he’d arrived to his room, he learned he couldn’t eat anything (nor even drink water) until he started passing gas (a sign that the bowels had awakened sufficiently from surgery for him to tolerate food). Though he understood the reason for it, he hadn’t been warned about it and had been anticipating having a full meal once he felt hungry.

As I listened to his litany of complaints (all offered hesitantly: he wanted to make clear he realized these were small things given how close he’d come to death), I realized what a gulf existed between his caregivers’ goals for his hospitalization and his. Certainly, everyone involved had the same big-picture goals: for him to emerge alive and well. But not having been through the experience with him, his providers didn’t—and perhaps couldn’t—appreciate how much the little things he complained about affected his experience. He himself said he was willing to tolerate those inconveniences for the good outcome he got. But, of course, he didn’t get the outcome because he paid the price of those small inconveniences; they came because health care professionals who cared for him didn’t know exactly what the subjective experience of the illnesses they treated was like. If they had, those inconveniences would have become far more important for them to prevent.

Certainly, health care providers are incredibly busy practicing medicine and worrying about their patients’ health. And increasingly, I’m pleased to report, they’re worrying about patient experiences in the health care system as well. But good outcomes often come on the heels of horrible experiences—or just suboptimal experiences—that if health care providers were only more concerned about, could be significantly improved. Hospitalized patients really care that they have to wait thirty minutes before getting some water, or an IV changed, or a question answered. There are clear reasons for why the customer service patients often get is suboptimal, and it’s rarely a lack of caring on the part of caregivers. Providers are, in general, horribly overworked, and overworked people typically prioritize—which means, by definition, less important issues get pushed to the bottom of the list. And when the more important issues are matters of life and death, aiming to provide good customer service often finds itself playing second fiddle.

But more and more we’re recognizing that dissatisfying minute-by-minute experiences not only have as much, if not more, influence on how patients rate their overall experience than the health outcome itself, but also influence the recovery itself. Which is how a surgical team could consider a hospitalization entirely successful in every way, focusing as they do almost exclusively on the medical outcome, while the patient, though grateful for such a positive outcome, could decide never to visit the hospital again and complain bitterly about their experience for years (even while acknowledging the outcome was good).

My patient didn’t go that far, but he and I did converse about the details of his hospitalization for a good forty-five minutes and in that time didn’t touch on a single issue related to his medical care. We talked about empathy, kindness, and a willingness to make others feel comfortable in small ways. And what I realized afterwards was that small things often add up to produce a far greater impact than any of us realize.

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  • Maybe it is different for men and women. As a woman, the times I spent in a hospital were as short a time as possible, with me wanting to leave. During my longest hospital stay, a nurse hugged me. I was feeling like I wanted a shower after a few days without one. When she hugged me, and knew how much I needed comforting, it was a gift of such magnitude I still can feel it today, ten years later. For people who are not used to being in a hospital, not working in the medical field, the distractions in a hospital are nerve wracking. Your patient’s list may sound petty to some people. It is comforting to me that you took so much time discussing your patient’s list of complaints.

  • I love this post; as you know, I’ve started to think in earnest about this issue since at least Jan 2010. It doesn’t surprise me that the hospital in question (though to be fair, this story could occur at any hospital I’ve ever set foot in) could do both a competent (indeed, perhaps lifesaving) job but bungle the small details that put a patient ill at ease.

    —Dr. John

  • Alex,

    Another good post and great insight as always.

    This reminds me of an experience I had when I was trapped in the elevator at work for 30 minutes a few years ago. After I picked up the emergency phone in the elevator to report the elevator had stopped between floors and I was stuck in it, from there the situation was handled straightly as but a mechanical problem. The electricians were called in and eventually the mechanical problem was fixed and I was freed, but not once during the whole time anyone cared to check if the human person inside the elevator was doing OK. I called the HR management person to express my thought on how it could have been handled better but that just fell on deaf ears.

  • One year ago I had a total hip replacement on my right hip in Costa Rica. I have a home in CR and also had private insurance. The surgery was done in Cima Hospital in San Jose. I speak Spanish poorly, but enough to get by. Other than a laproscopic hysterectomy 7 years ago, I’ve never had any type of surgical procedures…ever! And I was 56 years old. The hospital was immaculate, the staff very kind and helpful. If I had a problem communicating, they would find someone immediately who spoke a little more English. The experience was very positive and the surgery a success. I was surfing again 6 months post op. Sometimes it’s not that the staff or the hospital is run poorly but just unfortunate circumstances at that particular time a person may be in the hospital. When my mother died in a hospital in Florida, I was with her while she was dying and rang for someone to come in…not to help resuscitate her, but merely to acknowledge the death. No one ever came. I had to walk out to the nurses’ station and interrupt someone (they were ignoring me because it was 7:00 and they were changing shifts) and ask someone to please come to my mother’s room and confirm her death. It wasn’t a bad hospital, but an unfortunate circumstance.

  • I have never had what could be called, caring, compassionate care in a hospital, except for one time, at Cedars-Sinai, in LA. 20 years ago. I was hemorrhaging (almost to death) and the triage nurse was there with me, comforting me thru my fear that I was about to die. I have been hospitalized three times (c-section, food poisoning, miscarriage) and two of those times the nurses and doctors (when they showed up) showed a shocking lack of caring or interest. A patient is at their most vulnerable place, in pain and scared, so for the nurses or doctors to show the smallest kindness or consideration would be appreciated on a grand scale. It’s not that hard to peek into the patient’s room and tell them that the doctor has been delayed and will be there shortly, or to give them an update when stranded on a gurney in a hallway. It’s not rocket science.

  • My dad had colon cancer surgery five years ago. Luckily it hadn’t spread beyond the colon. But he was naive about his hospitalization after the surgery. He thought he would be “in and out,” but of course that wasn’t the case. While he had a great, attentive and caring nursing assistant there were times I was visiting where he requested assistance and no one came for at least 15 minutes … unacceptable! It seemed to be no problem for the nursing staff to clean up after he soiled his bed, but they couldn’t seem to be on hand to help him from soiling it in the first place … his pride was hurt, his sense of control was hurt, he cried one night. Everyone who is hospitalized needs an advocate who is present at all times to make sure needs are met in a timely manner … not to harass the medical staff, but to remind them that they are the care takers whom the hospitalized rely on … that they can make or break an experience. My dad will probably avoid any hospital stay in the future regardless of medical need … I don’t blame him.

  • I appreciate both sides of this situation.

    For every patient that has an unanswered question, a leaking IV, hair that needs washing, an itch, an unmade damp bed, a cold meal, delayed pain control, someone who is unable to answer the phone on their own or a door that needs closing for privacy—there is staff that needs to prioritize.

    Some patients are so stoic and don’t want to bother anyone at anytime—that they never EVER speak up when it is so obvious immediate attention is required. Others are so sensitive that their needs are better being attended to before agitation/irritation and anger becomes full blown.

    Healthcare providers might take a moment to understand each person’s personality type (if we had the time to do so) but mostly it’s intuitive. I have learned when one of my patients is irritated to ask, “What can I do to make it better right now?” and I apologize for any misunderstanding. If I show I am willing to reach a solution it puts everyone at ease.

    However that being said I still don’t have time to go to the bathroom, have my meal/break, do timely documentation, ever leave on time and often go home wondering what i could have done better.

  • As a veterinarian I learned this late in my career. For years I had treated something called founder where the horse is in severe pain and a lot of outcomes are possible including death. I would treat them, dispense medicine and occasionally talk or see them again but frequently not. Then several months later I would see them and ask how it went and it usually went ok but slowly and they were happy because the horse was better.

    Then one winter winter one of my horses foundered and it was a whole different experience with daily frustrations and symptoms all over the board. Eventually the horse got better but I learned that I and you, the doctor, should live through every disease so you know how it affects the owner or patient instead of popping in, treating the patient and out the door to the next one assuming it will get better. They usually do but to live through it was a real eye opener.

    So try a gall bladder operation some day.

  • In the process of saving your life/making you well, medicine makes you helpless. You have to turn yourself completely over to the hospital/medical routines. You are micro-managed as if you were in kindergarten. You have to ask for permission and then ask for help to go to the bathroom, to take a drink of water, to sit up, to walk. Hospital workers are free to come into your room at any time and interrupt you, your sleep. Incidents that make you feel powerless add up quickly. The experience is anxiety-producing and humiliating.

    The rules of the game are meant to do volume business efficiently. As you say, Alex, doctors, nurses, IV teams, cafeteria food services are overworked. They cannot individualize care. (And until they become aware—often only after a personal experience in the hospital—of how patients feel anxious and humiliated and powerless, they cannot change their approach.) What used to be known as good hostess skills are regarded as trivial to job performance in the hospital.

    Once you put yourself into the hands of your medical team, you have bought the whole package. You cannot pick and choose which services you want, nor how long you want them. You are captive. You are in someone else’s territory.

    The story is a little different with respect to pain management. Pain is now the 5th vital sign and cannot be neglected by medical personnel. It is unethical to neglect pain.

    I think you are pointing up the fact that generally medical care is NOT holistic, not concerned with the whole person. Your patient was “the gallbladder” in Room X.

  • The 45 minutes you spent with him won’t erase what happened, but you SAW him and listened. That’s something he will remember and talk about.

  • I recently had parathyroid surgery. It was scheduled for 11:30 am and I was told not to eat or drink after midnight before the surgery. The surgery before mine ran into complications, so my surgery was delayed. They finally began preparing me at 2:00 pm. By then I had a headache from hunger. When they tried to insert the IV they discovered that my veins were flat from dehydration. I had bruises all over both arms from the numerous attempts to insert the IV. They were finally able get the IV in and I had the surgery. Unfortunately, the surgery was not successful and I am facing the prospect of another surgery once my body has healed. This was at a very prominent and well regarded hospital in one of the nations top medical centers.

  • All of us in healthcare came to it in order to help minimize suffering. I believe every one of us, if given the time, would be much more compassionate and work on preventive measures to ensure a good patient experience. Unfortunately, with the current climate in medicine, the nation, the hospital the singular effort is in cost cutting. I think this impacts the patient experience most notably in nursing staffing. Shift coverage is calculated so that as few nurses are present to cover the most number of patients, 1:2 in ICU, 1:4 at times on the floor. If one of these patients becomes more critical, the other(s) suffer in their care.

    Even if they are all stable, imagine doing a complete head to toe assessment, changing bedding, getting meds every 1-4 hours, hanging IV fluids, blood, checking vitals, IVs, drains, administering new physician orders, etc and documenting it all in 3 places for 4 individual people in an 8 hour shift. If a new patient is admitted it takes an act of god to get a nurse called in from home to cover that bed. This results in patients waiting for hours in the ER until the next shift arrives and staffing can accommodate. It’s sad, and some would say unacceptable, but yet it is policy from the top down. This all leads to nurse burn out and good nurses sacrificing quality bedside care to just get all the boxes checked and the quantified work of the day finished.

    Empathy, compassion, emotional well-being; these things are NEVER discussed in the countless meetings about efficiency, affordability and safety but I would argue they are just as much a part of a QUALITY health care system as the latter.

  • I enjoyed this story and especially the message it conveys. Right now in particular, I am relating this to a difficult time I am having with something going on in my life—a significant breakup of my relationship that wasn’t expected or warranted. Your point on empathy and kindness and willingness to just try to help someone in pain makes all the difference in the world to that one person. It isn’t about expectations so much as the experience. The experience is what stays with you and affects the process afterward-healing, closure, etc.

    And when you state “small things often adds up to produce a far greater impact than any of us realize,” this is on point for me because I am an empathetic, compassionate, giving person and all I look for is to get the same in return when I need it most.

    Unfortunately, not all people are capable of this which is sad. Life’s difficult experiences would be much easier to bear if we all could show this to others and take care of one another. There will always be a “someday” when each of us will need this.

    Sorry if this is a bit cryptic but hopefully you get my point in this….

  • In 1991 I was admitted to hospital with a small bowel obstruction and went through much testing to rule out ovarian cancer. A lower GI series was performed and, unfortunately, I couldn’t retain all of the barium mixture and I soiled my gown on the exam table. In my wet gown I was transferred to a gurney where I stayed, very cold and wet, for what seemed like a long time. I asked passing staff to be returned ASAP to my room so that I could be cleaned up and gown changed, to no avail. I eventually rose from the gurney, wrapped the sheet around myself, walked to the elevator and took it to my floor and bed. After this episode I was laughingly referred to as “the walker.” Today I can see the humor in my situation but it still makes me angry!

  • Get used to it—it’s only going to get worse—patients don’t understand that the economics driving this will transform hospitalized health care into the next airline industry—very safe and efficient but impersonal and uncomfortable, all this at a time that providers must work harder, see more patients to make less money…in a macro sense where do patients think hospitals are to get the money to expand not contract staff, retain RNs instead of replacing them with much less educated techs, practical nurses etc ?

    In 20 years we will have a British hospital experience for those who have had the pleasure to be hospitalized in the NHS system—good docs, run down facilities, no amenities

  • Based on all-too-extensive experiences with my hospitalized parents, it is obvious to me that the priorities set by the people who manage hospitals intentionally put the patient last. But they really can’t be faulted for that, since they’re merely responding to the demands of the rest of the medical system.

    If it’s a for-profit hospital, the executives and shareholders (in that order) are at the top of the list. And even if it’s non-profit, the first priority is running an efficient “medical factory” that maximizes resource utilization and throughput while minimizing cost. The bureaucracies of Medicare and dozens of private insurers demand that, on the pain of sanctions or loss of revenue for failing to meet metrics.

    The overworked staff are thus under constant pressure from their bosses to put priority on paperwork. So for the nurses supposedly responsible for patient care, “patient care” means spending most of their time typing into computers, to satisfy the insatiable demand for data needed by insurance companies, auditors, lawyers, and the bureaucracy of the hospital itself. Since their own performance is evaluated by the completeness and timeliness of the charting data, they have every incentive to make that their top priority. The patient is something that gets in the way, something preferably dealt with during planned breaks from charting.

    If a patient needs something unscheduled, the response too often is angrily rolled eyes. That threatens to get them further behind on their charting, which will incur the wrath of their bosses and jeopardize their performance measurements that define their quality of care. They’ll first call in a nursing assistant, since direct patient care is delegated whenever to these lower-level employees so that the expensive trained nurses can devote themselves to the much more important task of charting. If an assistant isn’t available, or the problem is something they can’t handle, the nurse will of course grumble and try to address the problem in the most expedient and perfunctory fashion. For every minute spent at the bedside is a minute away from the critical task of charting. And they’ll have to spend even more time catching up when they get back to the computer.

    The irony here is that all the charting and auditing is supposed to ensure quality care for patients. But it ends up metastasizing into gratuitous checklists and record-keeping that take time away from patients and reduces the quality of care (a reduction that the auditors can’t see because they’re only comparing charts against their checklists). And all the “managed care bureaucracy” is supposed to provide cost-effective medical care. But it surely ends up incurring unlimited costs that, again, detract from care. If you have a system that tracks each aspirin tablet, that tablet will cost $7 to pay for all the labor required to track it, none of which provides any patients with health care.

    So of course the complaints you describe will remain unheard. (And Alex, I don’t know how you get away with spending 45 minutes talking to a patient like that. You’re not getting paid for it, since insurance companies consider it entirely unnecessary.) There’s no field in the electronic charts for any of it. It’s not on any Joint Commission audit checklists. Insurance companies aren’t interested. So it’s not a priority for anyone, and can even be dismissed as irrelevant. As long as the charts are timely and complete, the insurance company clerks don’t deny payment because of incorrect or incomplete billing, and the audit checklists are filled in with good results, the hospital executives will tout the Excellent Quality of Care and give themselves well-deserved bonuses.

    Some people might think something’s wrong with this picture. But they can be ignored as long as the Official Numbers (which completely ignore the patients themselves) add up to Excellent Care.

  • PS to Kathy—parathyroid surgery is quite unpredictable re: results even in the best of hands and even with intra-surgery PTH testing available—what was missing in your experience apparently was surgeon did not emphasize—or you missed—that redos are common if they don’t take out the gland/s that were causing your elevated PTH—they try to err on the conservative side rather than take out too much leave you with minimal/no PTH—I’m sorry for tour outcome but it certainly does not reflect badly on the technical aspects of your care although communications can be faulted here of course.

  • I will add that in any situation I have had personally with anyone in health care (with myself as the patient) that the ONLY thing I remember is touch. A hand over mine, a touch on the shoulder. A warmth/comfort that I have remembered for over 40 years. Like it was yesterday. Amazing.

  • I was interrupted while typing my comment, and came back to find that Hapgood has done all the hard work for me.

    When you say, Alex, that there are “clear reasons for why the customer service patients often get is suboptimal and it’s rarely [due to] a lack of caring on the part of caregivers. Providers are, in general, horribly overworked, and overworked people typically prioritize….” you are certainly correct. But, as Hapgood points out, the reason for the priorities being what they are is the design of operating systems that are structured so as to accommodate existing—and unexamined—ways of doing things.

    This is is usually, again as Hapgood points out, because the people in power have made financial criteria paramount. But another aspect of the problem, one that may be responsible for the persistence of systems that yield frustration to patient and worker alike, is the failure of management to revisit the basic purposes of an institution regularly and consider what structural changes might be made to organize care more effectively.

    Obviously, there is a tremendous disincentive for for-profit and non-profit institutions alike to break out of habitual ways of doing things. It would involve thinking, for one thing, and nobody gets paid for that. Instead, they hire paid consultants to tell them what to do and these consultants, like the auditors Hapgood mentions, don’t see anything if it hasn’t already made it to their checklists.

    The failure of hospitals and other institutions to make thinking and finding out from others who have thought—even if they aren’t so-called “experts”—as significant as the bottom line is crippling the overwhelming majority of institutions today.

    To Sara, my heart goes out to you and all who are motivated by compassion and find yourself caught in the gears of a system that does its best to trample the impulse. It’s a really hard place to be.

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  • Over the past 60 years, I have had a variety of experiences as a hospital patient. Most were good, but a few not so. Only once was my experience so unpleasant that I told my doctor I’d find another doctor before I would return to that hospital. Here is what happened:

    It was a new building, open only three months at the time, a beautiful facility that was undergoing some shakedown problems. I had a simple procedure, but had to be in the hospital overnight beforehand and overnight afterward. To avoid missing a lot of work, I skipped lunch on the day of my admission, counting on the hospital having the usual early dinner hour. A friend dropped by after work and distracted me until about 7:00 p.m. when hunger pangs got my attention, and I went out to the nurses station and asked about dinner. Oh, yes, dinner had been served about 5:30. Didn’t I get any? She could get me a sandwich if I liked. She brought me a sandwich and a glass of iced tea (I can’t drink tea.) My friend and I raided the hospital’s machines for junk food. (PROBLEM #1: No real dinner.)

    At bedtime, when I got into the shower I found a large wad of black hair covering the drain. I wiped it up with a tissue, but it was really gross. (PROBLEM #2: Dirty shower)

    When I got into bed and stretched out, my feet touched something clammy. I pulled back the covers and found that the bed had been made up so that the bottom sheet left about 2 feet of the rubber sheet exposed. I remade the bed properly. (PROBLEM #3: Improperly made bed.)

    The next morning I couldn’t have breakfast before the procedure, but I was supposed to get lunch. However, I was terribly groggy and couldn’t stay awake after they brought me back to my room. I was only vaguely aware when someone came in to check my blood pressure. About three o’clock I woke up dying of thirst. My “setup”—water pitcher, glass, etc.—was still in a plastic bag by the sink where the “Pink Lady” had left it the afternoon before. I staggered to the sink and drank some water out of my hand, went back to bed and back to sleep. (PROBLEM #4 no lunch, although I wasn’t thinking of it at the time. PROBLEM #5 No bedside water—it never was set up—and no one was ensuring that I stay hydrated.)

    I woke up again about six o’clock. Starving. My last real meal had been breakfast the day before. I went out to the nurses station. “Oh, dinner was brought an hour ago. I can get you a sandwich . . .” I again was brought a sandwich and tea I couldn’t drink. (PROBLEM #6 The kitchen apparently had not been told of my existence, even though I had been in the hospital more than 24 hours.)

    The next morning, after I made sure I got breakfast by stalking the hallway outside, the hospital’s ombudsman came by and left me a form asking about my experience. I filled out the form, saying that I knew the hospital was still working out kinks and perhaps they would like to know of the kinks I had experienced. I describing the problems detailed above. I was not angry; I was really rather sympathetic at that point. It was a beautiful hospital and well designed. (For example, patients’ rooms circled the nurse’s station so that every room was in view of and only a few steps from the nurses.) And I thought when such care had been taken to plan the hospital, the hospital staff would want to take equal care to make it run well. Until about 10 days later, when I received a letter on the hospital’s letterhead. It was from the ombudsman. It was a cold, unsympathetic letter:

    No food? “I understand you were brought food when you requested it.”

    Rubber sheet exposed? “That was an infection control measure.”

    The other problems were ignored, and nothing was said about the hospital working to prevent any of these problems in the future. I got the impression that she felt there had been no problems.

    And then I did become angry. Angry that the person who was supposed to be an advocate for patients was instead justifying the hospital’s bungling and not working to prevent their repetition. And I knew I never wanted to stay at that hospital again, where only the architects seemed to be competent.

    I was lucky. I was well when I entered and well when I left. I was not in pain. I had no adverse consequences from the procedure I had undergone. (I’ve wondered what would have happened if I had, since no nurse ever entered my room when I was conscious.)

    And, by the way, that infection control measure? I worked with a nurse who, at that time, had trained most of the infection control nurses in this country. I showed her the letter. She was astonished that they would say that something which actually violated good infection control practice was being done to control infections.

  • Reminds me of the saying, “They may not remember what you said, but they will always remember how you said it.”