Grand Rounds -- When things go awry

Welcome to this week's edition of Grand Rounds, the weekly rotating carnival of the best of the medical blogosphere. (The host next week is Leslie at Getting Closer to Myself.) Our theme draws on my desire to encourage greater transparency in the delivery of clinical care. In the spirit of Dr. Ernest Codman, I asked doctors, nurses, and other providers to write about incidents in which they made or were present for a medical error. What were the circumstances, and what did you do in response to the situation? How did you feel about the event, and how did it change your practice of medicine afterward.

Likewise, I asked patients who have been the victim of, or loved-ones who have seen, clinical harm to tell their stories. How did your provider(s) respond, how has the event has changed your view of the practice of medicine, and what advice you would give to the profession?

I had lots of responses -- with great appreciation for focusing on this topic. Some people who do not write blogs submitted essays. While this may violate the rules of Grand Rounds, I include some excellent examples.

To set the stage, I start with a lovely essay by Cherie Abbanat, an instructor at MIT. It illustrates the long-lasting fear that comes from an adverse medical experience, but it also shows how the kind ministrations of the next nurse or doctor can make up for that experience and leave the patient healed in several ways.

General Grief
I'm 17 years old and I just found out that I have to have my wisdom teeth out. “It's no big deal” says the dentist, “but all 4 of your wisdom teeth are impacted so you have to go to the hospital to have the procedure done.” “Oh, also,” he adds, “that's the only way that insurance will pay for it.”

My mom's an RN and assures me that the general anesthesia I have to have is really not a problem. I think of it as a kind of adventure. After all I've never been “put under” before. I'm hoping I won't be “put down” in the process.

Off to our local hospital I go for the procedure – that was the hospital where the dentist practiced and I didn't question the choice. After all, I was born there.

The needle went in fine, the mask was placed over my face, and I remember trying to count backwards and not making it very far. Why count backwards when I couldn't even probably count forward? My mom was smiling the whole time.

The next thing I know I am waking up and I want my mother. I mean, I really want my mother. I am crying and calling for her. Of course, no one can hear me because my mouth is packed with gauze.

She is not coming and I'm getting more anxious.

The next thing I know the anesthesiologist comes to my bedside and asks me “Do you remember anything about the procedure”. I look at him incredibly and it all comes flooding back....

I'm on the table, they yank and then they yank again. The pain is so strong, I can hardly take it. Left side, top tooth is being ripped out of my jaw. My jaw resists. It doesn't want to let go. The dentists don't care, they are going to get it out of there one way or another.... I groan, I try to move... everything goes blank.

After I finish telling my story, the anesthesiologist politely gets up and walks away. I never see him again, never!

My mom finally comes to get me and tells me that I slept much longer than I should have and she can't figure out why. I was there an extra two or three hours. I know why and I tell her. She seems concerned. I just want to go home and take some pain drugs. Turns out I'm allergic to codeine, and I break out in hives as a result. Also, I lose feeling in my chin because a nerve was damaged when they ripped the tooth out of my head. I can never feel my chin normally again. I'm a mess of bruises, hives and I take longer than it seems necessary to heal.

It's 2008 and January and cold. I'm on my way to have my gall bladder out at Mass General. I'm nervous. This will be my second experience with general anesthesia, and I'm not looking forward to it. I think I'm better prepared, though. I tell them I'm allergic to codeine. I tell them about my experience and no one seems that concerned, but I am. I really am. Then I meet an elderly RN. She explains that she will not use the computer when she talks to me because she thinks its rude. She listens to me tell her about my experience. She touches my hand and says, “That was not a good experience for you. That shouldn't have happened. How are you feeling about this next surgery?” I start crying and tell her my fears. She listens, she really listens. I feel heard, finally.

I'm on the table and I'm about to be wheeled in for the operation. My feet are cold and I wonder if they will make sure my feet stay warm. The nurse gives me warmed blankets and I feel more relaxed. I can't believe they are pre-warmed. It makes such a difference and helps to calm me down.

The man I've been waiting for shows up – the anesthesiologist. Actually, there's a team. I tell one of the doctors, Mark, my story, but I'm calmer. Mark shows me a device and says, “We have this new device that I will put on your forehead to monitor your progress under general anesthesia. It's okay,” he says “I'll be careful.” Then he asks me where I teach and I tell him MIT. I also tell him that I know that what he is doing is not an exact science. He laughs and acknowledges that this is true, but then tells me, “I was in Course 7 (biology) at MIT.” This relaxes me because I'm laughing and we talk about the MIT undergrad experience. The moment arrives. The needle goes in and the mask goes on. Mark says, “Okay, Cherie. Time to sing the MIT fight song with me, ready?” I laugh and start to sing, “E to the U du dx....”

I'm at home recovering. I'm sore, but okay. I never felt a thing. The phone rings and it is Mark. He wants to know how I am. He apologizes for not coming to see me after the procedure and tells me he just wanted to make sure I'm okay. I smile and we talk awhile. I tell him how glad I was to have him with me through it all. I thank him for his work and for the call. It means so much.

Next we turn to another story from Dr. Val Jones. It presents the sequence of error, disclosure, apology, and change in process that dramatically lowered the probability of a similar error in the future. It is entitled, "What to do when mistakes happen." A key component of the apology, noted by Dr. Val, is the sincerity displayed by the provider. "The rehabilitation medicine attending notified the family of the error, explained exactly what happened and apologized with tears."

Laurie Edwards builds on this theme, ending her post on A Chronic Dose, with this thoughtful summary: Every profession, every interaction between people presents an opportunity for errors. Obviously the stakes are usually much greater when it comes to medical errors, but the basic rules apply nonetheless: Treat people with dignity and respect. Focus on fixing the problem appropriately and moving forward. Be forthright. Sometimes the hardest thing to do is simply say “I’m sorry.” Yet for (non life-threatening) errors, those two words can mean the difference between a blip on the proverbial radar screen and an event that damages trust and fosters resentment.

The Samurai Radiologist agrees, at "Getting the finger from a patient." Telling the story of a diagnostic imaging error and apology, he concludes, "Admitting mistakes to patients is not yet a universal practice, but it sure felt good this time, to me and my patient."

White Coat uses his experience from another part of life to illustrate that sometimes patients get it wrong. What appears to be an error is not always an error: I encourage you not to just create the label "error" but rather to explore whether an "error" is really an error at all. It's good that you are exploring the issue, but I think we have to define the issue before we can get a handle on it.

Expanding on this, he offers advice to patients:

When there is a bad medical outcome, or even when there is the perception of a bad medical outcome, the natural tendency is for patients to assume the worst. The patient with the bad outcome then discusses his experience with others, and may be provided with misinformation. Enough misinformation and pretty soon the patient is all worked up - maybe for no reason.

Not saying that bad outcomes never occur from someone doing something wrong.... Just saying to make sure you’re well informed before making that decision.

But Barbara Kivowitz submits another post that reminds us that there is another type of harm, "The Harm of Omission". An excerpt:

The harm of omission I experienced was grievous and insidious. It took a long time to recognize its existence and impact. And there is no one to blame.

The harm of omission lives at the core of the structure of our health care system. It is that there is really no organizing structure. There are separate disciplines each with its own language, expertise, methods, values, and staff.

Maybe this is what Bongi has in mind in his post, "Surgical principle number 2: Fear nothing but fear itself." But I have a feeling that this is not what Barbara meant exactly!

And Alvaro Fernandez expands the scope of today's topic a bit more, in a post entitled "Therapy vs. Medication, Conflicts of Interest, and Intimidation." He notes that harm can result when researchers mispresent and misreport studies' results, when medical journals don't disclose the obvious conflicts of interests by those researchers, and when, in his view, JAMA tries to stifle appropriate criticism of those two points with intimidating tactics.

And, likewise, Amy Tenderich expands our scope with a discussion of the harm that is caused by a company's mismanagement of a useful product.

Before returning to more serious matters, let's take a short interval with a slightly mystical story from Chris Nickson (aka precordialthump) entitled, "The Mark of the Beast." I'm sure it has something to do with today's topic . . . .

Now, back to traditional care delivery, Lisa Lindell wrote a book entitled 108 Days about the following experience. She passionately draws some strongly held conclusions:

My husband was hospitalized for 108 days with severe (35% tbsa) burn injuries on March 5, 2003. I'm an accountant with no medical background, humbled and grateful that he's going to be cared for in such a prestigious institution, renowned for their burn unit. I was there to keep him company, distract him from his pain, and stay out of the way of the medical staff and bend myself to their will and guidance regarding his recovery. I was genuinely and sincerely grateful and humbled. Comforted just in knowing he was in "the best" place he could be.

108 days later I miraculously got my husband out of that hellhole, documented the ordeal in a book, and embarked on a patient-safety crusade that has cost my family dearly. Emotionally, financially and physically we have sacrificed to get this much-needed focus on quality care in a crusade that is still going strong 6 years later. A battle that has become a war with an army of medical-error victims just like me, connected by the Internet and spread across the country. We're all terrified of the day we ever have to encounter a hospital stay again. We're driven by fear, pain and shame for our medical community. We're not driven by rage at some doctor as many of you define us.

What did I learn? Physicians have very little notion of what's actually happening at the bedside. That's not a criticism, just a fact. I learned any person ever admitted to a hospital needs an advocate at their bedside 24/7, an advocate in a friend or loved one. I learned my role and job as his wife wasn't to "keep him company" or stay out of anybody's way, but to save his life, with or without the co-operation of the professionals. I learned, in hindsight, my husband nor myself were never viewed (by staff at the hospital) as fellow American citizens, people with lives and jobs and children and a home and a life.

My advice? Advocate for your patients. Abolish "visiting" hours. Put your patient first. From the CEO to the housekeeping staff, everyone can be, and should be, a healer. Give the medical profession back their dignity, respect and trust that the public used to have for you. You have to earn it back. By being honest and forthright, by telling your lawyers and insurance companies how YOU practice medicine, not the other way around. Join or become a PSO (Patient Safety Organization), demand that PSO's be mandatory, not voluntary, and demand patient feedback be part of the process. Listen to your patient, don't ask them how they liked the food, ask them how many times they saw their physician today. How many times they saw a nurse during the night shift. Listen to your nurses. Staff your hospitals with a safe nurse-to-patient ratio, stop overloading nurses with chores and duties that have nothing to do with patient care, but have been given priority status over actual patient care (paperwork, inventory, secretary...the list never ends). Fund a patient safety organization. Include patients on boards, medical boards, oversight committee's. Stop hiding from and lying to us.

Duncan Cross provides similar examples based on his own care in, "When Errors Attack," and then also provides plainspoken advice to doctors and patients. He concludes:

My advice to providers: listen to your patients. I think the inability to listen is symptomatic of a bigger problem in health care, that patients are taught to think of themselves as subordinates in the physician-patient relationship. I’ve written a lot of posts against that attitude, and usually my point is that it’s bad for patients. What should be obvious from this post is that this attitude is also bad for physicians; a patient who isn’t allowed to help his doctor can’t help that doctor avoid serious mistakes. How physicians might cultivate more equitable relationships with their patients is a different post, but learning to listen - and listening to learn - is a good start.

And Robin, who has a chronic condition, adds her own story about a doctor who was unfriendly and antagonistic and unhelpful, and another who apologized for him. After she complained about the first one, she "asked my good friends if I was over-reacting. I asked my parents the same thing. They assured me I wasn't, but that's what chronic illness does. It beats us down to the point we are almost apologizing for being ill, and then when we do react...well, we second-guess our reactions."

Rocky Samuel is a student at Harvard Medical School, finishing his third year. He sent a reflection piece that he wrote in response to an adverse event that he witnessed. While a later review showed no indication of medical error, his insights could apply in a variety of circumstances. Here's an excerpt:

The mood on labor and deliver was unwaveringly joyful, until the unthinkable happened; a mother died in labor. Just writing the words “a mother died in labor” brings back a flood of emotions. On labor and delivery, there is almost always a happy ending, and if there is a bad outcome, it is never a surprise. This was the unthinkable. Many senior attending had delivered more than 50,000 babies without seeing what I saw on my fifth day on obstetrics.

It was a bright autumn morning, and the floor was as busy as ever. The flow of patients fluctuated greatly on labor and delivery, and the staff knew that babies never respected anyone’s work schedule. The residents were busily caring for patients and teaching students, and the nurses quickly completed their tasks for the day. This was no change from the baseline hustle and bustle I had become accustomed to while on the floor. I exited a room after talking with a patient to discover a nightmare. The normally loud central station was now deafeningly silent, and everyone stood like statues looking into one of the rooms with a closed door. The motionless environment would be occasionally interrupted by residents and nurses running in and out of the room, their faces denatured by a horror I will never forget. We were all holding our breath, hoping that the worst would not happen. Then, one of the residents swung the door wide open, walked out of the room, and began to weep. She was followed by a long line of staff who cried tears that I am sure have not dried completely even now. We all knew what had happened at that point. Saying the words was unnecessary. What was never ever supposed to happen, somehow, happened.

Throughout my life I have come to embrace death as a natural part of life, but this time it just didn’t seem right. As a medical student, I was greatly affected by the events of that day, but I cannot even begin to imagine the torment experienced by the staff. In the end, I learned many lessons that I know I will take with me for the rest of my career, but, most of all, I realized that the worst outcomes, the things that are never supposed to happen, are sometimes inevitable, and we must never forget that even as highly skilled physicians, death and disease will continually humble us.

Nurse Ausmed tells the story of Jane, a registered nurse of twenty years experience. "She is thorough, careful and deliberate. And on a Tuesday morning she makes a multiply-by-ten error." The post is called "That Sinking Feeling." Things eventually work out fine for the baby in question, but Jane is seared by the experience, notwithstanding strong support from her colleagues.

She is horrified at even the slightest possibility that she might have caused harm to a patient, particularly one so vulnerable. The ward has hit a bit of a slow patch for the first time that morning and her colleagues gather, reassuring her that she is in good company. They tell stories of their own, mistakes they have made and how stupid they felt.

Ryan DuBosar, Senior Editor at ACP Internist, gives us a teaser about this article: What happens when an internist orders test results, and then never sees the results? From an actual case file, a 61-year-old asymptomatic man sees his internist of 10 years for a check-up. When reviewing the medical record, the internist sees PSA test results of 11.8 ng/mL. Surprised by this finding, the internist digs further. A year ago, the PSA was 8.2 ng/mL and three years ago it was normal. The patient was never told; the internist is certain she never saw it. She wonders what to do next.

Barbara Olson, a nurse from Georgia, writes, "I've been waiting to share this story, and it just seemed to pour out after I read your invitation the other day. I don't know if my story fits, as I am both a family member and a health care professional. But my ability to see 'the big picture' (details of which I share in the post, "A Belief Born of Despair") helped me to heal personal wounds and leverage my position as a health care professional in hopes of finding effective solutions."

What could go more awry than a surgeon having a heart attack while performing surgery? InsureBlog's Henry Stern tells the true story of the Italian doc whose dedication to his patient overrode his own immediate health crisis.

David Williams at the Health Business Blog writes about "(Un)acceptable quality levels in health care." His bottom line: "It’s pretty shocking that people struggling with cancer end up as the victim of so many errors in their treatment. McDonald’s would be out of business if they screwed up so many orders. So would Fedex. American consumers don’t typically accept this level of error in other service industries and shouldn’t accept it in health care either."

Speaking of messing up, can we accept that giving the wrong price for a procedure is a kind of harm? Jay Norris says so here. A summary: "The initial visit was billed at $165. The surgery came to $1,639, ouch! I expected it to be a little higher than what I was quoted, maybe even $600, $700? But it was over 5x higher than the ballpark estimate I was given on the phone. “It’s hard to tell?” I guess so!"

Roane Weisman tells us "my story of how the medical system gave up on me after my stroke." She concludes: "Doctors must understand what illness means in the lives of their patients. They must use their positions, their authority and their words wisely. They have the power to heal, but they also have the potential to destroy hope and, along with it, the chance to recover."

Cindy Pittman sends the following story:

Last year my father-in-law was in the grips of advancing oral cancer. Utilizing the medical contacts at my disposal I dragged him away from the "we only do surgery, will never send him for radiation" rural practice to the best tertiary treatment center and where I had recently received my MHA.

Sadly, as the cancer advanced faster than imaginable, stealing his ability to communicate, this very institution stole his health and last bit of dignity. Increasingly over medicated, he was first sent to the psych ward, followed by a sitter who seized the opportunity of a 'difficult patient,' claiming he hit her [because she stole his wedding ring, which she later returned.] In the interim, our 'difficult patient' had another sitter who was nowhere to be found until long after he stopped breathing and suffered brain damage.

I quickly learned that patient health and safety should extend beyond the physicians and nurses to a culture of accountability. I’ve also learned how quickly one negative event/perception can have far-reaching outcomes for our patients.

Ann Folsom tells a story about her local hospital that does not involve a medical error per se. In so doing, she reminds us that medical care involves administrative and other people in addition to health care providers.

My husband was at the hospital because his doctor wanted him to get three days of monitoring as he changed meds for arrhythmia. He was really cold because the room could not be warmed.

Nurses entering the room remarked on it, and left the door open into the hallway to try to bring in a little heat, but that wasn't enough. They tried warming hospital blankets and bringing them in, but of course after a few minutes, the blankets cooled off again. He kept shivering, so I asked if it would be okay if I brought in a comforter from home.

The nurses said that was a good idea, and they recommended it, so I brought a big comforter, and spread it double over on his bed on top of the hospital blankets, and tucked it in. This helped him to sleep better at night.

On the last morning, when he was released, a maintenance man came in to fix the heater, and told us that the dust in the radiator kept clogging it, that this was an ongoing problem, and that he had to keep doing repairs, as the problem wasn't prevented.

Linda Kenney's personal story is well known to many of us, and it is a tribute to her that it led to the founding of Medically Induced Trauma Support Services (MITSS). Here's an abridged version:

November 18, 1999, marks a day that changed my life forever. I was scheduled for a total ankle replacement. As this was my 20th surgery, it didn’t seem a big deal to my family, friends, or me. The reason for most of the surgeries was the fact that I was born with bilateral club feet.

I met with the anesthesiologist, Dr. Rick van Pelt, and we formulated a plan for general anesthetic with a block which would numb from my knee down. This would help with post operative pain management. I said goodbye to my husband and went to the pre-operative area where the block was performed. The block had been delivered, and within minutes I had a grand mal seizure followed by full cardiac arrest. They called a code but were unsuccessful in restoring my cardiovascular function. Fortunately for me, there was a cardiac suite ready for another patient, and they were able to bring me across the hall and open my chest to hook me up to a cardio pulmonary bypass machine. This all happened with thirty five minutes of the onset, and after an hour or so on bypass I was slowly weaned off. I was then taken up to the cardiac intensive care unit.

When I awoke days later and realized what had happened, I was so grateful to be alive and felt extremely fortunate.... I had one conversation with someone who said I had an allergic reaction to medication, but this didn’t make any sense to me. During my entire hospital stay, not one staff member referred to the incident. It was like the giant elephant in the room – lurking in the corner with no one daring to mention it. I remember thinking…well, if no one is talking about it, maybe it isn’t such a big deal.

When I was discharged, I was given instructions on how to care for my chest and information regarding a visiting nurse. But, no one informed me of the emotional impact an event like this would have on me or my family.

Since physically I looked like I had prior to the surgery, family and friends assumed I should be over it by now. At this time I felt so alone and isolated. In hindsight, I realize that they didn’t understand (nor did I) that I hadn’t dealt emotionally with the event up until now. I felt as though I was falling apart. I felt abandoned by the hospital. I met with my orthopedic surgeon a few months after the incident, and we started to discuss what had happened. He began to share with me what that day was like for him but was unable to continue because he became too emotional. It was then that I realized this event didn’t just affect my family and me but the healthcare providers as well. (Go here for more information on Dr. van Pelt’s experience.)

I began to realize that this was bigger than me. More than likely, other patients and families as well as clinicians were not being emotionally supported following unexpected outcomes and medical errors. It became clearer that there were many reasons for this (fear of litigation, the healthcare culture, no infrastructure for emotional support, etc.). I felt compelled to change the system which had failed me. I experienced an incredible sense of responsibility because I was one of the lucky ones to have survived. I came to know firsthand that there was a large hole in the healthcare system which needed to be filled. In 2002, I founded a non-profit organization, MITSS, to bridge the gap.

It has been an incredible journey. I have come to know many others whose experiences mirror my own. I understand their pain and frustration with the system which does not yet adequately support them. Their stories serve to inspire me and reaffirm the fact that there is still much work to be done. The fact remains -- even in the safest of healthcare systems, things can and do go wrong. I don’t believe there are bad people in healthcare. Sometimes, they just don’t know what they don’t know.

Finally (almost), Westby Fisher sends this note: "About a year and a half ago, I wrote a piece about the importance of medical errors to doctors' and nurses' training; about the importance of morbidity and mortality conferences and touched on the loss of the autopsy as a teaching aide. Obviously, it struck a cord with folks and remains one of my favorite pieces, in part, because it takes a contrarian stance on the subject: that medical errors are good for you. Although it's not a particular case study, as it seems you want, I thought it might be relevant to your grand rounds."

And, one more from Ramona Bates, not because it is quite on topic, but because it has really good advice that might help someone. She says, "Be a potential hero -- Learn CPR." Actually, I guess it is on topic. All health care workers should know this basic set of skills.

Now, finally, a last minute submission from Tanya. She thought it would be too late for this edition of Grand Rounds, but I added it as a tragic bookend to the lovely essay provided by Cherie at the beginning. You will see why.

Ten years ago my son, Noah, died 3 days following a tonsillectomy. It was a day procedure and we were sent home. He was not able or was not willing to drink or eat and he was vomiting often. This continued through the first and second nights at home. I called the doctors on call all weekend, a total of 7 times, for advice. He continued to not drink or eat, and finally on Sunday morning they told me to take him to the emergency room. There they treated him for dehydration, kept him for 23 hours and released him, still not taking anything by mouth. A home nurse was scheduled to give him IV fluids at home 12 hours at night.

No one evaluated the surgical site or the persistent cough he had or really anything. The physician literally popped his head in and told us that he was going home, that he was suffering from dehydration and nothing more. He never once physically examined him. The surgeon consulted by phone and never saw him either. We were tired and confused and took him home. He hemorrhaged 5 hours after being home. Not a trickle: It was loads of blood coming from his mouth and nose. He stopped breathing three times. The first two times I was able to clear his airway and revive him. The third time I could not clear the blood clot, and he died before the ambulance arrived.

I was contacted by the surgeon. For a period of time he answered my questions. He did not ever explain to me what had happened. When I pushed him, he told me that I would never be able to understand what had happened. No one from the hospital contacted me. I requested a meeting to better understand what had happened, but that was refused. When I finally had asked one too many questions of the surgeon he said, "There is nothing I can do for you. Your only choice is to sue me." Sadly that is what I did.

Apart from my son's death, the lawsuit was the second worse experience in my life. It kept the wounds fresh for years following his death. I was humiliated and belittled during the depositions. The outcome was in my favor...technically we won...but nothing ever has felt so empty as that "victory".

I had been a special ed teacher before Noah was born. I was a happy stay-at-home mom. After his death I read everything I could find regarding tonsillectomies and complications. It led me to learn more about medical errors. At first I was angry at the physicians that had ignored my son's needs. Later I realized that it was a system deeply flawed that had caused his death. Since then I went on to get a MPH and am now a PhD student focusing my research on patient safety interventions.

What advice would I give clinicians? There is so much but here are a couple:
-- Take the time to listen when a patient or family are telling you that there is something wrong. I knew he was not well and kept saying so.
-- Don't treat only the obvious symptoms. Take the time to go one level deeper.
-- Tell patients/families important symptoms to look for -- especially things that are not intuitive. For example, blood that has been swallowed and vomited might look like coffee grounds not blood.