This is primarily a report on an event, but I’ve added links, stories and examples to my notes.

The event:

Bioethics lecture on Error: https://www.eventbrite.com/e/conversations-in-bioethics-tickets-10276951639

Brief description: “Join distinguished national experts John James, PhD, former chief toxicologist at NASA and founder of Patient Safety America, Brian Goldman, MD, emergency physician-author and host of the CBC’s White Coat, Black Art, Beth Daley Ullem, MBA, nationally-recognized advocate for patient safety and quality and SFS alum, for a lively discussion and Q&A moderated by Maggie Little, Director of the Kennedy Institute of Ethics.”

The follow-up:

For those who are particularly interested in this topic, the Kennedy Institute has an upcoming Bioethics MOOC starting 4/15: http://kennedyinstitute.georgetown.edu/about/news/bioethics-mooc-spring-launch.cfm

Why Create this resource?

What follows is a long resource- an in depth summary of the lecture I attended last night, complete with many links to other resources and a few stories and examples. Like the members of this panel, I have experienced a dramatic medical error. In 2012 my mother was on life support after experiencing a period of time with no oxygen to her brain. Her heart had stopped twice, and she was unresponsive. I am her only child, and I had essentially moved into the hospital with her in order to be her advocate. It was my decision whether or not to continue life support, and the main deciding factor was whether or not she was brain dead. She was given an EEG test, and it did not look good. There was a delay before I heard the results of the test, and I spent that delay researching her EEG patterns to try to understand what was going on. The next day the medical staff involved in her case sat me down and told me she was indeed brain dead. It wasn’t until my cousin had announced her passing on Facebook, I was saying my final goodbyes, and my aunt was on the phone with the funeral home that the doctors on the case realized they had miscommunicated. Another patient in another hospital was brain dead, but my mother was not officially brain dead. Her brain activity appeared to be seizure activity, and it wasn’t clear if there was anything else going on. The group apologized, and we were forced to reverse the story and try to explain to friends and family (and ourselves) that she was not actually dead, but she was still very close to it. There was a tide of “Go get em!” cries, which were difficult to deal with when we did indeed have to remove life support a few days later.

After this event, one of the physicians involved in the miscommunication focused my attention on a collaborative project. We began work on a grand rounds presentation for the hospital. We planned to talk about errors in general and, more specifically, what could be learned from this error. I did quite a bit of reading and research. We had some great discussions, and I started to attend a medical discourse group in my graduate linguistics department. At some point I will probably return to the notes from that collaboration and assemble a blog post about them.

It is because of that experience and that project that I assembled the resource below. I sincerely hope that you find it interesting and useful.

Please note that this is based on many pages of notes. Unfortunately my notes did not attribute points to individual panelists. I apologize for that omission.

Prevalence and Detection

An estimated 100,000 lives are lost each year from preventable medical error (according to 1999 landmark Institute Of Medicine report), but this data is old (1984, New York State) and focused on errors of commission. There are many other kinds of errors, including omission, context, diagnostic and communication. Measuring preventable deaths is easier than measuring mistakes overall, but mistakes that do not directly lead to death cause plenty of heartache every day as well.

One more recent attempt to detect medical errors involved isolating common trigger words that accompany medical mistakes in medical files and then having the cases reviewed by medical professionals to see if the deaths were indeed preventable. By this method, the estimate was closer to 210,000 preventable deaths. This method was more comprehensive, but records don’t have the right parameters or standardization to make this process ideal. Some estimates are as high as 440,000 deaths per year.

Regardless of the exact numbers, for physicians, there is a near 100% possibility of making a mistake at some point. This fact alone should change the paradigm from avoiding errors altogether to openly anticipating and working with errors as they happen.

Aftermath

After a medical error occurs, heartache abounds. But contrary to social conventions outside of the medical establishment, contact is often strictly controlled and regulated after the incident, and the physician is rarely able to say “I’m sorry.” This can cause a lack of closure for both the patients and the doctors. The aftermath of one of these errors forms a second layer of trauma for all of those involved.

The first target for any kind of error is often the individual who made the mistake, not the system that enabled the mistakes. The system quickly closes around this individual. The hospital risk administration sets in. Privacy walls are erected, and it becomes very difficult to take responsibility for one’s errors. A perfect storm of system and culture clash together, resulting in ill-advised words and actions on the part of those involved. At such a sensitive time, the words of care providers are often burned into the minds of the deceased patient’s advocates and family members. Blame is often tossed around indiscriminately. The survivors are often left feeling confused. One of the panelists remembers her physician counseling her with “I really don’t know why God needed your baby more than you did.”

The medical providers at this point are isolated from their patients and often prohibited from discussing these incidents with each other. At such a vulnerable moment, they are left to deal with it alone, taking each incident as a private failure when mistakes are a universal human condition. If other providers hear about the incident, they will often exacerbate the problem by not making eye contact, demonstrating their vicarious shame, reinforcing the problem as a repudiation of all a doctor is supposed to be.

System level Problems

The medical system is large and complicated enough to really enable errors. There are so many medical professionals, patients, laypeople and touchpoints, and the body itself is quite a complicated system- some of which is better understood and some of which is still largely undocumented territory. The medical system is evolving fast from the mom and pop doctors of the past to the large complexes of today. The modern medical system has its hand in businesses that no one would have imagined before. Some hospitals boast dental facilities, nursing homes, outpatient clinics, and even foster care facilities. The changing rules for insurance payments and the increasing role of legal actors also have a significant influence on the system.

In order for hospitals to make money, many end up adjusting the patient care ratios. Some stretch these ratios to the breaking point, putting medical staff in a position where they can barely keep up. The pressure for productivity is much higher now than it was in the recent past. Many facilities are over capacity, and space is at a premium. This can put medical staff in an awkward position where there are constant workarounds and makeshift solutions. These kinds of problems can lead to  errors of context. The same patient may be treated differently in the ambulatory care area of the same wing than in the rapid assessment area. In the words of one panelist “geography is destiny in the E.R.” Movement in space within a medical facility is both physical and cognitive.

Scheduling is also a huge issue in medical facilities. Long stretches of work without sleep are a better known precursor to many medical errors.

Technology

Technology is integral to the modern medical system and has saved many lives. But technology training and interface design are extremely important. One panelist reported that a medical professional confessed to him years after his son’s preventable death that the MRI machine was new, and no one onhand knew how to use it properly. Others have reported on the influence of signal fatigue- it is very hard amidst a constant stream of signals to ferret out the most important among them.

Technology was a real point of frustration for me when I had my first child. I was induced in the evening and felt increasingly strong contractions all night. When the nurses came to check on me, I reported that I was in labor, but the pattern on the monitor was not consistent with what they would call labor. Once I started to push I called them back and requested an exam, and fortunately, although my doctor and the doctor on call were not available, they were qualified to catch the baby.

Medical culture

One of the panelists told the story of a physician who began his shift by calling together his team, warning them that he did not get much of a night’s sleep the night before, and asking them to watch his back a bit more closely than usual. This runs starkly contrary to typical medical enculturation. Medical culture makes it harder to admit mistakes or to be human. One panelist commented “We’re very defensive about our mistakes.” This is emblematic  of a culture that can’t handle its own humanity. This repulsion by error is compounded by a system that doesn’t comment but rather expects good performance. The “no news is good news” ethic means that a physician can go his or her entire career without ever hearing any feedback, and that can be a good thing.

In medicine, the smartest person in the room is quickly the person in charge. One of the panelists, Brian “didn’t want to be a high-maintenance student” as a resident by asking too many questions or requesting help too often. This attitude wound up fatal for one of his patients. Errors are a reminder of human fallibility, and medical professionals are supposed to be infallible. Brian talked more about this in a TED talk. In it, he spoke of batting averages. We assume that error is a natural part of other jobs, but what is an acceptable batting average for a surgeon? A mistake can mean that one was lazy or incompetent or had a lapse. Which one does the physician want to admit to? None! Instead, they often live in terror when one mistake happens that another will soon follow. One panelist said the words he most fears as a medical professional are “Do you remember?”

Instead of the culture of shame and blame, we could benefit from being scientific about error: exhibiting genuine curiosity about errors, measuring them, and developing and testing treatments for them. One panel member mentioned a surgeon who developed a kind of flight data recorder for surgery: http://www.icee-con.org/papers/2008/pdf/O-100.pdf . Apparently this surgeon has been dubbed “the most dangerous man in surgery.”

Isolation and selective training

People are trained in the context of the settings where they have worked. Different settings see different kinds of challenges. Shouldn’t there be a better system for sharing challenges and solutions across institutions?

Handwriting

It is pretty incredible that such a high stakes field rests on human handwriting. This is made worse by the lack of value placed on making handwriting legible and on the decreasing abilities of a technologically savvy population to decipher human handwriting. How many of you can read cursive?

Science or Art?

One interesting aspect of medicine is the way it is a field composed of scientists who view themselves as artists. This is evident in the total lack of standardization in medical care. You will have a different experience, even with the same condition, across locations and providers. Even within a single hospital individual doctors act as subcontractors, providing individualized service as only they can, despite the common environment. Sometimes there are standards or guidelines set for specific areas of medicine with a goal of instituting consistency. But the adaptation of these standards and attitudes toward these standards are far from universal. The standards take shape differently across locations and providers.

The panel members mentioned the success of VA hospitals in this area. They are better at standardization. Vertically integrated healthcare can be much more progressive.

Areas for improvement

So what kind of changes would improve the system? Some prominent authors liken error models to those in the airplane industry. This is tricky, because medicine is far more complicated that aviation- although both are high stakes fields that require inhuman levels of perfection among human actors. But even if the systems are different, they can still learn from each other.

Atul Gawande is a well known author The Checklist Manifesto. He has been advocating for many of the checklists and safety features that are standard in the aviation industry to be applied to medicine. He also wrote a piece about what medicine can learn from The Cheesecake Factory.

Some suggested areas for improvement include instituting redundancies, collapsing hierarchies and patient centered care.

One panel member was involved with error prevention at more of a business level. She mentioned the power of adding redundancies. Adding redundancies should be common practice and is common practice in other high stakes fields. Redundancies should be worked into routines and checks, although models of modern efficiency seem to be moving away from them. She also mentioned the powerful potential of dashboards and the importance of comparative information. One great example of the power of comparative information is “Solutions for Patient Safety” http://www.solutionsforpatientsafety.org/ . This is a group of 78 pediatric hospitals that share a common dashboard. Using the dashboard the hospitals can see how they stand in terms of infections and other errors compared to the rest of the network. It’s a teaching model- the best teach the rest about the measures they’re using to combat each problem. The panelist mentioned that we buy healthcare products without comparative information, but information on dashboards can really increase accountability.

Collapsing hierarchies would make it more culturally acceptable to report medical errors. This could also be augmented through multidisciplinary peer reviews, involving everyone from providers across medical specialties and training to janitors and other people present at the time of care.

One of the panelists wrote a patient bill of rights. An audience member commented on the need for patients to feel more powerful and have more power in medical situations. He noted that the playing field between doctor and patient is inherently unequal. As soon as you remove your clothes and put on the patient smock you begin to feel powerless. He noted that some medical providers will take advantage of that vulnerability. The foundation of patient centered care is informed consent. If you don’t understand your options, you cannot make an informed choice.

One specific example of an area where patients are unable to make informed decisions was off-label prescriptions. Prescriptions are often prescribed off-label, meaning that the patient is not part of the population base for which the drug was tested. This was the case for me when my first child was born, and I was induced with Cytotec. When she was born, a healthy 8 lb 3 ounce baby aspirated meconium and ended up in the NICU while I was treated for hemorrhage. I knew nothing of the drug or the potential consequences. In fact, I had chosen an unmedicated chidbirth and eschewed interventions altogether.

Another example of an area where patients can’t always make informed decisions is that of cost. There has been quite a bit of buzz lately about the ridiculous hospital bills patients receive upon discharge. I can’t tell you how paranoid I am about any supplies used on myself or my kids in the E.R. having seen some of those bills. A close friend of mine recently had an incident where an inexpensive scheduled dentist appointment turned into over $2000 in charges, due immediately. That incident led to an extensive series of phonecalls between myself and the dental office, debating consent.

An audience member spoke about the importance of patient advocates.  Apparently there is a growing business of professional patient advocates. I think that this is wonderful, because historically the only qualification necessary for a patient advocate was that they not be the patient. I’ve had the experience of reading transcripts of doctor patient visits that included advocates. Certainly not all advocates are built alike! This role is more deeply explored in the book “High Performance Healthcare”

Opportunities for Linguists

There are two main applications for linguistics that are most evident in this discussion. One is the potential for computational linguists and natural language processing experts to mine the textual data available in  electronic health records as they become increasingly available. The other is the opportunity for discourse analysts to conduct research on the actual communication between everyone involved. Discourse analysts can both develop and institute more structured protocols, such as the double verification before certain medications and procedures, and raise awareness regarding instances when less than optimal communication styles can lead to mix-ups or other mistakes. Discourse analysts who specialize in apologies could be particularly effective advisors in training medical professionals to talk with patients and their advocates and family following medical errors. This is a strong interest of mine, and I’m lucky enough to attend regular medical discourse discussion groups with the head of my graduate department, Heidi Hamilton. Her work is a real treasure trove of medical discourse, well worth investigating further.

On a personal note, it is also very healing for victims and survivors to build narratives around these incidents that help to give them a wider context and meaning. I wrote about that process here: https://freerangeresearch.com/2012/05/22/ot-on-loss-and-grief-and-the-power-of-storytelling/

You may notice that I decided at that point not to give the medical error a place in my mom’s story. That was an important decision for me that helped me to heal.

Moving on

The three panelists had all lost people due to medical errors. I’ve also been the victim of medical errors. We were able to find some healing in the process of going deeper into the errors and the medical system that enabled them. You have also probably suffered in some way as the result of a medical error. It is also important to note that all of us have also had our lives made better by medicine at some point, and we probably also all know people whose lives were saved by medicine. It is an imperfect system, but it is a system with a lot of strengths.