Monthly Archives: October 2014

Ebola Politics

There’s much in the news this week of a nurse who is refusing to stay in quarantine after her return from caring for patients with Ebola in West Africa. So many issues here. Hard to know where to begin.

First, the nurse is correct in her statements that there is no scientific evidence that she should be in quarantine. She has twice tested negative for the virus. She has no symptoms (a forehead temperature registered high at the airport when she first arrived in the United States, but follow-up temperature readings have been normal). The disease is not contagious until people are symptomatic. And again, she has tested negative twice so far.

The fact that she has valid scientific points does not mean that her manner of spurning authority is the most useful strategy or the wisest thing to do in this particular case.

The fear surrounding this particular disease is intense. The vitriol directed toward those who contract the disease when caring for the people afflicted by it is mind-boggling. There is a lack of logic and common sense regarding this disease which is maddening. So adopting a tone that appears belligerent is not necessarily the best way to calm fears, educate people, and work with the scientific community and government officials in a cooperative, productive and helpful way.

Thousands of people have died in West Africa due to this Ebola outbreak – about 5 thousand at this point, out of about 13.5 thousand total cases, in countries whose populations total about 22 million. The medical infrastructure is not present to adequately treat the people there and control the disease. We need more facilities and healthcare personnel to contain the outbreak. The bigger the outbreak becomes, the higher the likelihood that people with the disease will end up in the United States, so even if some people don’t have deaths of people in another area of the world high on their personal radars, the outbreak will have some effect here – it is a global issue. We need people to work together in a smart way.

Ebola is spread through contact with bodily fluids of a person who is actively sick. Casual contact with someone who does not yet show signs of disease has not been shown to transmit the virus. Monitoring people who have come in close contact with actively ill Ebola patients (i.e., healthcare workers, people who are cleaning the bodily fluids of those who are ill, etc.) through the potential incubation period (the time it takes from exposure to disease development, in the case of Ebola 2 to 21 days) is fairly easy to do when there is a small number of people to monitor. When we send large numbers of military personnel to help with the crisis overseas, it will be more difficult to monitor everyone individually on their return, and so a three week quarantine from time of last exposure makes logistical sense.

We are not quarantining every doctor, nurse, lab technician, or custodial worker involved in the care of Ebola patients and their environments. We are monitoring. We are using common sense. We are looking at the data – this is not a new disease, and we have observed the patterns of transmission.

The nurse who is fighting her quarantine has brought in lawyers. She is figuratively kicking and screaming about her rights being violated. The general public is looking at her reaction and saying, “How selfish! What a spoiled brat! How dare she put me at risk?! Three weeks is no big deal. She should err on the side of caution and be done with it!” Her belligerence invokes anger, not understanding or alliance. Her dismissal of people’s fears does not promote an environment of respect and teamwork.

The nurse’s lawyers and the state of Maine’s lawyers are currently trying to work out a compromise. This is beyond ridiculous. Why are lawyers negotiating a public health issue? The state’s public health department has authority here. The federal government, through the CDC (Centers for Disease Control and Prevention), has authority. If the state’s public health department has said “quarantine,” then the quarantine should be respected. If the state has its information wrong, the CDC can step in.

The nurse in this case is well within her rights to cry “foul” to a policy that is grounded in fear rather than scientific reality. But the crying should be done smarter.

She should have called Doctors Without Borders, with whom she’d been volunteering. She should have called WHO (the World Health Organization). She should have called the CDC. After speaking with these organizations and getting official confirmation of appropriate protocols, she should have spoken with the state authorities with whom she disagreed. If they didn’t listen to the advice from WHO and the CDC, the nurse then should have gone to the newspapers and TV networks.

I understand and agree with the stance of not blindly going along with inappropriate policy. When reality/facts/science are ignored, bad things happen. People are ostracized. People are vilified. Already, a child was kept out of school in Connecticut because she had visited Nigeria (not an epicenter of this disease, and she had not come in contact with any sick people) for a family wedding.

The school defended its decision by saying “some of the other parents were scared.” This makes about as much sense as keeping a kid out of school in the Midwest because he had visited his family in Texas, and someone in Texas had Ebola. That school ignored facts and made poor decisions based on ill-informed fears. The nurse in our story is trying to prevent such poor decisions.

If she had just said, “whatever,” and stayed inside for three weeks (or in her original quarantine tent for three weeks) she would have not suffered any long-term negative effects, but she would have been complicit in the propagation of such ridiculous events as transpired in the Connecticut school. She would have been complicit in allowing fear-generated policies to stay in place that would discourage anyone from helping those in desperate need of medical help. She, a healthcare professional, would have been complicit in bad medicine.

But by simply showing defiance and going straight to the lawyers, she, a healthcare professional, says that it’s ok for people to defy public health authorities.

So here’s an alternate unfolding of events:

Nurse gets off plane. She discloses her work with patients with Ebola. Forehead temperature scan reads high. She denies any symptoms. Because of the high temperature reading and an abundance of caution, she goes to the hospital for temporary observation. All subsequent temperature readings are normal and the nurse remains free of symptoms. Lab tests for Ebola are negative. Nurse calls Doctors Without Borders and gets contact information of their infection control experts. Nurse calls CDC and WHO and gets contact information for their Ebola gurus.

Infectious disease team at hospital talks to Ebola gurus from CDC, WHO, and Doctors Without Borders. They reach consensus. They make recommendation to local health department. Local health department makes decision based on evidence, expert consensus, and known data, rather than on TV news sound bites of the fears of random citizens with no science or health background or training. In the meantime, the nurse waits for the appropriate people to deal with the issue. And she abides by the answer.

The media circus was unnecessary. The lawyers were unnecessary. What was needed was communication among all the experts – those on the front lines, those with the epidemiology background, those with the infectious disease expertise. And the government entities needed to listen to those with the knowledge. And a healthcare professional should have recognized the need for this type of communication facilitation, and should have respected the public health entities by working appropriately through the correct channels.

Lastly, keep in mind that tens of thousands of people in the U.S. die from complications of influenza every year. Get a flu vaccine. Measles is one of the world’s most contagious diseases, and it’s contagious from four days before a rash shows up. Get your kids vaccinated. These are issues the media should be headlining in this country right now.

 

Shared Experience, or the Lack Thereof, and Understanding

I just recently attended a meeting where there was a panel discussion on caring for Holocaust survivors. The person who opened the meeting spoke about how she felt inadequate when dealing with this population because she had no personal place of reference – she had no family members who died during the Holocaust, and so she couldn’t truly understand what the survivors went through.

I have a different thought.

Although every experience each of us has helps us to put ourselves in the shoes of others, helps us to empathize, helps us to imagine what others may be going through, each shared experience also puts a potential block between us and the person we are trying to understand.

There’s an old joke: “When two people are having a conversation, one person is talking and the other person is waiting.” We know what we want to say. We are ready with our next speech. We listen to enough of what the other person is saying to tie it in and segue nicely into our “response” to what the other has said. Frequently it’s not truly a response to what the other has said – it’s our response and reaction to the thought as it was first introduced.

If we think we understand someone else, we may fail to listen enough. If we think we don’t understand them, we may listen more carefully. If we think that we cannot understand someone, then we may stop listening altogether. It’s a balance.

I am frequently struck by how differently two people can experience the same event. And I am frequently struck by how similarly two people can respond to disparate events. So alignment of thought, emotion, reaction, and experience is not completely predictable. We need not to presume that we understand someone else. We need to listen and remain open to the possibility that we might not “get” someone that we think we do, or that we might completely “get” someone to whom we had thought we couldn’t relate.

While in many cases having a fundamental experience in common can strongly connect people, the durability of that connection ultimately depends on factors other than that common experience. A genuine caring for the other person, a willingness to hear what that other person has to say (rather than just assuming knowledge of the other person’s story), and the ability to accept differences in the other person enables the relationship to grow and strengthen. When those other factors are present, that shared experience is not necessarily crucial to the interpersonal bond.

Support groups can be very helpful for many people. They pull together individuals who are sharing a specific struggle. The people in these groups can learn from one another, sympathize with one another, gain insights from one another, and support one another. But generally the people who participate in support groups are people who want the support, want to support others, want to connect. There are guidelines in place to protect members’ anonymity (if so desired), and to allow each member the opportunity to tell his or her own story, thus encouraging other members to listen. It’s not simply the shared experience that makes the groups work – it goes far beyond that.

Because I must work very hard to maintain a healthy weight, I can sympathize and empathize with people who struggle with their weight. But if I assume that their experiences and reactions are the same as mine, the counseling and advice I give could very easily not work for them. When I listen, when I get people to tell me their stories, I can combine their situation with what I know from the medical literature, what I know from my own experiences, and what I know from having listened to others’ narratives, to synthesize and formulate a plan with them.

I am not a smoker. I have never felt an overpowering urge for a cigarette. Yet I have been able to help many people quit tobacco use. My lack of sharing in the experience forced me early on in my medical career to take the time to really listen to what my patients had to say about why they smoked, why they wanted or didn’t want to quit, what made it difficult for them to quit, and what seemed to help them and what didn’t. I didn’t come at it with a preconceived notion, with an “oh, I’ve been there, I know what to do” approach – I let my patients teach me.

So while a shared experience certainly can help people understand one another, it is not necessarily so, and a lack of experience-sharing can in some instances lead to better understanding through true listening unhindered by expectations and preconceptions. The key is the willingness to listen. To stop waiting for our turn to talk, and to really listen.  Of course this means that the conversation will take longer, since we need to take the time to formulate a response after fully listening to and hearing what the other person has to say, but the communication that actually takes place during that interaction will be far more fruitful.

The person at the meeting who felt inadequate in counselling a certain population because she hadn’t experienced their trauma still has plenty to offer. If she says “I will never know what you went through, but I care about you and want to understand you. If you will teach me, if you will tell me your story, I will do my best to listen and to learn,” then she will have potentially opened a door to a connection, to trust, to a potentially therapeutic relationship, and ultimately to an understanding that can possibly help her to help the next person whose story she listens to and hears.

 

 

 

The Profundity of a Quick Visit from College

The weekend before last, my eldest son came home from college for a couple of days. Our home was in perfect harmony and rhythm. The duets (and quartets, if you count us parents) that had played over the prior month-and-a-half were once again trios and quintets. Five or six hands on the piano at a time. The clear brass joining in again with the bright woodwind and the deep bass. The voices in song with layers of harmony at the Friday night dinner table. The rhythmic click-click-click of the ping pong ball coming from the basement and the smooth, beautiful sounds of conversation and laughter late into the night. The sounds of a football being thrown as the three boys took over the street (and a few of our neighbors’ front lawns). Again, the laughter as they fake tackled one another both outside and inside the house. And inside the car. Believe it or not, you can tackle someone inside a car. I had almost forgotten that.

And then, less than 48 hours after we brought him home, we took him back to school, where he is developing his rhythms and harmonies that are separate from those of our family, yet undoubtedly still influenced by them. And the other four of us came back home, where we are adjusting our own time signatures and keys to reflect the change in our daily orchestration.

It’s funny. Of all my doctor skills, I really pride myself on being in-tune to my patients’ (and now my clients’) feelings, on my sense of empathy. But this is something I just didn’t get before – how something so good, something we’ve all worked for, can cause such an emotional upheaval. If I had been chatting with a patient a couple years ago, and she had told me her kid had just gone off to college an hour away from home, that he was doing great, that they communicated with him at least by text if not a phone call pretty much every day, and that they were able to visit with him for a couple hours on campus most weekends, I would have said, “that’s great!” and not given it much further thought, aside from being generally happy for her family’s general good fortune.

And it is good fortune. It is beautiful. It is as it should be. But it is a fundamental change. Rather than it’s being the exception that your child is away for a few hours, a few days, or a few weeks, it is now the exception that your child is home for a few days or that you see him for a few hours. And that thought can rock your world. It was very difficult walking back into the house after dropping him back at his dorm.

I now would take that conversation a lot farther with my patient. I would ask how she’s dealing with the changes in household dynamics, how her husband and other kids are adjusting, how she’s dealing with the stress of missing her child on a daily basis, whether she’s addressing the emptiness with cookies or channeling it into a daily walk. (Note: I’m walking. I have resisted the cookies.)

Our family’s song is developing. The instrumentation of our full ensemble is now the punctuation, the accent, rather than the underlying theme. It is our family’s first inversion. And our family will go through a similar second and third inversion over the next few years. The music is beautiful, yet in some ways a bit haunting. Melodious, yet profound. The beat changes and evolves, the lines harmonize and canonize as each musician conducts his own score through the blending and separations of the melodies. The music plays.

What Football and Infectious Disease Control Have in Common

Communication. Such a simple concept. And yet so many ways in which it can fail.

Two examples of communication failures hit the news this past week, both of which have potentially severe medical repercussions, albeit on very different scales.

The first occurred this past Saturday at a Big Ten football game. The quarterback took a hard hit, and his head slammed backwards onto the ground. When he got up, he was so shaken and off-balance that he stumbled and collapsed into his teammate. So obviously, he would be pulled from the game and given medical attention, right? Nope. The coach put him back in for another play, as the crowd booed its displeasure and indignation. No one could believe the coach would show such blatant disregard for his player’s well-being, and there are strict regulations in place regarding head injuries in sports and protecting the athletes when there is any suspicion they have suffered a concussion.

But the coach didn’t pull the player out for a neurological check because he (the coach) hadn’t seen the player’s hit, his head-slam, or his resultant signs of head injury. The coach knew the quarterback was playing on an injured ankle (which had been medically cleared for play), and when he saw him limp back to the sideline, he assumed it was an ankle issue, stuck him in for another play, then had medical personnel check his ankle, and put him in again. Thousands of people in the stadium saw what happened. Millions of people saw on TV. Everyone assumed the coaches saw. But they didn’t – they were monitoring so many different things, planning, talking to people, and assuming important information would get to them. But the information didn’t get to the right people.

The university where this occurred is taking steps to ensure such an event doesn’t happen again. For example, they’re placing medical personnel in the press box for future games and giving them direct communication lines to the coaches. Systems approaches are good. They help. I’m glad they’re putting in extra safety layers to protect their student athletes, and I hope other schools and teams follow this lead. But systems measures can only go so far. We also need individual safety layers, and I cannot overstate the importance of personal advocacy (both self-advocacy and advocacy of others).

If the quarterback had said, “Hey, Coach, I hit my head and don’t feel right,” or, if he was too dazed to speak for himself, if his teammates had told the coach about the injury and their concern, or if anyone who had seen the incident had spoken up and relayed the information to the coach, then the athlete would have been given prompt medical attention and not sent back out on the field to be head slammed again. People need to speak up. And they need to speak up to the people in authority – the decision makers – and not just grumble quietly or complain amongst themselves.

Earlier this week, the news hit that the first person in the U.S. had been diagnosed with the Ebola virus. Ebola requires close contact with someone who is symptomatic with the disease in order to spread. We have good infection control measures in U.S. hospitals. We have quick dissemination of news. We have the CDC (Centers for Disease Control and Prevention). We have state and local health departments. We have a lot of good systems in place. The patient had recently come from Liberia, where there is a current outbreak of Ebola. He developed symptoms, he went to the hospital, and he told some of the medical personnel that he had just recently returned from Liberia. And he was sent home with a prescription for antibiotics. And he continued to be symptomatic, exposing other people for days, until he returned to the hospital and received the correct diagnosis, appropriate medical care, and concomitant infection control measures.

In this case, the patient actually had communicated the important information, but it didn’t get to the correct people. A systems issue, to be sure. But more individual advocacy and strong communication would go a long way here, too.

I was not on the sidelines with the football team, and I was not in the emergency room where the patient first presented, but I have some pretty good ideas as to some of what may have been going on.

Both the sidelines of a football game and an emergency department can be bustling with action. Things are going on in different areas. Different teams (offence, defense, trauma, radiology….) and their respective coordinators (offensive and defensive coaches, head coaches, triage nurses, nurse practitioners, attending doctors, etc.) are functioning within a larger whole, trying to attain their overarching goal (winning a game, getting all the patients taken care of) while trying to maintain the well-being of each individual (the athletes, the patients). With so much going on, communication frequently suffers. And when people are nervous about speaking up, communication suffers.

Players may have been afraid to “argue” with a coach. They may have assumed the coach knew all the facts. The patient or his family or the nurse he originally spoke to may have assumed the ER doctor or Physician’s Assistant or Nurse Practitioner who discharged the patient had read the travel history and considered the possibility of an Ebola infection. Both situations just needed someone, anyone, to say to the decision maker, “Hey, wait a minute. Do you know that (I hit my head and can’t walk straight/the quarterback looks like he has a concussion/this patient was just in a country with an Ebola outbreak/I just flew in on a plane from Liberia)?”

Systems approaches. Individual back-ups. Individual care. Systems back-ups. All necessary to minimize the holes in the information sieve. Don’t skimp on the systems. But also never be afraid to plug the holes in the systems yourself.