Hearing Hoofbeats, Thinking Ebola: The Scarlet 'E'

When the news media revealed that townspeople in Fort Kent, Maine had chosen to ostracize their neighbor and healthcare hero, nurse Kaci Hickox, because of a presumed #Ebola virus infection, I was reminded of Hawthorne’s classic novel, “The Scarlet Letter,”[i] where the character Hester Prynne was required to wear a scarlet letter ‘A’ on her dress after being found guilty of adultery with an unidentified man. In our real-life scenario, nurse Hickox was ordered to quarantine and was shunned by townspeople, some who went so far as to threaten a boycott of a local pizzeria if she were to dine there - even though Hickox hadn't a health problem.

Has fear of Ebola come to this? Has irrationality so consumed people’s minds that they believe an infection can ensue if they eat a meal in the same room as a person who has no infection?

Given what can best be described as insufficient education fueling fear, nurse Hickox may have fared better had she worn a scarlet ‘E’ on the front of her shirt when she returned to the USA. From that point forward, identified by 21st century social branding, perhaps Hickox could have walked outdoors or enjoyed riding her bicycle knowing that, in good conscience, she had given her neighbors due notice that she may carry a deadly disease for which she showed no symptoms and had twice been blood-tested as negative for infection. Absurd.

Should all persons returning from West Africa be required to wear a scarlet ‘E’ on their clothing to signify possible exposure or infection by the Ebola virus? How about a big ‘Q’ for quarantine? Or maybe a removable countdown quarantine patch that starts at 21 and is changed daily as the person goes through the timeline? Surely some legislator will support the idea that the public has a right to know if one of their neighbors may have been exposed to the virus - and require that suspects wear a mark so that they may be duly shunned for 21 days by all who fear magical transmission and infection. Ridiculous!

People, we cannot allow collective fear and ignorance to transform into paranoia and hysteria. We can’t allow a national cognitive breakdown to overwhelm evidence-based assessments and decision-making, or to otherwise rule our thought processes and actions. We need to get a grip on the mass hysteria that’s been slowly creeping into the minds of our nation’s people. Prominent media healthcare professionals like Dr. Richard Besser have done well to provide the public with truthful, palatable information and education - but Besser was also stigmatized and ostracized after returning from his trip to Liberia.

We need reliable information sources. Sadly, this isn’t the first time we’ve received wrong information from what we thought were bona fide experts. I was a clinical nurse in the early 1980’s when the public was made aware of AIDS. There was a lot of disinformation and misinformation released to both the public and the health care community. Infectious disease specialists told nurses and others that we couldn’t catch it – while we handled sharp, bloodied instruments from starting intravenous lines, giving medications, performing wound care and collecting blood specimens; and while we were regularly exposed to all manner of body fluids. This turned out to be especially bad for those who contracted the disease by occupational exposure. When the truth came out about how the AIDS virus was spread, some healthcare workers refused to take care of HIV-positive patients - even after the initiation of universal precautions, prevention programs, administrative controls and post-exposure guidelines. Many educated healthcare professionals succumbed to fear. I get it.

Much has gone wrong with the management of Ebola in Texas, New Jersey, New York and Maine, to the point that people (and states) seem to have lost faith in the Centers for Disease Control (CDC) as a trustworthy source of information and guidance. Some states are making their own rules. The court system is involved. The CDC has lost credibility and now has severe branding issues. The organization may do well to hire experienced crisis communication professionals who can help regain public trust and confidence, in addition to tightening-up its own knowledge, policies and practices - because it appears that a truck could drive through the gaps.

Is that enough? No. The World Health Organization (WHO) seems to think we’ll have a vaccine soon enough. Perhaps all this attention has brought in more research dollars. Isn’t that how it went with HIV/AIDS? Beyond that, we need to develop a plan of action for mandatory travel immunizations, screening, illness monitoring and compliance – as soon as possible. Public education, with special attention to health literacy, must be a high priority with all efforts.

We are very fortunate to have healthcare professionals and workers who consider their own lives and examine their own ethics - and make the choice to provide lifesaving services all over the world to victims of serious diseases. How these healers come to be spurned and condemned instead of being honored as heroes is beyond comprehension. If not for these dedicated individuals working on the front lines, not only will countless lives be lost, but we will fail to learn how to manage the diseases that befall our global human community. Without that knowledge, how will it be for you or your loved ones if no one is there to take care of you, or if we have no idea how to help you, because your fear reactions today caused many to decline an opportunity to be part of the solution?

Nurse Hickox and all of the healthcare professionals and workers who tirelessly and selflessly provide the best care possible to those in need, around the world, are to be honored for enduring inhumane conditions and for risking their own lives so that others may live and science may learn.

Come on, America – we’re better than this. We can solve the problem without hysteria. We’ve survived many other viral outbreaks and catastrophes, and we must press on.

#Ebola #EbolaVirus #EbolaEducation #EbolaOutbreak #EbolaPhobia #EbolaFatigue #EbolaStigma #DrRichardBesser #CDC #CDCEbola #NIHEbola #WorldHealthOrganization #KaciHickox #NinaPham #AmberJoyVinson #NancyWritebol #KentBrantly #RickSacra #CraigSpencer #EbolaSurvivors #ThomasEricDuncan

Claire Santos is a registered nurse and healthcare communicator in Honolulu, Hawaii. She can be reached at asknursesantos@gmail.com. You can follow her on Facebook at Ask Nurse Santos, and on Twitter at @nursesantos.


[i] Hawthorne, Nathaniel. 1850. The Scarlet Letter. http://www.pagebypagebooks.com/ . Accessed November 2, 2014.

Dr. Oz: Healer or Pitchman?

Both, I think.  A hybrid.  Let me explain.

Yesterday’s testimony before senators on Capitol Hill, which seemed an odd and embarrassing display for a fatigued and slightly disheveled-appearing Dr. Mehmet Oz, was quite telling. The PR spin (or framing) was immediate and discouraging. In the video clips that I watched, Dr. Oz tried to shift the focus away from his own questionable performance to that of the profiteering shady entrepreneurs who've been benefitting from his immensely consumer-influential product pitches. He claimed no financial benefit from his promotions, which really wasn’t the point. Personally, I needed for Dr. Oz to own his share of the problem of making flamboyant and misleading recommendations. Perhaps the posted video clips didn’t show that, so I make no judgment.

My feeling is that, if Dr. Oz wouldn’t try to convince people to buy into his testimonials about “lightning in a bottle” and miracles and fat-busters with guaranteed results, the shady characters would have much less business. Snake oil salespeople and parasitic cottage industries have existed forever, and it’s a societal problem that one person can’t fix. That said, Dr. Oz, you can only change you, and it’s on you to reset the integrity of your show so that it’s back to your original vision of helping the public.

I’ve been watching Dr. Oz’s TV show since it started. As a health care professional it’s important for me to be familiar with my community’s sources of health information, and I was curious in my own right. I watched, and I tried more than a few of his suggestions along the way.  

In the beginning I was surprised by Dr. Oz’s ability to get people talking about their poop. People don’t usually talk about their body waste in public, and physicians often are not known to be great communicators with lay people. Those factors combined to make Dr. Oz a groundbreaking TV show. It was raw, grass roots, for the people, and moderated by a bona fide clinical health care professional. Most importantly, it educated the public in plain language and helped to empower people to take charge of their own health situations. The Dr. Oz Show had the potential to be a dream-come-true for health educators and clinical practitioners – and most importantly our patients.

Even then, however, I wondered how the show would sustain its momentum. Sure, it piqued people’s curiosity that others were discussing private physical matters in public, but you can only stretch a poop so far, so to speak. How long would the public stay interested?  My other concern involved the fact that, although Dr. Oz is a very successful cardio-thoracic surgeon (really quite admirable), he doesn’t have expert credentials in every, or many, aspects of health and wellness. No one does. Is it really fair to ride your MD and your personality to areas where you’re not a bona fide expert?  Doesn’t that make you an entertainer more than an expert? Truthfully, I was trying some of Dr.Oz’s suggestions without experiencing the promised outcome. For example, raspberry extract and super fiber effected no changes in my body, but I quickly noticed that my vitamin store was out of stock of the products that were mentioned on the show. I became increasingly uncomfortable that the show could go down the wrong path.

Over time I realized that Dr. Oz (or the show's decision-makers) had other people conducting research into various topics that would be discussed on the show, and Dr. Oz would apparently read the teleprompter extolling the virtues or so-called miracle qualities of this or that product. Let’s face it – there seems no way he could vet all the reports and topics that were handed to him. There are only 24 hours in a day, and the man is still conducting surgeries and other ventures in addition to filming this show. I felt that he was running on faith, and perhaps being pressured by producers and sponsors to do what it takes keep the show rolling, to the point where the show and its visual demonstrations bordered on absurd. Soon enough, the topics and the product promotions became more and more “out there” with claims of miracles and guarantees, and I started to wonder if Dr. Oz was in control of the show at all. At some point it crossed a line with me, and I stopped watching for a long time, only recently returning to see that some changes have been made that made it even more incredible, and cheesy, in my opinion. At least there were guests with expertise in their health care specialty areas, but they seemed rushed through their presentations and they were speaking medicalese instead of plain language. Even Dr. Oz is sometimes speaking so quickly that he trips on his tongue. Too much information being crammed into too little time, using a language not common to all.

I’m not sure that Dr.Oz’s employer or sponsors would share the idea of slowing things down and reconsidering health literacy and relevant topics, as I continue to suspect their profit motivation as the cause of the shift in the show. Maybe it’s better to walk away.  The Dr. Oz show can do far greater service to the public than to continue as an hour-long infomercial.

When Being an Advocate Means Stepping Back

I’ve often said that nurses very uniquely walk the path with their patients, and I mean it exactly that way.  We’re not out in the hallway looking at the chart or sitting in a remote location discussing options with colleagues.  We’re right there, with the patient and their loved ones, physically and spiritually and otherwise immersed in the person’s care.

Nurses are with their patients in a most intimate relationship where we’re not only collecting private information, making assessments and assigning nursing diagnoses. More than developing action plans and monitoring outcomes.  More than cleansing wounds, administering medications, checking vital signs.  We’re hearing secrets, counseling, guiding, educating, training, comforting, bringing loved ones into the communication group, stepping in when needed to clarify a situation or to help our patients maintain position. We contact other providers, set-up interdisciplinary meetings, collaborate with colleagues – and bring it all back to the patient for informed decision-making.  We are, after all, advocates and healers. We know that any person under our care is special and worthy and entitled to our care. We know that true healing involves more than treatments and medications.  We are firm in our belief that the person is the owner of her or his own body and, except under extreme and defined circumstances, the person is responsible for any decisions made about their body.  We do what we can to bring the needed information to the table.

Comes the day, however, when the autonomy we promised our patients is put to the test because the patient’s decision is somehow painful or not what we were hoping for.  It’s a special kind of dance.  While suppressing our own feelings, we must hear the person’s questions and beliefs and desires, and hear the family’s disbelief and promises of support while in their own surreal state of shock, and resist any urge to stifle the well-meaning friends who launch into, “You can’t give up without a fight” that leaves the person feeling badly if they don’t choose the course of pain and nausea and vomiting.  We see the confusion, the guilt, the myriad emotions that come with the situation, and we think we know the best answer, but it’s not for us to decide.

The urge to take over and control the situation is strong.  We want to “fix” the person or make their last time in this life as pain-free and stress-free as we can make it.  We want to stop the people who seem to badger, pushing their own beliefs into the situation.  If not careful, we can cross the line between advocacy and paternalism, and strip the person of their own life’s decision-making in the name of “what’s best for everyone.”  Older nurses are well-versed in ministering to patients who were never told their diagnoses until their dying breath. We’ve been forced to be part of a well-meaning conspiracy that denied the person any chance of living the end of their life on their own terms.  Today’s nurses need not go there.  By the same rules, however, we also can’t decide for our patients.

Perhaps the most important role of the nurse advocate is in knowing when to step back. Once the patient indicates that they’ve got the information they need, and that they’re in full control of choosing their actions, we’ve done our job and it’s time to let go, at least for now. We may be called back.  Maybe not.  Painful as it may be, it was never our choice to make.