Health misinformation from a patient perspective [PODCAST]

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“What on earth are we doing here, folks? To try to save a tanking economy, workers were sent back to their jobs much too early, causing again a spike in cases of the virus. I realize that the loss of a paycheck is a major traumatic situation for any breadwinner, but so is the loss of life.

Our doctors and nurses are doing their best to treat COVID-19 patients under their care. Many are putting themselves in harm’s way and risking their health to care for those hospitalized. Some have been separated from their own families so as not to potentially carry the virus to them. And how do we repay them for their valiant efforts? By ignoring the guidelines put forth by the CDC and all other medical institutions. That doesn’t make sense.”

Michele Luckenbaugh is a patient advocate.

She shares her story and discusses her KevinMD article, “The loss of a paycheck is a major traumatic situation. The loss of life is worse.”

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Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Today on the show, we have Michele Luckenbaugh. She is a patient advocate, and she wrote the KevinMD article “The loss of a paycheck is a major traumatic situation. The loss of life is worse.” Michele, welcome to the show.

Michele Luckenbaugh: Thanks, Kevin. It’s an honor to be with you here today.

Kevin Pho: So we’ll get into your article in a little bit, but first off, can you share your story and your journey to where you are today?

Michele Luckenbaugh: I was born and raised in central upstate New York, went through the state university system there, graduated with a degree in secondary mathematics education, and taught high school math for a period of years. I got married, then moved to South Central Pennsylvania, where I currently reside, and raised my family here. Everything was kind of going great in my life until, let’s say, the year 2011, when I suffered a heart attack and was hospitalized. Certainly, I want to take a brief moment to thank my cardiologist, my primary care physician, and nurses of cardiac rehab for getting me past that particular point in my life.

And as so often is the case, when somebody faces a kind of life-threatening situation, they like to give back to those individuals that helped them get through that. And so what I’ve done is I’ve joined some health-related organizations as a result of that. One of them is the Patient Partner Program, which actually is a nationwide program. Its goal is to give the patient perspective, the patient viewpoint, to the practice that they are a member of. Sometimes, as clinicians, as nurses, as staff, many of the procedures you do are done repetitively during the course of a day, during the course of a week, and through the eyes of a patient, there might be a better way to go about doing a procedure to a given patient, and at the same time, it may be making it a bit more efficient procedure. So that’s one of the major things we do in Patient Partners.

Another group that I became a member of was the Cardiovascular Family Patient Advisory Council, and over the years, we’ve done much in the line of feedback to my health system in terms of improving the care of the cardiac patient when they are hospitalized. Most recently, we’ve given our feedback on the construction of a new cardiovascular building, which we’re all excited about. It’s to open next year, 2021.

And last but not least, certainly, I’m a member of the Helping Hearts group locally. That is a group set up for heart patients. As a member of that organization for a period of years, I visited cardiac patients that were hospitalized, either pre- or post-procedure. And you know, Kevin, I think it’s very important that a patient undergoing this situation receives some sense of encouragement that life can in fact be waiting for them after the procedure, and in many cases, it can be better than it was. And to be honest with you, many times when I finished my visits at the hospital, I left being so thankful for the conversations I’ve had. And so it’s a very worthwhile group of people.

Kevin Pho: So you’ve written several KevinMD articles, and you’re obviously involved with a variety of patient advocate groups. What are some messages and themes that you want to share with my clinician audience from the patient perspective?

Michele Luckenbaugh: I think one thing that I’d like to maybe emphasize, coming from the standpoint of being a patient, is let your voice be heard. If there’s something of concern that’s going on with you in your life, affecting your health, voice that to your physician. I know primary care office time is somewhat limited. Come into the appointment maybe with certain key points that you wish to address to your doctor, so that the time that you do have with him or her is wisely spent. That would probably be my key advice for all patients: to make sure your story is heard.

Kevin Pho: Let’s transition into your KevinMD article, “The loss of a paycheck is a major traumatic situation. The loss of life is worse.” Now, for those who haven’t read your article, can you walk my audience through it and share the story of why you decided to write it?

Michele Luckenbaugh: Well, if we go back to the month of March of this year, that’s about the time when the pandemic, COVID-19, was hitting the United States, and specifically my state of Pennsylvania. At the beginning of it all, we were getting conflicting information over the TV news, and our president was telling us, and I remember that distinctly, this is something similar to the flu, it will come and it will go, nothing to be overly concerned with. And initially, I thought that was the case. But as you well know, and all your viewers are certainly aware of, here we are approaching the end of October, and at this point, there’s really no end in sight. There are approximately 215,000 people who have died from the coronavirus, and approaching eight million positive cases in just the United States alone. So until there is a tried-and-true vaccine that becomes available, which, according to what I’ve heard, for the general public is not going to happen until sometime next year, we’ve got to do all within our power to protect ourselves.

I was fortunate in that the state I live in, Pennsylvania, our governor took a very proactive approach. He closed our public school systems down in March, so learning became virtual. He strongly recommended wearing a mask when we were out in public, social distancing, and proper hygiene. We were given daily updates continually throughout this entire pandemic. And so basically, he was following all the guidelines that were given out by the CDC.

And unfortunately, not all the governors followed suit, and it kind of, to me anyway, seemed it was divided against party lines, red versus blue. The governors who were following the instructions from the executive branch seemed to be kind of taking a laissez-faire attitude with regards to the directives, and as a result, eventually we saw the numbers, the case numbers, the deaths, in those states rising. So until fairly recently, the last couple of months, they’ve realized that yes, it might be a good idea to follow the mandates that were given from the CDC, and again, mask wearing, avoiding large crowds, and proper hygiene.

Again, I’m thankful. That dictate was not exceptionally popular in our state. I mean, there are a number of people to this very day that complain about the fact that they have to wear a mask, and that is a requirement in our state: To enter any business, you have to be wearing a mask. But I’m thankful. I’ve agreed with our governor from the very beginning. Just like in a family, children will follow the behavior patterns that they notice their parents giving forth, and it seems in many cases that’s what happened here with the governors in some of the states.

The beginning of this pandemic was very stressful, and again, that caused me to kind of sit down and write this article. Health systems were left with a shortage of needed supplies: PPE, testing supplies, and ventilators. And the thought was: Are we going to have enough ICU space available for the influx of patients? Now, hopefully, at this point in time, all the health systems have made an effort to build up their stockpiles. We’re facing, coming this fall, not only the COVID virus continuing on with us, but also the flu, so that’s a double whammy. And certainly, it’s my hope and prayer that we’re all well prepared for this.

Kevin Pho: Now, one of the biggest frustrations that we have from the clinician side is the mixed messaging, and you alluded to that earlier. You have one message coming from the federal government, and sometimes you can have conflicting messages coming from the CDC, public health officials, and even various governors. Now, from a patient standpoint, how unified is the messaging that you’re hearing in your community? Are you hearing different things as much as we are here on the clinician side?

Michele Luckenbaugh: Yes, and it’s pretty obvious at this point in time. Earlier on, only essential businesses were allowed to be open in my state. Now pretty much all businesses are allowed to be open. There are guidelines in terms of the percentage of occupancy that can take place in various places, retail stores and restaurants. But you will see, in going into a particular retail store, they will wear the mask, because again, it’s mandated that they do wear a mask to enter a place of business. But you’ll see people in some of the larger stores, once they’re in, they’ll have that mask pulled down, not worn properly, kind of disregarding the rules and regulations, so to speak. And to me, when I see that, it, I don’t know, strikes me as a sign of selfishness, because we were instructed: Not only does wearing a mask protect you to a certain degree, but it’s certainly protecting the people around you.

So in terms of information, I don’t usually rely upon social media. I will go to some trusted sites, such as Kaiser Health News, Johns Hopkins University, and Cleveland Clinic. Our own Department of Health in Pennsylvania has a very good website with respect to the coronavirus, and even my personal health care system, on its web page, supplies data relevant to what’s going on within the counties that it serves.

Yeah, it does anger me when I see people out on the street or whatever, kind of just disregarding what our scientific and medical communities are telling us. The people that serve and have been serving on the front line in medicine, treating the COVID patients: Out of simple respect, we should be trying to protect all of us by following those guidelines.

Kevin Pho: Now, when it comes to messaging, what are some of the things that clinicians can do better? Whenever we see patients who may get their information on their favorite television network that conflicts with what we say, what are some ways that doctors can convince patients that some of the things that they’re reading on social media and some of the things that they’re watching on television networks are in fact false? Are there any tips that you can give from a patient perspective?

Michele Luckenbaugh: Well, I might point out, probably in the past I’ve kind of trotted into my primary care appointment and brought up something that I might have come across on Google or other medical-oriented websites, and I’ll pose that to my doctor. And I think it’s all in the manner in which the physician presents the actual facts to that patient in front of you. One thing I might say, in terms of coming from the physician, is try not to have kind of a condescending appearance. Present the facts and say, “Well, there are so-and-so studies that actually say the following. So what you may or may not have heard on a social media site isn’t the beginning and end of the truth. Here’s what the information is.” It’s certainly up to the patient to evaluate it, but hopefully they will listen to someone who’s actually truly educated in that field.

Kevin Pho: We’re talking to Michele Luckenbaugh. She is a patient advocate. She wrote the KevinMD article “The loss of a paycheck is a major traumatic situation. The loss of life is worse.” Michele, I’m so thankful you’ve written dozens of articles on KevinMD from a patient perspective. Now, what is your goal of writing these stories? You know that I have an audience primarily of clinicians. What’s the goal of writing stories from a patient perspective on a primarily clinician-focused site?

Michele Luckenbaugh: Well, to be totally honest with you, Kevin, writing has become for me, probably right after I suffered my heart attack, a way of me really even emotionally my stress, and again, this was the case with this COVID article specifically. Many times, I see what’s going on in health care. I have one of my children who is actually involved in health care, a family practice physician. So I’m kind of sitting on the fence between patient and what I know in fact takes place in the medical professions, and how much effort it takes to become a doctor, to become a nurse, any position within health care.

So I would like to, and many times, give the patient’s perspective. What are they noticing on the sidelines, whether it be on a specific health topic or a topic that is relevant to what, well, I don’t like to use the word “providers.” I think that is a misnomer. What our physicians, nurses, and physician assistants are all facing in practicing medicine in this time and age.

Kevin Pho: Now, what’s the number one tip that clinicians can learn from patients?

Michele Luckenbaugh: It probably relates to something I said a little while ago: Learn the ability to listen. Many times, you can learn an awful lot about the story if you just give the patient the opportunity to say it. And there are things that might be going on in that patient’s life that not only may affect them emotionally, but some of those issues might in fact be directly affecting their health. So it’s maybe asking one or two questions, and I think many physicians might be surprised that the floodgates will open up, and you will learn quite a bit about that patient that’s sitting directly in front of you.

Kevin Pho: And my final question, Michele: What is your take-home message that you want to leave with the KevinMD audience?

Michele Luckenbaugh: Well, it would be this: Whether your feet fit into the shoes of a physician, or fit into the shoes of a nurse, a social worker, a store clerk, or a garbage collector, for that matter, if there’s something that’s going around you in this world that doesn’t seem quite right to you, that seems maybe a bit unethical, take some form of action. Write, for example, an op-ed to the editorial section of your local newspaper. Contact maybe your local TV station; ask them to maybe do an investigative report on that particular issue. Write letters to your representatives in Congress. Write a letter to your governor. Heck, for that matter, write a letter to the president if there’s something of a national concern.

The point being, don’t be complacent. Don’t wait for the other guy to express this, because the fact is, you might say, “Well, for one thing, I’m one person. What’s it going to matter?” Well, I’m one person, Kevin. I’m sitting here with you today talking. The fact is, though, if you have an issue of concern, the odds are there’s a whole slew of people concerned about the same issue, and together there will be a loud clamor if we join our voices. That’s what’s needed to reach the ears of those in power to consider making the positive change that we need in this world. And in terms of the late Representative John Lewis: “Make good trouble.”

And my final advice would be: Vote. We’re in an especially important time. Whether you cast your ballot through a mail-in ballot or showing up locally at your polling place, cast your vote. That’s a great way to get your viewpoint across, and again, this year it’s especially important. So please vote, everybody.

Kevin Pho: Michele, thank you so much for sharing your insight, and thanks again for being on the show.

Michele Luckenbaugh: Thank you, Kevin.

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