Values & Vaccines

Contributor: Diana Dilger – Health Writer, Emmi Solutions

Everybody buckle your seatbelts. I’m about to get into something that, until recently, wasn’t a controversial topic but now brings out the boxing gloves at its mere mention: vaccines. As I’m sure anyone who’s been alive the last ten years can testify, vaccines have become one of the most heated discussion topics in everyday healthcare.

Diana Dilger

Diana Dilger

Regardless of the side you fall on, I wonder if there isn’t a way to tackle this debate without putting off people who might otherwise be brought around to your way of thinking. Rather than trying to refuse your doctor’s perspective or strong-arm your patient into something he or she doesn’t believe in, why not try the same approach as shared decision making?

Sure, typically shared decision making is used when there are treatments that are more or less equally valid in dealing with the condition. However, the true basis of it is listening to the patients’ values and ensuring that they understand the benefits and risks of each of their options. Why can’t this same tactic be applied to vaccines?

Think about it. Let’s say a patient, Amy, comes into Dr. Smith’s office. Amy does not want to vaccinate her child. Perhaps she thinks it may cause autism. Perhaps she is of the mindset that Big Pharma is pushing unnecessary drugs on her child and she prefers clean living. All of which is understandable with the information she has access to and the values she holds.

Meanwhile, Dr. Smith is adamant that vaccines are proven to keep diseases at bay that can render a child very ill, cause permanent damage to the child or even lead to death. He feels it is his responsibility to inoculate Amy’s child.

But let’s say Dr. Smith can put those thoughts aside for a moment when Amy tells him she doesn’t want to vaccinate her child. Let’s say he asks, “May I ask why?” instead. That one little question shows interest, allows Amy to explain herself without feeling attacked and allows her to feel her doctor is listening to what’s important to her. Continue Reading »

Contributor: Kelly Hawthorne – Medical Advisor Program Manager, Emmi Solutions

Kelly Hawthorne

Kelly Hawthorne

My father will tell you that one of his greatest accomplishments is having named me. When he said it out loud to my mom, it just fit. My family has always believed that there’s power in words and by claiming something, you give it authority, meaning. As a rule of thumb, you don’t claim the negative things, especially as it relates to your health.

Growing up, I watched my dad labor intensively to provide for us. Having a business in transportation meant driving for hours upon end, and ultimately sitting and eating in an upright position all day. He was so busy that he barely had time for himself and rarely saw a primary care physician. I often wondered what his occupation was doing to his health. But he didn’t feel as if he could just stop or slow down, when there was always a mountain of bills to pay.

So when my mother phoned recently to say he’d been hospitalized overnight, the wondering was over—something was really wrong.

I got to his hospital room as soon as I could and found him looking idly at the TV screen. He was surprised (and happy) to see me, but exclaimed that he was fine and there was nothing to worry about. When the nurse came to check on him, I pulled my mother aside to get the latest info. Apparently, his blood sugar was 3x what it should’ve been and tests were still being run. “They haven’t pronounced him with anything!” she quickly added. Yet, as I scanned the pale walls everything had D-I-A-B-E-T-E-S spelled out. His inpatient meal menu, for example, literally said “NEW DIABETIC” at the top. Right beside it, there were papers on the importance of carb counting for Type 2 Diabetes. Even as the nurse left to switch shifts, there was talk of Metformin and glucose monitoring, but no one ever looked us in the eye to confirm what seemed pretty evident to me. Why wouldn’t anyone just say it?

Now, I could’ve been jumping the gun since some test results weren’t in, but knowing there’s a history of not wanting to accept illness in my family, this seemed like a potentially dangerous situation. By keeping quiet, how would that affect my dad getting better? How would not “claiming” a diagnosis prevent us from tackling this head on? Continue Reading »

Contributor: Dani Alcorn – Health Writer and AMR Coordinator

Do you know someone worried about Ebola? Chances are good that you do.

Dani Alcorn - Health Writer, Emmi Solutions

Dani Alcorn

But there are actually many reasons why we don’t need to be as concerned as the news anchors might lead us to believe. Sometimes it’s tough to find the facts when the fear is so strong. Here’s some key info to help tamp down the hype.

It’s true Ebola is a scary disease. It belongs to a class of viruses called “hemorrhagic fevers” (even the name is frightening) that damage organ systems, blood vessels, and impact the body’s ability to regulate itself.

To date, there have been about 13,500 cases of Ebola (a little more than half of them laboratory-confirmed) and almost 5,000 deaths.

The vast majority of cases have been reported in 3 West African countries: Liberia, Guinea, and Sierra Leone.

Only 3 cases have been diagnosed in the US (plus a handful of healthcare workers evacuated from West Africa).

Media outlets have kept Ebola at the forefront of America’s mind. A Harvard School of Public Health poll found that more than 50% of US adults are concerned about a large Ebola outbreak in the US within the next 12 months.

While this concern is understandable, here are 3 reasons why we don’t need to be worried about an Ebola outbreak in the US.

1. Ebola patients aren’t contagious until they’re symptomatic.
People with Ebola are only contagious once they are symptomatic. So during the incubation period (the time between exposure and developing symptoms) the person can’t pass the virus along. Symptoms of Ebola include: fever, severe headache, muscle pain, weakness, fatigue, diarrhea, vomiting, stomach pain, and unexplained bleeding.

With some other diseases, people are able to pass the illness on to someone else before they know they are sick. For example, people with the flu can pass it to other people 1 day before symptoms begin. So even a coworker who stays home once they’ve started sniffling and sneezing can spread the flu before realizing they’ve got it.

2. The Ebola virus can be stopped with disinfectants.
Fortunately, the Ebola virus can be halted with typical hospital disinfectants (like household bleach).

When traveling to and from Ebola-affected countries (a low-risk activity), the World Health Organization recommends using an alcohol rub throughout the day and washing your hands with soap and water when they are visibly dirty.

3. Ebola is NOT airborne.
Ebola is spread by contact with bodily fluids (like blood, urine, or feces). It is NOT spread through the air or by water. According to the CDC, there is NO evidence Ebola is spread by coughing or sneezing. Continue Reading »

Contributor: Geri Lynn Baumblatt – Executive Director of Patient Engagement

Hemodialysis. Opioids. Blood Transfusion. Statins. Transplant. Surgery. Immunomodulators.

The list could go on but the overarching question we face is: when are these options too much or too little treatment?
When are medications like statins and opioids truly beneficial? And where does the trade-off between benefits and side effects drop off for an individual? Clearly, helping people understand their condition, the treatment, the tradeoffs and so on can lead to more appropriate utilization of care with improved outcomes.

This is easier said than done.

As Gary Schwitzer wrote, people are barraged with media messages that are hard to filter and often misleading, while Bruce Lambert described how the combination of low health literacy, complexity and fragmentation of healthcare information makes it increasingly difficult to make good care decisions. Similarly, Lygeia Ricciardi shared her own personal challenges trying to understand health coverage despite having extensive experience with health policy.

So what can we do?

Beccah Rothschild of Consumer Reports explained how national campaigns like Choosing Wisely offer free resources to help people decide whether a screening is right for them. Expert Patient or ePatient, Casey Quinlan shared her own tips for being a savvy patient while Renata Schiavo explained how participatory planning is another available tool to help address the health literacy needs of vulnerable populations. Related, health writer Emily Azari theorized on how a system built on everyday language might offer a more humane experience and lead to more appropriate use of preventive care with less reliance on Emergency Room visits. Insights like these are good starting points for devising applicable strategies.

Paul Barr discussed how something that seems as straightforward as a blood transfusion may often be overtreatment. The average person is not equipped to know to ask whether a transfusion is truly needed at the time of treatment.

Looking from the provider perspective, clinicians don’t know how quickly or severely conditions like Crohn’s may progress. Dr. Corey Siegel asks: ‘In those cases, what is “just right” treatment?’ Educating patients about their disease and options and working with them to make these decisions is essential.

Health Literacy and Under-utilization
Under-treatment and under-utilization is also a serious problem. Karen Mulvihill explains how common misconceptions about palliative care results in many people not taking advantage of the opportunities available to them to improve their quality of life. I also looked at the need for education and candor to improve utilization. When we help people with conditions like end stage renal disease fully understand their health while also being candid about their prognosis, they’re more likely to take advantage of options like hospice care.

But educating patients about these complex issues shouldn’t happen right before it’s time for a decision. As Angie Newman says in her piece on dialysis, “If conversations around treatment options start early enough, there’s plenty of time to discuss things over weeks and months.” Kevin Fowler looked at the next phase of renal disease and why kidney transplant outcomes aren’t better in the United States. He also included one of the things that we all know we can do better which is “education and counseling about immunosuppressant medications should be a continual process rather than a 10 minute discussion while being discharged from the hospital.” Continue Reading »

Contributor: Geri Lynn Baumblatt, Executive Director of Patient Engagement

Clinicians live and breathe medicine. And I don’t want them to stop being obsessed with blood counts, better surgical approaches, and new treatments for common infections. But the flipside of this focus is the tendency to forget what it’s like not to know.

Many people live with health conditions for years

gbaumblatt

Geri Lynn Baumblatt

and still don’t really know what their condition is, whether it might lead to a more serious complication or other long term consequences of their condition. Even when we make an effort to educate ourselves, we really never know if there is a gap in our knowledge.

And when it’s time to make a decision about our health care, those knowledge gaps can contribute to over- and under-treatment. So how do we know if the choice we’re making is the right choice for us? As David Dunning and Errol Morris explain in The Anosognosic’s Dilemma, “the skills you need to produce a right answer are exactly the skills you need to recognize what a right answer is.”

Gaps in Knowledge
When people with diabetes start to show signs of chronic kidney disease (CKD), they’re referred to a nephrologist. But missed appointment rates are high because they often don’t understand why they’re being referred in the first place. After all, who has time to show up for what seems like a random appointment?

And while they may have been told at some point, “diabetes will affect your kidneys”, what does that actually mean to most people? Unlike saying “this condition will affect your eyes and vision”, translating “affect your kidneys” into a message that conveys a future involving kidney disease, dialysis, and transplant often isn’t communicated and definitely isn’t understood. At what point do people get a candid explanation about the trajectory of their condition? Of course if they never see, or delay seeing, a nephrologist, this can also lead to delays in a diagnosis of any kidney disease when fewer treatment options are available, leading to underutilization of care to slow the progression of the disease.

When someone has been living with a progressive condition for a while, it’s easy to assume they and their family understands their prognosis. But a study recently found that 92% of patients in the final stage of CKD, called end stage renal disease (ESRD), thought their health would remain stable or improve over the next 6 months.(1) Is this optimism, or did anyone walk them through the reality of their diagnosis?

I recently sat in a room with six people who have late stage kidney disease (nearing ESRD). All but one was convinced dietary changes were all that was needed to address their condition. Only one of the six understood that at this stage, dialysis and transplant were treatments he needed to consider. This has implications, not just for utilization of kidney transplant, but when families understand more, it may also help them consider kidney donation. And understanding the patient’s condition can also affect the utilization of hospice care later on. Today, only “a minority of dialysis patients use hospice”, even when they withdraw from dialysis.(2)

We Don’t Know What We Don’t Know
When people hear about treatments, it’s easy to make assumptions. For example, when women have uterine fibroids, especially if they hope to get pregnant, a treatment they often gravitate towards is myomectomy. Unlike a hysterectomy, with a myomectomy, the uterus stays in place and the fibroids are removed. Sounds like a home run, right?

Well, first, there’s the assumption the fibroids are the reason a woman can’t get pregnant, which may or may not be the problem, or the only problem. And like any operation, a myomectomy can create scar tissue in the area – so in this case, in the uterus itself. And new scar tissue can actually make it more difficult to get pregnant. So once these knowledge gaps are addressed for a woman who wants to get pregnant, it becomes clear that removing fibroids and leaving the uterus in place does not guarantee she will get to reach that goal. Continue Reading »

Guest Contributor: Lygeia Ricciardi

My Experience
First I got a letter from the hospital, where I’d given birth to a baby girl a few months prior. The letter included a bill for several thousand dollars for services associated with the delivery. “Nah, that doesn’t apply to me,” I thought, “I have health insurance, and I explicitly paid extra for ‘maternity coverage’”. But then there were more bills, followed by menacing phone calls from a collection agency: “If you refuse to pay, we will seize your car, home, or other assets.”

Lygeia Ricciardi

Lygeia Ricciardi

Surely there had been some mistake? I dug into the details of my insurance policy and even had it examined by my employer’s law firm. Aha! In the fine print description of the optional maternity package I had elected via my insurance policy was a stated limit of $3 thousand per pregnancy. Really? So that meant I’d already surpassed the financial limit through ultrasounds before I’d even had the baby! I’d had no idea, and no one alerted me at the time, when I could in theory have navigated the rest of the pregnancy with containing costs in mind. When all was said and done, my husband and I paid $14 thousand out of pocket for a pregnancy and birth we assumed were covered by insurance—and this was nearly a decade ago.

The experience was painful, not just because of the financial hit and the hours my husband and I spent poring over paperwork and stuck in phone tree hell. It was also disheartening to learn first hand what a mess the American health and health insurance industries are, especially from the perspective of a patient. Even with a high level of education and experience working in health policy, I felt lost, threatened, and ultimately wronged. I shudder to think of the challenges faced by people with a lower literacy level, fewer financial resources, and health conditions that may render them weak, incapacitated, and afraid.

My (Lack of) Insurance Coverage
One of the reasons my bills were so high is that, once I’d reached the $3 thousand cap, the hospital considered me uninsured, and its various departments proceeded to bill me directly, in piecemeal fashion, above the negotiated rates they’d arranged. So I received multiple bills from diverse offices for services I couldn’t identify, and had to pay through the nose for them. Based on extrapolation from the findings of a recent survey, The Cost of Having a Baby in the United States, had I been fully covered by insurance, I would have paid about $500 out of pocket for the birth in 2005, rather than $14K http://transform.childbirthconnection.org/reports/cost/ . The negotiated rates were never even revealed to me, and there was no central authority to speak with. However, $17 thousand (the $14 thousand I paid plus the $3 thousand my health insurance paid) is definitely above the average total price for a vaginal birth, which was $12,520 five years later in 2010 according to the survey. This negotiated rates system, in my opinion, is unethical in a health context. Is it reasonable to slam sick or injured individuals without insurance with the highest rates—rates it’s awfully hard to negotiate once the service has already been provided?

Further adding insult to injury, I also learned that I would likely have paid significantly less out of pocket under my particular policy had I had a c-section, which is generally about 50% more expensive than a vaginal birth. This is especially galling since I had elected not to use pain medications, hired my own birth coach (or “doula”), and enrolled in several months of prenatal yoga—all measures that contributed to keeping me and the baby healthy and to avoiding interventions such as a c-section. Through my own investments, I saved my health plan money… for which I was ultimately penalized. Continue Reading »

Guest Contributor: Gonzalo Bacigalupe, EdD, MPH – University of Massachusetts Boston, American Family Therapy Academy

Chronic pain, a persistent and recurrent pain not related to cancer pathology is common, about a quarter of us suffer it. Despite its dramatic impact on quality of life, it has a bad reputation. Patients are dissatisfied but health care providers are too. Opioids are often prescribed but just mentioning the word has negative undertones. The fear that patients will misuse them or are some sort of an addict leads to a further burden. Not only the patient has to suffer the physical pain and its emotional and psychological consequences but patients have to also endure a continuous suspicion about medical treatment.

Gonzalo Bacigalupe

Gonzalo Bacigalupe

In research interviews of people living with chronic pain, they are clear about what they think: Doctors “don’t want anything to do with you.” Their deep distrust and dissatisfaction with their physicians is contrary to any call for shared decision-making and open communication between clinicians and patients. Patients perceive clinicians as blaming them, of lying about their experience of pain, and of drug addictive seeking, regardless of the presenting pain even if congenital. It is as if having chronic pain makes patient undeserving of treatment. They “give you the cold shoulder,” a patient told me in a focus group.

Quality of care in the case of chronic pain is, as a result, low. Feeling unheard and consistently not respected by clinicians, patients deepen their sense of isolation, stigma, and may end hiding an addiction that requires a genuine clinical intervention.

What makes a difference? Patients look for affirmation and for clues their clinician is listening and paying attention to their story. Since chronic pain requires a subjective assessment, paying careful attention to the nuances of the patient’s context—family and work particularly—is not optional. Numbers on a scale do not mean much for a patient whose pain is constant, recurrent, and not getting better.

Chronic patients prefer a clinician who is also open to alternative medicine strategies and who is not scared of prescribing them as well as learning from the patient about what of those really makes a difference. Yoga, acupuncture, massages, and other strategies can be very effective for patients. Patients appreciate making them available within the context of clinical care. Integrating mental health and strength-based psychotherapy approaches can also be helpful, countering the usual stigmatization of chronic pain as a hypochondriac behavior or even loaded mental health diagnosis. Continue Reading »

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