Patient Advocates Can Help

If you are having a tough time navigating medical care, patient advocates can help! Last week I was talking to a friend who recently tore the meniscus in his right knee. He was informed by doctor’s office personnel that he needs surgery. He had a few questions, so he requested a call from the doctor before he scheduled. The response: This is standard care for this type of injury and you don’t need to talk to the doctor. He’s going to tell you the same thing I’m telling you.

My friend was taken aback. As a former Division 1 college basketball player who continued his career playing Masters Basketball, he’s accustomed to superior medical care. He’s also used to being treated as part of the healthcare team. When I told him his experience was not uncommon for the average patient, he was shocked. He also wasn’t sure what to do next.

After some searching, I found the information for the associated hospital’s patient experience team and sent him a link. Unfortunately, it wasn’t as simple as a single search within their website. It took several tries with several keyword variations. This is also not uncommon. It is unfortunate.

The healthcare system is often hard to navigate. When you feel sick, injured, and vulnerable, it can be next to impossible. That’s when a patient advocate can help. If you have a family member who is capable and available to serve in this role, that is ideal. But many of us do not have that.

So, how do you find an advocate when you need one? If you use a clinic associated with a hospital, that hospital may have an office of patient experience. Sometimes it may be called the office of patient and family centered care (PFCC). Sometimes just using the keywords patient centered care will get you to the proper place. Other hospitals will have someone on staff called a patient advocate. If you don’t want to search online, call your local hospital and ask for the extension for the patient advocate or patient experience office.

Patient advocates may have a degree in social work or nursing, but they are not functioning in the same role as a hospital social worker or a nurse. They are more like your own personal communications team. When you run into an obstacle like the one my friend did, an advocate can talk to both parties and help find a solution that works for both.

They can also help you understand a doctor’s instructions, help you seek a second opinion, and help you sort through different treatment options. An advocate can assist your family in understanding how they can support you. Because they work within the system you are seeking to navigate, an advocate may have many avenues for solving a problem that you would not know about.

Not all advocates work for a specific institution. Some work for state health departments. Others work for independent services. When dealing with long-term care, you may receive similar services from an ombudsman program.

It’s always hard to ask for help, especially when you feel vulnerable. Learning about the programs available in your area when you’re well is a great way to prepare. The Beryl Institute gives awards to institutions and professionals that innovate ways to improve the patient experience. If you are a member of an underserved population, Centers for Medicare & Medicaid Services (CMS) may have a specialized program to assist you.

You are an important member of your healthcare team. It is important that the rest of the team collaborate with you to achieve the best outcome. That includes creating a treatment plan that considers what’s most important to you. In order to do that, the team must share information and treat you with dignity and respect. Anything less is unacceptable.

There is a shift toward prioritizing the patient experience because it has become a significant measure of hospital quality. That means, now more than ever before, patient advocates and patient experience specialists are available to assist you.

I wish this had been true when I was struggling to get a diagnosis for psittacosis and then celiac disease. But I am grateful things are changing. I feel better knowing that when I need them, patient advocates can help!

Self-Care vs. Healthcare? Hospital Dining – Food for Thought

Have your attempts to be healthy become a tug of war that feels like self-care vs. healthcare?

In theory, self-care goes hand in hand with healthcare. How often are we told that eating well, exercising enough, and getting enough sleep contribute to disease prevention? In fact, preventive care has dominated healthcare rhetoric in the US since Health Maintenance Organizations (HMOs) gained traction in the 1980s. It seems logical that healthcare and self-care would have become increasingly in sync since that time. If eating well, exercising enough, and getting enough sleep can help prevent and heal disease, why isn’t there more emphasis and support for those when I see my physician or visit the hospital?
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It is true that from 1985 until now, recommendations have increased for screenings to detect breast cancer, prostate cancer, colon cancer, cholesterol levels, diabetes, and STDs. Most insurance covers such screenings as well as well-baby checkups and physicals. But something is amiss.

During the same time frame, the percentage of the population with diabetes has increased from 5.53 to 23.35. Deaths from heart disease began to show subtle signs of increasing in the 1980s after 20 years of decline. (Rates have not decreased since 2011 and actually increased in 2016.) The number of people with asthma has increased in the US from approximately 6.8 million people in 1980 to 24.6 million. Some studies show that autoimmune disorders like celiac disease, type 1 diabetes, rheumatoid arthritis, systemic lupus erythematosus, and inflammatory bowel disease have also risen dramatically.

Not only that, prescriptions for medication have increased. According to the Centers for Disease Control, in 2015, approximately 269 million antibiotic prescriptions were dispensed from outpatient pharmacies in the United States. That is enough for five out of every six people to have received one antibiotic prescription that year. The CDC estimates that 30% of those prescriptions were unnecessary.

Since 2005, opioids have been prescribed for pain at a rate as high as 80 per 100 people and as low as 66.5 per 100 people across the US. In my particular state, opioids were prescribed at a rate of 114.6 prescriptions per 100 people in 2017. Yes, that’s more prescriptions than residents (of any age) in the state. Since I’m pretty sure most infants and small children weren’t receiving them, quite a few people must have been doubling up.

ADHD diagnoses and resulting prescriptions reached as high as an average of 11% of children across the US in 2012, then settled at a rate of about 9.4%. My state well exceeds the national average in this area. We diagnosed as many as 14% of children as having ADHD in recent years while Nevada was finding only 4% of children had the condition.

We also medicate for “pre” conditions like pre-diabetes, pre-stroke, pre-cardiovascular disease, and pre-breast cancer. The medications for these preconditions are not vaccines that prevent disease. They are meds that may reduce the risk of disease progression. They’re actually reducing disease progression that may not occur even without the medication.

In contrast, the new patient questionnaire when I changed primary care physicians last year only asked about medical conditions (celiac disease was not included). It did not explore my nutritional, exercise, or sleep habits nor did the nurse or doctor inquire. When I visited my county health department last month for a tetanus booster, there was no attempt to collect data regarding these habits.
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But the starkest contrast I’ve experienced between healthcare rhetoric regarding self-care and actual experience with the healthcare system in recent months has been in hospital dining services. With the birth and subsequent 60-day hospitalization of my granddaughter, I’ve had the opportunity to experience dining at multiple hospitals in my city. One offered room service style dining for patients and another will offer it soon. The pediatric hospital did not deliver meals for parents, but included a cafeteria meal each day in the price of the room.

While I have many concerns regarding hospital dining, one could easily be addressed — information. Noting each food on the menu, in a steam table, or on a shelf that contains one of the 8 most common allergens would be a great start. In Ireland, 14 allergens and their derivatives must be noted on all restaurant menus, prepackaged food, food purchased online, food from supermarkets, delicatessens, bakeries, and farmers’ markets. Having that information automatically available is customer friendly and will save the staff time.

This small beginning could eventually be expanded to a full listing of ingredients, nutritional summary, and calorie counts for all menu items. Room service menus contain a limited number of items making it entirely possible to research this without undue burden. Hopefully, someone is reviewing this information prior to choosing a food for menu inclusion, but I won’t make that assumption. If that’s the case, it’s just a matter of importing data as the menu is developed then passing that data to the graphic designer. Easy peasy.

A focus on offering a wider variety of fresh food prepared in-house instead of packaged and processed food would signal that good nutrition is truly valued as a foundation of good health. Having a salad bar is great, but it would be refreshing to see a Buddha Bowl filled with greens and other assorted fresh vegetables, quinoa, brown rice, chickpeas, and baked sweet potato chunks drizzled with lemon, garlic and tahini sauce or tacos (or rice bowls) filled with sautéed baby portobello, shiitake, and oyster mushrooms, red and green bell peppers, onions, and goat cheese or gazpacho full of fresh tomatoes and other vegetables served alongside a turkey and avocado sandwich.
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Fresh vegetables may be more costly, but they also offer an opportunity for a Patient and Family Centered Care educational experience. Imagine how intimidating it is as a patient to constantly receive admonitions to change your diet if you don’t know kale from spinach from chard or have never eaten a Brussels sprout. If you really don’t know what foods to choose in the store, can’t afford to waste money on food you may not like, and have never prepared fresh food, these admonitions may be lost on you.
If some produce was grown on site in containers, rooftop gardens, or in courtyards, it could be used to teach patients and families about better nutrition and healthy food preparation. Onsite gardens can be incorporated into occupational therapy as well. Is that as easy as clicking a box to order prepackaged food? Of course not, but that doesn’t mean the idea should be summarily dismissed.

But the hospital menus I’ve seen are far, far, far from fresh food. I can’t think of a single reason that Fruit Loops should ever be included on a hospital menu and yet, last week as I perused one there they were listed under breakfast. The number one ingredient in Fruit Loops is sugar. SUGAR!?! Don’t we call those empty calories?

It’s hard to accept eating advice from a healthcare system that presents Fruit Loops as an option. For me, it’s mind-boggling. We are preaching to people to lose weight and not feed their kids added sugar while the hospital that treats their diabetes offers sugary cereal for breakfast. At best, it’s hard to take seriously nutritional information that is dispensed from such a hospital. Maybe that’s why some patients ignore the healthy eating information they receive.

Before we leave the subject of sugar…How about stocking the hospital deli yogurt station with plain yogurt and fresh fruit? If a patient thinks they have to have sugar with their yogurt, make them add it. Having to use extra effort just might get their attention. Don’t offer sweet tea. Again, having to add sugar is a chance to think about the fact that sweet tea is filled with added sugar. Not offering sweet tea shows no tacit approval that might be confusing to patients. Don’t offer soft drinks through room service. If a patient wants one, someone will have to take a walk to a vending machine or dining facility (Ah, we just added exercise for someone). Tiny disruptors may create some grumbling and discomfort, but they also interrupt habits and that can be a great opening for change.

steam trayI’d prefer larger changes in hospital dining options, but I’m realistic enough to recognize that even small changes can face huge obstacles. That must be true or surely we’d be doing a better job of reconciling the disconnect between healthcare rhetoric regarding diet and the food offered to those using the healthcare system. Surely we can see that we’re making self-care unnecessarily difficult in healthcare dining.

I’ll leave you with a quick story. When I was dating a physician who directs a department at the local medical school, he had a colleague with heart disease. That colleague, also an MD, had a heart attack and was hospitalized in the facility where they both practiced. The doctor’s wife noticed that every meal he received as a patient was loaded with bacon, gravy, another heavy or sugary sauce, or red meat. After a couple of days, she asked if they could bring him something different. Knowing his affiliation with the hospital, dining services was willing to accommodate. They asked what she wanted them to bring. She said, “I don’t know, maybe some fish?”. The next day, lunch arrived with some fish…a can of tuna dumped in the middle of a plate unadorned and unaccompanied.

And that, my friend, tells you a lot about the disconnect patients experience between self-care and healthcare.

https://www.ncbi.nlm.nih.gov/pubmed/9553445

https://www.cdc.gov/diabetes/statistics/slides/long_term_trends.pdf

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http://www.cooking2thrive.com/blog/get-know-breakfast-kids/

http://www.cooking2thrive.com/blog/get-know-breakfast-sandwich/

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http://www.cooking2thrive.com/blog/get-know-food/

Disclosure of Material Connection: I have not received any compensation for writing this post. I have no material connection to the brands, products, or services that I have mentioned. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”