Be an active part of your own healthcare
We’ve all become accustomed to the idea that healthcare is changing. New surgical techniques. Changes in the way we pay for care. The disappearance of the all-knowing, fatherly family doctor.
But one change feels as if it’s snuck up on us: being a patient seems to have grown more complicated.
“Advances in medicine, technology, and healthcare services promise increases in the length and quality of life for many Americans,” a 2010 report from the Center for Advancing Health says. “However, obtaining the benefit of these advances to prevent, manage, and cure disease depends increasingly on individuals’ energy, knowledge, and skills, regardless of whether they are sick or well.” (Emphasis added.)
In other words, the rules have changed in a way that asks more of us—although nobody seems to have gotten a copy of the rulebook.
That’s what we hope to provide with this edition of our annual health guide: some guidelines for being a more effective patient and caregiver in a changing medical landscape.
It’s a lot of responsibility, but you can look at it another way.
“The patient’s empowered,” says Dr. Carol Steltenkamp, a pediatrician and chief medical information officer for UK HealthCare.
The new landscape provides plenty of opportunities to tailor your healthcare to your individuality—your goals and values, your diet, your history.
Steltenkamp agrees heartily with a line from television personality Joan Lunden: “Be the CEO of your own health.”
“CEO” doesn’t mean “sole proprietor”
The single most important factor in a better patient experience is having a primary care professional—a family practice doctor, internist, pediatrician, or nurse practitioner—who you trust, and who knows your medical history and coordinates your treatment.
Dr. John A. Patterson spent 30 years in family practice in Irvine, in Estill County, and now runs Mind Body Studio, an integrative medicine practice in Lexington.
Patterson, who also teaches at UK and U of L, calls having a primary care provider “the first step toward ensuring yourself that your navigation of the system is not going to be done in isolation. It’s going to be done with someone who knows you personally, and ideally is more concerned with you as a person than with the conditions that they’re treating in you.”
Such a practitioner, with a chart on you that goes back years, “sees the breadth of your medical history” and can discern patterns. Patterson says that people with a primary care provider will have fewer unnecessary tests and higher satisfaction than people who “self-refer” to specialists (say, going directly to a cardiologist as soon as your chest hurts).
One of the hot topics in healthcare recently has been what’s called “patient engagement.”
Some of this discussion has had to do with steps the healthcare industry can take to better accommodate patients. But patients have their own role to play.
Patients “have to be participatory,” says Steltenkamp. “They have to be interested.” If you don’t understand why you’re being asked to follow a particular course of treatment, you’re less likely to succeed with it. Engagement with your healthcare should start before you even reach the doctor’s office. Carry a list of all the medications and supplements you’re taking and their dosages, and keep it current. “Don’t just say ‘I’m taking the little blue pill.’ What is the little blue pill?” says Jeremie Hays, a hospitalist at St. Joseph’s Hospital in London.
Some experts suggest going beyond the list of prescriptions to create your own personal health record, preferably an electronic one that can be accessed via the Internet, although the spread of electronic medical records may eventually make this less important.
Be sure to bring a written list of questions to a doctor’s appointment, because it’s easy to forget them in the moment.
Being inquisitive in health settings is essential. “If you don’t know the questions to ask, then the doctor assumes you understand,” Laurie Kelsch of Augusta says in an e-mail.
If you find yourself nervous about asking questions, Play to Win, a presentation from Health Literacy Kentucky, suggests making the very first question you ask the doctor or nurse: “Is it OK to ask questions?”
The key is not only asking questions, but making sure that you understand the answers. “You need to have the courage to say, ‘Here’s what I think you said, doc—is that right?’” says Susan Zepeda, president and CEO of the Foundation for a Healthy Kentucky.
When she was in graduate school, Zepeda worked on a research project, interviewing people as they left the doctor’s office and asking them what their doctor had just told them, and then doubling back to tell the doctors what the patients had said.
“They were going, ‘Oh, my goodness, that’s not what I thought I was saying,’” she recalls.
One aid to improve understanding is to have some way of recalling what was said. That could be a pen and notebook or a recording device. (If you use the latter, please tell your provider before turning it on.) Or it could be another person.
A study by Johns Hopkins University’s Bloomberg School of Public Health in Baltimore showed that patients who brought someone with them were significantly more satisfied with the communication during a doctor’s visit.
Doctors are people, too
Patients may view doctors as a different breed. “I think most people are intimidated by doctors because of their body of knowledge,” says Kelsch.
“We’re not magicians; we can’t see the future,” says Dr. Stephen Houghland, the chief medical officer for Passport Health Plan. “Don’t assume that the caregiver knows exactly what is going on.”
Del Tongret Bloom of Augusta believes that being an inquisitive patient (or advocate for one) improves your relationship with a healthcare provider, making them “more attentive to you.”
Another seemingly obvious lesson is to be truthful with your healthcare providers. If you choose not to follow a prescription, Steltenkamp has a simple but vital request: tell her, so she’ll have a fully accurate picture of what’s going on with you.
Zepeda says it’s important to realize, and act upon the realization, “that space with your healthcare provider is a safe place, and you can talk about really embarrassing stuff—you know, you’re peeing every time you laugh.”
The electronic age is arriving: welcome it
One of the biggest changes in healthcare is the advent of electronic records. As Zepeda puts it, “We no longer have one family doctor who provides all our care throughout life. The electronic record is our new ‘medical home.’ Ideally, this assures that every caregiver who touches your life and body is aware of every other one and all of the health issues you’ve had.”
In other words, if you’re treated by a doctor who isn’t your primary provider, the new doctor will be able to call up your medical record electronically—and, in turn, his work with you will be viewable to your regular doctor.
State health IT
Coordinator Polly Mullins-Bentley runs the Kentucky Health Information Exchange, charged with linking the state’s electronic medical records. She says 90 percent of the state’s hospitals, including all of the state’s large healthcare organizations, have linked to the network, which has signed participants in every county in the state.
Some of these records are accessible through secure patient portals maintained by large healthcare organizations such as Norton, KentuckyOne, and UK HealthCare (password-protected for privacy).
“That is truly empowerment,” pediatrician Steltenkamp says. Patient portals often give patients a convenient way to send electronic messages for non-urgent but important questions.
A patient of Steltenkamp’s was on vacation in Florida and got a rash. Through a picture sent via the patient portal, she was able to make a diagnosis from the picture and her knowledge of the patient’s history, and called in a prescription to a Florida pharmacy near the vacation spot.
Houghland urges patients to understand that electronic records are subject to human error, just like paper ones. The chief advantage of electronic records is they create a better auditing trail that allows quicker analysis when something has gone wrong, he says.
Bring company to the hospital—and join AARP to support new family caregiver bill
Liz Edghill, a member of Health Literacy Kentucky who also works as a refugee health coordinator and educator in Louisville, observes that your health literacy (your ability to understand and communicate basic healthcare information) is challenged when you’re out of your element, in a new environment like a hospital.
Being acutely sick compounds that.
That is why one of the single most important things for a hospital patient, Edghill says, is for a family member or close friend to be there to listen and take notes on decisions and diagnoses.
If they can’t be there the entire time, the patient should sign forms listing family or friends by name so they can call to get information.
The Kentucky branch of AARP is advancing a bill for the next session of the state legislature that will address two crucial elements of a hospital stay: the discharge and the role of the family caregiver.
The bill would require that:
• hospitals record the name of the family caregiver when you’re admitted into a hospital.
• the family caregiver is notified if you’re discharged to another facility or back home.
• the hospital explain and give a live demonstration of any medical tasks the family caregiver will perform at home.
Whether or not that bill is passed, Edghill suggests that you take the initiative: demonstrate for the health professionals any procedures you’re being asked to do and ask if you’re doing them correctly. Do not be afraid to ask questions.
You’re the expert on you
Physicians today are increasingly taught to take a patient’s preferences, values, and background into account, seeing themselves as consultants offering options of care rather than dictating a path.
“We know a lot of science, but we don’t know as intimately the particular circumstances of the individual,” says Dr. Stephen Houghland, the chief medical officer for Passport Health Plan.
Del Tongret Bloom of Augusta recalls her husband being prescribed the blood thinner warfarin (brand names: Coumadin and Jantoven). The drug comes with a warning about eating broccoli and dark green leafy vegetables: the vitamin K they contain can affect your blood’s clotting ability.
Bloom told her husband’s doctor that they ate lots of vegetables and salads. Why make her husband stop eating healthy food that he loved? Instead, why not adjust the dosage to accommodate his diet? She guaranteed they would be eating them consistently from day to day and getting regular blood tests. His doctor agreed. When Bloom told her own doctor about the conversation, he said, “That sounds like a good plan.”
(People on blood thinner should always discuss dosage changes with their doctor before making them).
Houghland observes that a doctor needs to know what’s important to a patient, especially when dealing with chronic diseases and approaching the end of life. One person might want to live as many days as possible, whether or not they’re bed-bound. Another might think, “If I can’t do the things that are important to me, then I’m not sure that treatment makes sense.”
“Being honest, sharing and letting people know what you’re thinking and what’s happening with you—from a medical standpoint, that’s how you exert your individuality,” Houghland says. “Otherwise, you become part of the numbers.”
If you have trouble coming up with questions in advance of a doctor’s visit, there are some online tools to help you.
The federal government’s Agency for Healthcare Research and Quality has a question builder that helps you construct healthcare queries before a visit. Go to www.ahrq.gov.
The agency also has a boilerplate list of 10 questions, such as, “Why do I need this treatment?”, “Will this medicine interact with medicines that I’m already taking?” and “10 Questions You Should Know.”
The National Patient Safety Foundation boils it down further, with a program called “Ask Me 3” that provides a trio of questions worth committing to memory, since they apply in any medical situation:
• What is my main problem?
• What do I need to do?
• Why is it important for me to do this?
In some Kentucky counties, patients can call on professionals to help them navigate the healthcare system and find the resources they need. Click here to read more about community health workers.