Why you need a medical sherpa (and how to find one)
This is the third in a series of articles that focuses on your rights as a patient—both inside the hospital and out. We've already explored the Patient’s Bill of Rights and informed consent. Today, we're tackling patient advocacy—what it is, why it’s important, and how to get it.
By now, we’ve all heard that there’s a crisis in American health care. This year, an estimated 21 million people are expected to be enrolled in health insurance plans, thanks to the Affordable Care Act (that’s the good news).
But with the increasing number of patients seeking care come a number of other challenges: doctors are overwhelmed, resources are strained, and in the middle of it are people like you who need care, want answers and support, and trust doctors to provide them all.
Wouldn’t it be helpful for health care providers to have an extra set of hands? Or at the least, people to stand in the gap to help you access what you need?
That’s what Rob Lamberts, an internal medicine-pediatrics physician, would like to see in the nation’s hospitals. He wrote about it during his father’s recent hospital stay on a recent blog post. He writes, "People are quick to accept non-answers from specialists, to be misconstrued by ER doctors, and to spend a week in the hospital without knowing what is going on. Other doctors are far too willing to accept fragmented care, not knowing the context of the current hospitalization or outpatient consultation."
His solution? "Medical sherpas"—people who will hold your hand, support you, be your champion, and guide you through the complicated, cumbersome, and often-frightening matrix of health care providers, insurance companies, and treatment plans.
What Lamberts is describing, in essence, is a patient advocate.
What’s a patient advocate?
It’s someone who acts as a liaison between you—the patient—and your health care providers. They support and promote your rights and help you navigate the health care system. This includes everything from making sure you get the right tests and medications, to working with insurance companies to resolve bills, and more.
Who needs a patient advocate?
"Every patient who cannot speak for him or herself needs a patient advocate will who be their voice," says Lorrie Klemons, a patient advocate and wellness nurse in North Carolina. Klemons co-founded Patient Action, an organization that’s dedicated to patient advocacy and empowerment.
She says the times you might not be able to speak for yourself might include when you’re under anesthesia during a procedure or surgery; sedated; comatose; unconscious; or confused or anxious (to name just a few).
And because the advocate is your "voice," Klemons says they must be good communicators. That means they should be ready to take notes and share their questions and concerns with the rest of health care team. “The key is for the advocate to collect the necessary information relevant to the case in order to make informed decisions related to the patient’s care,” she says.
It’s also important to note that the advocate should present themselves as a member of your health care team, not an adversary.
But if you’ve ever been in the hospital and felt you weren’t being heard or that you were overlooked, it can be hard to not feel adversarial. Klemons says a good patient advocate knows how to express concerns without appearing, well … frustrated. The key is to be respectful and kind, and to treat others with dignity.
"They must share their own objective observations with the health care team and ask for clarification or validation of their observations," Klemons says. "[They might say something like] Doctor, help me feel comfortable. What’s going on with my loved one? Why isn’t he getting better? Why isn’t she responding to the treatment? Why does he still have a fever? What do the lab reports indicate? Let’s call in a second opinion for my own well-being! My gut tells me that something is not right."
So... how do I get a patient advocate?
Most hospitals have patient advocate departments, and you can access their services free of charge. Generally, they handle complaints you might have about your care or treatment.
Several non-profit groups also offer patient advocate services. The Washington, D.C.-based Patient Advocate Foundation is one such group.
A quick Google search will also provide you with contact information for both for-profit and independent patient advocates in your area.
Many times, a relative or caregiver serves as your patient advocate. The only criteria is that they have your best interests at heart and are willing to support you and help you navigate the health care maze.
But while an outside person can serve this role, oftentimes, you’re your own best advocate. In the next article in this series, you’ll meet a cancer survivor who learned to advocate for herself—and will show you how to do the same.
Up next in our series of articles on patients’ rights: learning how to your own best advocate in your health care.
A version of this post was published on Forbes.