There is nothing like a health condition to offer a strong dose of humility.
In the past couple of years, I’ve dealt with a few — melanoma, chronic migraines, debilitating tendonitis, a whole mess of dental troubles caused by missing adult teeth. I’m usually adept at finding answers and giving advice, but, because I’ve been dealing with so many issues at once, I’ve often felt inadequate advocating for myself.
When my late husband was living with brain cancer, I fully realized the value of a third party — someone who is not the patient and not the medical provider — to listen, ask questions, conduct research and help make decisions.
It was my privilege to partner with Steve and his doctors as we navigated dozens of choices, including where to have a biopsy, where to receive treatment, which drug regimens to try, which specialists to consult, which dietary restrictions to follow and which to set aside.
Though I’m surrounded by involved family members and a circle of close friends, I’ve often felt alone during my own recent medical decisions. There is no one person in my life who can go to every doctor’s appointment with me. Gracious, I have trouble fitting in the appointments myself.
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So I’ve cobbled together a sounding board that depends on the time of day I’m leaving an appointment, how much time I have before returning to work and who is caught up on whichever issue I’m dealing with.
My system is not ideal, though I suspect it’s not uncommon. There’s nothing simple about accessing health care, and there are rarely tidy flowcharts that advise on exactly which steps to take.
In the days after my third ankle surgery in two years, this time to reconstruct the tendons that have been so pesky, I’ve sought advice on how to navigate our complex and expensive health care system.
I visited with Jessica Rangel, executive vice president of health systems at the University of North Texas Health Science Center in Fort Worth. She’s also a registered nurse with a strong focus on patient advocacy and patient safety, someone who understands the overwhelming nature of medical care from more than one side and who has served as an advocate for friends and colleagues.
“If you have to start a health care journey, always listen to your gut,” Rangel says. That means asking questions until you understand the answers, she says, and feeling connected with your health care provider — and changing providers if you don’t find that connection.
In addition, she says, it’s helpful to have an advocate at appointments because “Sometimes we don’t hear anything after, ‘You need surgery.’”
The advocate can be a spouse, trusted friend or relative or a professional advocate for hire — someone who will take notes, ask clarifying questions and be available after the appointment as the patient processes the information given.
“They empower the patient and their family to make informed decisions in emotionally charged situations, to ask questions that might be in your blind spot,” Rangel says.
Whether you go into an appointment alone or with an advocate, Rangel advises being prepared with questions in advance. The Institute for Healthcare Improvement encourages three questions for patients and their advocates to ask health care providers:
- What is my main problem?
- What do I need to do?
- Why is it important for me to do this?
If you need more details after those questions, keep asking, especially to cut through medical jargon. “Medical lingo is very different, and we sometimes forget to simplify our language,” Rangel says.
Patients should also feel empowered to ask questions about costs and in-network providers, such as if an anesthesiologist or surgery center is covered under the patient’s insurance.
Rangel, who works daily to help shape a system in which patients are in control of their own care, says, “The bottom line is that if an individual doesn’t feel like their questions are fully answered, keep pushing until you get the answers you need.”
Tyra Damm is a Briefing columnist. She can be reached at firstname.lastname@example.org.