It’s the mantra heard around the medical world: Be your own health care advocate. Doctors, nurses, magazines, even your friends who’ve been through major illnesses or surgeries use it. It’s a phrase that can feel empowering. It can feel, perhaps, a little lonely. It can even feel impossible, especially if you’re facing a recent diagnosis of a serious illness, or a major surgery that you know will change your life.
Our Twin Cities medical community is aware of all of these feelings. They’re experts in helping you wade through the ups and downs, and teaching you to embrace the idea of advocating for your own health. We’ve asked care coordinators to dig into the phrase, to tell us what it really means, and how we can—in our scariest hours—be the health care advocate we need to be for ourselves.
It’s not as hard as it feels.
Arm yourself with a folder and a notebook.
“Keep copies of all your records: imaging reports, pathology reports, business cards of people you talk to, any forms you’ve signed,” says Carol Bergen, RN nurse navigator with Consulting Radiologists Limited. “Have a place in the folder that you can take notes or tuck away reports. Getting yourself mentally and physically organized is helpful.” It’s also important to write down any supplements or medications you take so your doctor is aware at your appointments.
Don’t forget to take notes about your day.
“I am a huge advocate for diaries, logging food, activity, blood sugar, emotions, etc.,” Jennifer Jerde, RN health navigator at Ridgeview Clinics, says. “The more information I can learn about my patients, the more I can help them improve their condition.” While you may think a minor symptom is trivial, telling your nurse about it can alleviate the pain or even change the course of treatment. For instance, Dona Maki, care coordinator for GYN Oncology at the University of Minnesota, says that pinpointing a problem can prompt a change in dose or cycle of certain medications and treatments: “I tell patients to write down if they’ve had nausea—we know exactly when that occurs in their treatment cycle.”
Take someone with you.
Have another person attend all appointments with you so when you’re feeling overwhelmed, someone else is there to take notes or ask questions. “Some patients are left with long-term illness. Having people continuously be present is so important,” says Amy Edwards, director of clinical integration, specialty care, and the Piper Cancer Institute for Allina Health. “It’s important for someone to be able to provide frank and honest information with and on behalf of the patients.” Letting physicians know about any changes is key to getting proper treatment during a medical crisis, and having another person at the appointments ensures your best care, especially if your health or your treatment is debilitating.
Make a goal.
Remember what is important to your happiness, and make a plan with your care team to make it happen. “Let your care team know what’s important so they can figure out a plan to get you closer to doing the things that matter most in your life versus just choosing your meds,” says Edwards. Looking forward to what makes you happy will help you on the road to recovery.
Have annual exams.
Annual exams and screenings are wonderful preventative care—they’re used to measure what’s normal for you and what isn’t so you can monitor changes. “The first line of defense is prevention—be up to date on all of your preventative care. Check the U.S. Preventative Services Task Force to see the guidelines for your age,” says Jeanine Rosner, director of clinical projects for primary care at Park Nicollet Health Services. Echoing the sentiment, Jean Pupkes, an oncology clinical nurse specialist at North Memorial Health Care, adds, “Seeing your doctor annually to get your cholesterol checked, female examinations, colonoscopies, and other blood work is really great. If you are or have ever been a heavy smoker, get a chest CT at age 55 to look for anything irregular.”
Make a care plan.
Having a plan in place for your care if you are unable to make decisions, such as in an accident or as you undergo treatment, is a crucial step in taking control of your health. Arming yourself with information and keeping track of your progress will help you feel empowered. How do you know when you’re on the right track? “When you start answering your own questions, you start to feel you’re back in control again,” says Bergen. And feeling empowered is what being your own health care advocate is about.
Reduce your stress.
No matter your condition, reducing stress allows your body to relax and focus on healing. Bergen says, “Reduce stressful situations and eliminate things that cause stress. Establish connections with people or reinforce your relationships with people who are important to you.” Get out and take a walk with a friend, or if your energy is low, find ways to socialize at home. Keeping your social skills sharp and learning new things will motivate you to get and stay healthy. Having your network with you will feed your soul.
Accepting your condition and that you may need help is part of the healing process. “Some women don’t have a good support system, so we find support within the community and get them involved, but some women find [their diagnosis and treatment] so overwhelming that they don’t process the whole thing until they’re done with treatment,” says Maki. “There are resources for people who have difficulty preparing meals, and there are people who come in to clean houses so patients don’t have to worry about any of that. We have to teach patients it’s OK to put yourself first. Take that afternoon nap if you need it.”
The Care Coordinator
Consider care coordinators and nurse navigators the project managers of your health care, helping you to help yourself through it all.
Care coordinators, sometimes called nurse navigators, help you be your own strongest health ally when you go home.
Though the functions have been around for decades, the titles of nurse navigator and care coordinator are relatively new, and the duties are different than that of a traditional nurse. “Care coordinators partner with the patient as more of a long-term relationship,” says Amy Edwards, director of clinical integration, specialty care, and the Piper Cancer Institute for Allina Health.
Nurse navigators/care coordinators answer questions after treatment, during therapy, or while taking medications. When treatment is complex or chronic, care coordinators are especially helpful. They keep close tabs on appointments, and communicate vital information about your health to physicians and specialists. “Having nurses more involved on the clinical side and being the point person for the bigger picture of the patient has been helpful in decreasing the fragmentation of care,” says Jeanine Rosner, director of clinical projects for primary care at Park Nicollet Health Services.
Care coordinators also act as translators, conveying information about your condition to you from a variety of health care providers. They can help find balance between what a physician recommends and what the patient wants. “Nurses are very strong in education about prevention and self-management,” says Rosner. Mary Haugen, director of nursing, ambulatory surgery center, and the pain program at TRIA Orthopaedic Center, says, “Nurses work to create a holistic plan of care—looking at the whole person and not the illness.”
Coordinating care can ease anxiety and stress, especially if you have a health emergency out of state, or a complicated insurance situation. Jean Pupkes, an oncology clinical nurse specialist at North Memorial Health Care, remembers a patient visiting Minnesota who was diagnosed with cancer. “I spoke to the patient, her oncologist, and went in with a book about ovarian cancer and all the paperwork about the treatments,” Pupkes says. Her job also required additional research. “I talked to different resources like the Minnesota Ovarian Cancer Alliance about financial resources because her insurance was out of state and we were having difficulty.”
In essence, it’s what nursing is all about—giving care, however the patient needs it. “The most rewarding part of being a nurse navigator is seeing a patient transition in front of you on their own terms, their own way, on their own path. To see someone fully activated and engaged in their own health and/or chronic illness makes me believe we are doing the right thing,” says Jennifer Jerde, RN health navigator at Ridgeview Clinics. “The trust that is developed in the relationship between a patient and an RN health navigator is very powerful.”
How to Care for Someone Else
Be supportive. Show love in a way you know your partner appreciates. “The husband of one of my patients told me, ‘I don’t know what to say to my wife because it’s not me whose role is changing or me that has to go through surgery, but I do know she likes to have her hair brushed,’” says Carol Bergen, RN nurse navigator with Consulting Radiologists Limited. “He said, ‘In the evenings when the kids are in bed, I ask her to come over to me. She sits on the floor and I brush her hair, and she reaches her hand up and we hold hands for a minute. And that says it all.’ It’s his way of showing support to his wife.”
Be present at appointments. Your presence will show your support and solidify your relationship with the care team so you can be a voice for your loved one. It helps if you and your loved one can be clear with the care team about who is responsible for communication. “Make sure the care team understands who the point person is. Many patients have conditions that aren’t always visible, like dementia, so knowing who we should call is important if it is not the patient,” says Jeanine Rosner, director of clinical projects for primary care at Park Nicollet Health Services.
Take care of yourself. You can’t be a good caregiver to someone else if you’re exhausted or unhealthy. “Caregivers have to take care of themselves too, and know when to ask for help,” Jennifer Jerde, RN health navigator at Ridgeview Clinics, says. Don’t be afraid to ask friends or family to cook a meal or pick up the kids from school. Nurse navigators can also be great resources for caregivers who need advice finding help.