Long before she became a medical student, Emma Elder, '24 BSc (Hons), learned some tough lessons about the health-care system. When Elder was 17, her mother, an otherwise healthy 52-year-old, was diagnosed with a serious heart condition. Despite her young age, Elder became a supporter and advocate for her mom. It wasn't easy.
Elder remembers her panic when — with her mother in pain on the examining table — the cardiologist announced her mother's chest pain was due to pericarditis, or inflammation of the heart's surrounding sac. Elder recalls being overwhelmed with questions: "Oh my gosh, what is pericarditis? That sounds really serious. Is it curable? How do you treat this?"
Despite the cardiologist's explanation, Elder says she went home scared and uncertain. "My mom is one of the toughest humans I have ever met," she says. "But the pain washed away pretty much all of her strength to advocate for herself and ask those important questions." Elder realized she had to take charge.
Her experience led her to study cardiovascular physiology at the U of A. Today, Elder — now a first-year medical student at the University of Calgary — helps Alberta patients and their families navigate the health-care system as chair of the independent non-profit, Open Arms Patient Advocacy Society.
Chances are you or a family member will also encounter challenges while seeking medical treatment. Here are four ways you can better advocate for a patient in your life.
1: Don't be afraid to ask for support
When Elder was navigating health care on behalf of her mother, she hadn't heard of Open Arms Patient Advocacy, though the group had been around since 2007. Only later did she learn that free support was available. Trained volunteers help patients with issues such as accessing information and documentation, connecting with resources and even filing complaints about medical care. They may also attend key appointments with clients. "When you're sick and hurting, it's so difficult to advocate for yourself," Elder says.
If you're hesitant to reach out to Open Arms, there are other steps you can take. Elder recommends having a friend or relative accompany you. A trusted ally can take notes, ask questions and make sure you're getting the information you need, she says. She adds that emotional support can also ease anxiety.
2: Communicate as clearly as possible
If you're unclear about something, keep asking questions to seek clarification, Elder advises. Consider asking about: treatment approaches, the purpose of specific tests and medications, side effects, next steps and short- and long-term outcomes.
"At Open Arms, the number one issue we see is miscommunication between a health-care provider and a patient," she says. For Elder, it came as a surprise when her mother's pericarditis returned, months after her initial recovery. "It wasn't really explained well to us that she could have flare-ups at any time."
But good communication is a two-way responsibility. Elder says patients also need to be clear about their health goals and boundaries — for example, can you tolerate a more invasive procedure? Are you able to do physiotherapy?
3: Be cautious when you research
Stay informed, but keep in mind information found online is generic. Treatment plans can vary depending on individual factors, Elder points out.
When her mother became ill, Elder, who had already developed an interest in physiology, began Googling her mother's condition. But after reviewing studies and drug trials as a U of A science student, she realized how superficial her knowledge had been. "I think many of us are guilty of WebMD-ing our results and coming to our own conclusions," she says.
When it comes to your personal health information, such as test results, keep up to date, but know when to consult your health-care provider. While having access to your own medical records, via digital platforms, is empowering, Elder says test results without appropriate interpretation can cause anxiety.
4: Take time to consider your options
Don't feel pressured to immediately accept a treatment plan, Elder advises.
Instead, if you're uncertain, ask about other options. She acknowledges patients may feel intimidated, especially when dealing with a specialist they're seeing for the first time. So take time to reflect on what you've heard, or talk to your family doctor. Ask for a referral for a second opinion, if you're not satisfied — something Open Arms Advocacy can help with.
"A good health-care provider will understand that it's OK to have that second opinion," Elder says. "Unless you're in the emergency room and it's a life-or-death scenario, you have the time to think about things."
