When the Phoenix Society for Burn Survivors was founded, no long-term support existed for those impacted by burn injuries. Our founder saw a need and addressed it the best way he knew how: from his own personal experience as a burn survivor.
Phoenix Society has been driven by the survivor community ever since, but it wasn’t until we began to collaborate with the medical community that standards of care improved nationwide.
It all starts with professionals and patients working hand-in-hand. By advocating for patients and empowering them to advocate for themselves, we can create better outcomes and better standards of care.
When you advocate for a patient, ask yourself these three questions:
Who is the expert?
We are armed with years of medical education and practical experience, so we have a huge breadth and depth of knowledge about patients’ conditions. We want the best possible outcomes, and we believe we know how to get there.
You may be the expert on burn care, but the patient is the expert on their own body and mind.
When we assume we know what someone needs, we may unwittingly find ourselves a roadblock in their recovery. Take the time to understand what each person wants from their recovery, because it may not always match your idea of a good outcome.
That doesn’t mean the patient will always be right, but it does mean we need to check our assumptions at the door, make space for their individual needs, and listen carefully to what patients are telling us.
Are you enabling or empowering?
Our instinct is to protect patients, and sometimes it’s hard to know when we’ve gone too far. As a one-time patient and a former nurse, I’ve seen a lot of health care providers unintentionally cross the line and treat patients with paternalism.
What is paternalism? It’s when someone in a position of power restricts an individual’s freedom or responsibility, usually with the justification it’s in the individual’s “best interests.”
When we’re being paternalistic, we often don’t realize we’re taking away someone’s autonomy, and when other imbalances of power come into play — like race, class, or gender — we need to be extra aware of our desire to shield and protect.
Offer support and guidance, then step back and let the patient take the lead. Rather than making decisions for the patient, arm them with the knowledge and tools to make informed decisions that are right for them.
How can I bridge the gap?
When I was released from the hospital, I called my burn unit every night for two weeks — just to chat. I had forgotten how to exist outside that supportive cocoon. My story isn’t unique. So many people leave the hospital and find themselves struggling and alone.
You can offer a safety net.
What does aftercare look like at your hospital? One of the best ways to advocate for current and future patients is to push for long-term recovery resources. Whatever you do, don’t underestimate the impact of the transition home.
Familiarize yourself with the nonprofits in your field. Pay attention to those led by people living with the patient’s condition. At Phoenix Society, half our board has survived a burn injury. You can bet that influences how we serve our community.
Before releasing patients, connect them with groups like Phoenix Society for Burn Survivors that offer resources and programs to support long-term recovery. We are designed to pick up where health care leaves off.
As a patient advocate, you are a vital ally to people in their most vulnerable moments. We can learn so much by listening to patients’ experiences and ideas for better treatment. I’ve seen firsthand the innovation that occurs when patients and survivors have a seat at the table.