Patient advocacy is one of the most important topics people of color ought to be discussing in this ever-changing, messy healthcare climate. For many black Americans like myself, medical mistrust has created an environment where we are fearful about both seeking and sharing information about our medical issues. There can also be situations where a major disconnect happens between a doctor and patient who either doesn't have the tools to express what they need, or are simply not being heard. The ability to advocate on another’s behalf—or for yourself for that matter—in a doctor's office or waiting room isn’t just an exercise in gaining understanding. It could mean the difference between life and death.
Leo Moore, a physician and clinical prevention specialist in Los Angeles, works to help others gain better understanding of the importance of patient advocacy. “Both aging and ailment can be very stressful times in which patients may be unable to make the best decisions for themselves,” he tells me. “Many concerns may cloud their minds, affecting their judgment and ability to advocate for themselves.” The patient advocate can act as a trusted advisor, he says, playing an integral role when the patient has difficulty understanding medical bills, medication side effects or plans for surgery, among a host of other things.
In Moore’s own practice, he sees the benefits of his patients bringing an advocate—a friend, family member or even trusted colleague—with them. If they’re not available to attend the visit, the patient will sometimes call their advocate, so they can hear the information, ask questions, and help the patient decide on next steps. This type of support can be critical to helping a patient achieve optimal well-being, he tells me.
I know this firsthand because I was recently a patient advocate for my grandmother. Following her first radiation appointment after brain surgery, her nurse and doctor wanted to consult. She was nervous about potentially forgetting what they'd share and asked for me to be present during the conversation. We both got some clarity and it ended up being really helpful for her healing and our family’s peace of mind.
Below, I along with some black physicians shed some light on how to be an effective patient advocate for someone you care about. Our hope is, with a little more awareness and communication, we can shift the power structure in a medical system that’s left black Americans out of important conversations for centuries.
What does it take to advocate for someone who’s not well?
My family—my brother, my two aunts, my mom, and my dad—have a team approach to each member’s health. This way, we all stay in the loop on what the care will look like for a person when they're dealing with medical issues.
If one of us is the person being the advocate during challenging times—the one who speaks with the doctor about treatment options—we have a text chat group that we report everything back on. Sometimes, being a patient advocate will require the responsibility to be shared rather than placed on one family member. I find that this creates an atmosphere where our loved one feels more supported and like less of a burden on one person.
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If you've got a squad, great. If it's just you, the following is even more crucial: There are strong communication skills and a lot of patience that sometimes go into this work.
“An advocate can facilitate a discussion and ensure that all the predetermined questions are answered. The patient can then just focus on listening to the responses,” says Shairi Turner, a New York-based physician with a focus on trauma-informed medicine, and chief medical officer at the Crisis Text Line. “The advocate should also be a note-taker and discuss everything with the patient again after the visit. This is especially important with topics such as cancer, when the shock of the diagnosis can prevent patients from retaining much information."
How do I know when a person needs me as an advocate?
There’s a racist and ignorant theory still circulating out there that black people have a higher threshold for pain. While that theory's caused an unfathomable amount of under-treatment, it sits alongside a reality that many of us do not tell others when we are in pain—and that mistrust in healthcare that I mentioned before. People in my community sometimes “tough it out” until a condition becomes an emergency, with many of us not knowing how to ask for help without seeming weak.
About 12 years ago, my father was lying in his bed with chest pains, struggling to breathe. He’s always hated the doctor, and has historically only gone if things get dire. Thankfully, my little brother was home from college, and checked on my father, who could barely speak except for to say he was "fine." My brother looked at him and said, "Either I'm taking you myself or I'm calling the rescue squad, but you are going to the hospital." My father ended up going, and being diagnosed with congestive heart failure. That trip saved his life.
"History and continuing health and treatment disparities have created a distrust between people of color and physicians—especially those of a different race,” Turner tells me. “This and access to care issues—lack of insurance or being under-insured—promotes the delay of care and the use of the emergency department for issues which otherwise might have been prevented. Subsequently when these patients finally do receive care it does seem like there are a plethora of issues to address."
My family members always say things along the lines of I hate going to the doctor because they always find something wrong, so they don't go. But even when they do, the situation can be so stressful that decision-making is nearly impossible. “Often under extreme stress or in crisis situations, people make emotion-based decisions, which may not be beneficial to the patient or to the family,” says Nathaniel Currie, a California-based psychologist who focuses on communities of color and LGBTQ communities. “Have a plan in place ahead of time and a point of contact/decision maker so outcomes aren’t altered by poor decision-making.”
What else can I do to advocate for a family member?
When a serious illness strikes, the family has to choose who has the power of attorney. After my grandmother’s brain surgery about three weeks ago, I was that person, which meant I had to meet with the doctors and discuss treatment and ensure things on her behalf. My family—and many other black families like mine, I can promise you—don’t tend to discuss matters like this or have a plan in place, and it's extremely important.
“Being a patient advocate requires encouraging your family member to write advance directives while their mental state is intact,” Moore says. “Advance directives,” are legal documents, such as a living will, that allow a person to record their wishes regarding end-of-life care ahead of time. They address questions such as if they would like to be resuscitated in an emergency and choose the person who would make decisions on their behalf in the event they are no longer able to make decisions for themselves, Moore tells me. These are not easy conversations or decisions to make, but they're absolutely necessary. Moore encourages his patients to think about the advance directives as a way to ensure they or their loved ones die with dignity.
How can I advocate for myself when I feel like I’m not getting the care I deserve?
I think we often forget sometimes that we're a patient and not just a number or medical chart. Anytime you’re visiting the doctor, make a note in your phone beforehand with any questions you might have to ensure you don’t forget something important. A doctor is there for you, and you should never leave the office feeling confused.
There have been plenty of times I have needed to advocate for myself in situations. I was taking an HIV medication that had terrible side effects. Unfortunately, for three whole years I thought this was just something I would need to accept. I finally told my doctor and she switched my medication. Just like that. She then told me to never be silent when it comes to my own care. I am always vocal now in my own health, with the hopes that more of us will be too.
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