When you decide to see a doctor, you have a good idea of what they will do for you. But what if someone suggests you hire a patient advocate? Would you know what that person could do? Or for that matter, how you’d even go about finding one?
If your answer is “no,” you’re not alone. Many people don’t know exactly what an advocate can do for them and therefore, miss the benefits of having an advocate work on their behalf.
During this brief series of posts on health care advocacy, I’ll explain what a health care advocate can and cannot do, how to choose the best one for you, and if the advocate needs to be in-person or can assist you remotely. Let’s get started with what an advocate’s role is and why you might need one.
What Does an Advocate Do?
A patient advocate serves as a bridge – and often an interpreter – between you and the medical professionals providing your care. Receiving a new diagnosis or managing a complex medical issue can be overwhelming and exhausting. You’re trying to understand and absorb what you’re being told by clinicians while also attempting to navigate through a complex healthcare system that seems intent on blocking your every move.
An advocate not only helps to remove those barriers and reduce your stress, but will help you make the best informed decisions for your health care needs based on your goals, beliefs, and personal values.
Specifically, your advocate will go with you to medical appointments to explain diagnoses, treatments, procedures and options; coordinate medical care between members of your medical team by communicating information from your primary care physician to your specialist and vice versa; and help arrange second opinions when requested.
If you’re in the hospital, your advocate can work with case managers on your behalf, communicate directly with the hospital team, and make sure you understand your discharge plan.
Whether your advocate is with you in a doctor’s office or the hospital, she will put her expertise to work on your behalf. If she is a physician or nurse, while she cannot deliver medical care, she will use her knowledge and experience to ask appropriate questions and make sure options and decisions are thoroughly thought through.
What an Advocate Will Not Do
Your advocate is one part of your medical team. While her services can help you with several aspects of your health care needs, there are some things health care advocates will not, and should not, do.
As mentioned above, even if your advocate is a physician, nurse or other type of clinician, she cannot provide hands-on care, meaning she cannot advise you, examine you, diagnose you, or treat you. That said, her clinical expertise will enhance and inform her role as your advocate.
Similarly, your advocate will not render a second opinion. If you want a second opinion, she will arrange one for you, but she will not provide that opinion.
Whatever specific services your advocate is providing, she will not insert her opinion into your decision-making process. She will ask clarifying questions, interpret medical language, and help you make informed decisions. But the decision itself will be entirely yours, based on your goals and beliefs, not hers.
Why You Might Need an Advocate
If you’ve ever been bewildered by what your doctor is saying, you won’t be surprised that at least one study showed that 40 – 80% of information provided by clinicians is forgotten immediately. Almost half of the information that is remembered is remembered incorrectly.
Why is this? There are many reasons: you aren’t familiar with medical terminology, you’re sick and therefore not as alert as usual, you’re scared, or maybe you simply can’t hear what’s being said.
How can an advocate help? She knows what to listen for, understands medical terminology, and isn't hearing the information while also managing the emotions that come with the diagnosis. Emotion is a big factor – whether you or someone you love is the patient. Even with my medical background, when I’ve been the patient at a visit that involves a difficult diagnosis, my understanding and retention of information is impaired.
It’s not just medical terminology that can be confusing; sometimes a patient will misunderstand a doctor’s overall message or the main take-aways from an exam. I once attended an office visit in which the doctor said she knew something was wrong, didn’t yet know the final diagnosis, but wanted to follow the patient a bit longer until something pointed to a clear diagnosis. Once outside the office, the patient told me, “She [the doctor] said nothing is wrong with me. She thinks I’m crazy.” The patient wasn't able to clearly hear or understand what the doctor said.
The bottom line is this: If your doctor’s appointment is likely to be difficult, take someone with you. An advocate brings not only expertise, but confidentiality as well. But if you can’t take an advocate, take a good friend or loved one with you; someone who will be attentive and calm.
If the person can’t be there in person, ask if you can record the appointment or have the someone on the phone to hear what the doctor is saying.
Now that you know what an advocate is and why you might need one, next time I’ll explain how to find an advocate and how to choose the best one for your needs.