We recently had the chance to speak with patient advocate Jan Manarite about how she approaches her role as educator and facilitator. The wife of a patient, Jan and her husband Dominic began their prostate cancer journey in March 2000 when he was diagnosed with a PSA of 7,096 with bone metastases to the hips, ribs, spine and skull. Today, Jan is one of three patient advocates who staff the widely popular PCRI Helpline http://prostate-cancer.org/resources/helpline/. If you’d like to reach Jan, you can do so by calling her at her home office in Sanibel, Florida at (239) 395-0995 or by emailing her at email@example.com. Keep in mind that neither Jan nor the other PCRI Helpline support staff take urgent or emergency calls. If you’re in an urgent situation, you need to call your doctor.
I listen first. Because if I listen first, I’ll hear what their fears are. More often than not, I find fear is based on misinformation. “I had a friend with cancer and this happened to them,” the caller will say.
So I listen to the situation. I try to meet them where they’re at. As advocates, we help you understand your journey, clarify your situation, find your next step, get better information, find resources that you didn’t know about, and get you to a place where you feel empowered. I know someone is not feeling empowered if they say they feel helpless, overwhelmed, afraid, or anxious. That’s the checklist. If I can start checking those off, I can take people to a place where they feel empowered. That’s my goal.
Everyone has fear going into a cancer diagnosis. Often that is based on misinformation. Yesterday, for example, I was speaking with a gentleman who was asking question after question. He seemed to be all over the place. And he actually sounded like he was doing really well. Eventually, what I heard was a fear of something. I didn’t know what it was, but I really thought it was a fear of dying, which is something you have to face in this journey. You have to go there. And you’ll come back a better advocate or a better person. I recently wrote an article called “Understanding Survival Statistics” about facing death in your prostate cancer journey. I gave him the article and said, “See if that helps.”
I always tell prostate cancer patients to get their medical records. You have your own personal science and it’s in your medical records. The more you understand your medical records, the more you’re going to be able to develop better questions. And if you develop better questions, you will get better answers.
But there are actually multiple benefits to getting your medical records. When you go for a second opinion or go to see another doctor, bring your medical records, because you have no idea if the facts made it there before you did. Just eliminate confusion and bring your records. Personally hand them to the doctor.
Another reason to have your medical records is that your adult children at some point will need to decide what they should screen for based on their family history. Accurate medical records will help them do that.
Luckily, it’s now becoming politically correct to ask for your records. Medical records are also increasingly available online through EMR, or electronic medical record, systems. The change is part of patient-centric health care and shared decision-making. The benefit for patients is that it is now politically correct to ask for your records, which makes it less of a battle or a conflict and much easier to do.
Keep your own records and then every time you see someone ask for a copy of what happened that day. The best time to ask for your medical records is when you’re in your doctor’s office. Because your doctor is the only one who has the legal power to give it to you. And you are the only one who has the legal power to ask for it. A new CT scan? A new blood result? I think sometimes there’s a tendency for patients to rely on the doctor who ordered the imaging test to interpret it. If an urologist orders a bone scan, you rely on the urologist to interpret the result for you. But the truth is, there’s another doctor who reads your bone scan, not the urologist. He is called a radiologist. And he produced a dictated written report for your urologist . So get a copy of the result and take it home. Your cancer is too important to try to make decisions based on verbal information and mental recall. You wouldn’t do that for financial decisions, would you? Why for medical decisions?
Words were intended to communicate. At the very least, they should be communicating to the people who need the information the most. They should be serving them. But there’s a big valley between scientific vocabulary and the sick person. My job is to create a bridge over that valley. I talk a lot about the fact that every drug has two names. And science definitely keeps changing words. Hormone refractory became androgen dependent became castrate resistant. Watch and Wait become Medical Management became Active Surveillance. A large part of what I try to do is build a bridge between the science and the people who need the science wherever I can.
The other thing I say this to people about their medical records is that you can google any one term in your records that you don’t understand and you’ll be surprised at what you can learn. You’ll be surprised how much clarity you can get when you’re no longer intimidated by a term.