Becoming an Active Patient During Kidney Cancer Treatment - Episode 4
As a part of its Speaking Out video series, on behalf of KidneyCAN, CURE® spoke with Meryl Uranga about the importance of patients being their own advocate when communicating with their physician.
Kristie L. Kahl: Why is it so important for patients to be their own best advocate, especially when it comes to their care?
Meryl Uranga: It's a topic that I'm very passionate (about) and have a very personal connection with. The caretakers and patients that are going to be coming in on your behalf are one of many, many patients that your doctors are going to see, that your clinicians are working with. So, you really have to take responsibility for your care, your decisions, and most of all the empowerment of knowing what's going on with your case. And instead of being someone who's taking direction, you want to be in a mindset of working as a team with your clinicians. And it makes all the world of difference in terms of how your care will go going forward.
Kahl: How can patients make sure they’re effectively communicating with their physicians? Especially when it comes to their preference on treatment, quality of life and side effects.
Uranga: I think like in any situation that you have to set expectations at the beginning of the relationship. You need to first of all choose a clinician that is going to work with you and do the things that you're looking for and be able to communicate the way that you want to. You want to set the expectation that I want to be an active participant, I want to know what's going on, I want to communicate, I want to be involved in decision making.
If you have a caretaker that you want to be involved you need to communicate that because there are, like in any profession, certain areas they're not going to be a good fit. You're going to meet doctors and I went through a few before I found mine because we weren't on the same page. So, you have to make sure that those expectations are set, and they know what kind of patient you are. There are a lot of people that are very comfortable just taking direction from authority figures like a doctor, (but) if you want to be in that empowerment mindset and you want to be a partner, you have to make sure that they want that as well. I really recommend finding that right fit in terms of experience, in terms of specialty areas and in terms of the communication style that they're willing to provide and work with you on.
Kahl: How can a caregiver or a patient’s loved one also be a part of this patient physician communication?
Uranga: I think part of it is kind of one of the parts of the same concept of bring them with you, introduce them, let them know that you want them there, that you want them to have the information that you have, that they will be working with you on decision making. They may be taking notes. There's a lot of times where, unfortunately we get not the greatest news and it can be jarring so you want to have somebody there with you. And again, as long as you're all on the same page there'll be a tremendous working experience and relationship. But the thing that I would stress is to make sure that is something that they allow, for whatever reason they may not do that in their practice. So, you have to get that set up — those expectations set and agreed to upfront.
Kahl: Looking back on your own experience, what would you say is your biggest piece of advice for others when it comes to patient physician communication?
Uranga: My biggest piece of advice is born from my own experience. When I was diagnosed, I was in a fog. I am normally a very proactive, research-oriented person. But when you get this kind of news, it's very difficult to pick yourself up and get in that mindset right away. And so you kind of go through the motions. So my only regret I guess you would say and what advice I give to someone newly diagnosed is: don't make too many decisions until you can kind of get your feet under you because I personally made some decisions looking back that I would not have done six months later when I got more educated and more involved in learning about what was going on.
So, take a breath, whatever is going on with you, it has been going on for some time. Especially with kidney cancer because almost everyone I know, and there's a lot of people that I know that have been diagnosed with this disease, has said that their physicians have said that they've had it for many, many years it’s a very silent, quiet growing (disease) for a while with no symptoms, no signs. So, you got a few more weeks ,so chill. A lot people just panic, like “get this thing out of me” or “start my treatment” but become educated. It's hard because you've got that emotional jarring, just your world’s upside down and so you have to kind of take a breath and get some land legs and then start understanding what the next best steps are.
And if I had to do it all over again, which obviously I can't, that's what I would have done. What I was doing was just taking direction and advice from the people that haphazardly diagnosed me. In my case, I think it worked out okay, but within six months and recovering from major surgeries, two of them, I was able to really understand where I needed to be for care and make those changes. Had I’d done that pre surgery, I have no way of knowing if it would have been a better outcome, a different outcome. I have no way of knowing but I highly encourage people to take that time. And we'll probably get to that at some point, but how to find out where to go and how to find out who to see and what you're looking for.
Transcription edited for clarity.