Communicate Better with Your Doctor
I’m the first to admit that I’ve walked out of a doctor’s office and never returned because of tears and frustration. I’m also okay admitting that probably isn’t the best way to handle a disagreement over my health care.
Before you fly off the handle with your doctor, consider these tips from Elizabeth Perkins, MD, Novartis spokesperson, and Alabama-based rheumatologist. The suggestions will hopefully facilitate a better relationship with your health care team.
Communicate by being honest and direct
“I’m a big proponent of being honest and direct with your doctor. It’s always important to stay with your rheumatologist who knows you. Try to work through the obstacles because let’s face it, what’s hard about PsA is the disease, and most of the time, the connection and the communication will also have its ups and downs like the disease has ups and downs,” she said.
Connect with a physician where you can really be open and truthful about your experience with the disease, so you can actually talk about the hardships you experience. This includes trouble with daily activities, medication side effects, fears about the disease, adherence to treatment, and your cognitive ability with fatigue and brain fog.
Patient driven visits
Factors that will alter the timing of the visit include medication changes and needs, the status of the patient, and the model of patient care being used (doctors supervising nurse practitioners and physician assistants versus doctors going in every room). Dr. Perkins said there is no right length of time for visits. “You can have a very effective visit in a short period of time, and you can have a long, drawn-out, ineffective, exhausted visit and feel lost,” she said.
Decision making with psoriatic arthritis
Dr. Perkins cautions that every PsA patient is different and will have different ways of presenting and responding to treatments. It is extremely important that patients make decisions about their disease along with their treatment paths. Use your rheumatologist as your resource. If patients find themselves making decisions about their treatment based on interaction on the internet, in a chat room, on a blog, or off of someone else’s a bad experience, that can be a red flag.
She said, while you can get your education from a lot of sources, you really want to make sure that it is balanced in the context of your disease. Patients need to be sure that they aren’t making big decisions in the wrong context. “I really don’t mind them accessing different resources as long as they can bring them back to the table before they decide on their plan,” she said.
Tips for disagreements
Like any relationship, you are allowed to have a different opinion. When that happens, Dr. Perkins said it is important that the patient not give up. “One of the things I do is make sure they know that I don’t want them to go away because if they go away, there is a good chance their PsA will worsen, could be more difficult to treat and cause damage and deformities long-term,” she said.
“You could be in that camp where, right now, you fear side effects more than the disease. And my hope is that I can get you in the camp where you fear the disease more than the treatments, and we need to find out the treatment that fits you,” she said.
Tips for communication between doctors
In order to facilitate communication between doctors, Dr. Perkins suggests that the patient take the lead.
Here are some suggestions she offers:
- Get written consent to share information. Patient referrals automatically allow information to be shared without signing a separate document
- Ask for labs to be shared and call ahead to make sure they are in your chart
- Confirm that notes from other doctors arrive before your visit
“We want to facilitate and coordinate care with the best of them, but sometimes, we don’t know what we need to facilitate until the patient takes charge,” she said. Even though this is work upfront, she says it will certainly pay off at the end.
Talk about goals with your doctor
Dr. Perkins said it's important to remember that doctors have their own agenda to get through: Are you getting access to medicine? Any medication side effects? Swollen or tender joints? Last time you got labs? Up to date on vaccines? She said doctors will go on and on about their own checklist, but in reality, the patient just wants to talk about their own goals.
“A lot of times, that’s the disconnect between what a patient goes in hoping for versus what the doctor has to do at the visit,” she said. “Shared goals and shared decision-making are at the crux of a healthy relationship.”
She continued, that goals should be articulated right at the beginning of the visit. Aligning goals are going to be the most impactful to a physician.
Do you have a sleep disorder (eg. insomnia, sleep apnea, RLS) in addition to your PsA?