En español | Communicating with doctors and managing medical care have been among the most stressful aspects of caring for my loved ones — but also among the most rewarding.
I know I've had a positive impact on the quality of care my parents and my sister have received. Still, managing often complicated, confusing treatments can be overwhelming, and no one is perfect at it. Even doctors have told me they struggle when it's their turn to take on this role.
All we can do is make, or help our loved ones make, the best decisions we can with the most thorough information available. That's why communication is crucial. Many patients are adrift in the sea of health care, with no one to advocate for them. Here are some tips for communicating with your loved ones’ health care team.
Get legal authority to coordinate care
Make sure your loved ones have advance directives in place. A power of attorney (POA) for health care gives you or someone else on the caregiving team the legal right to talk with practitioners, manage your family member's health care and make decisions if the person is unable to do so.
In addition, most hospitals and doctors have patients sign a Health Insurance Portability & Accountability Act (HIPAA) release form, which indicates who is authorized to receive a patient's medical information. This will help even if you don't have POA.
In the absence of these documents, the health care team may still talk with you about medical matters if it's clear that you are the caregiver or next of kin, but it's at their discretion.
Be prepared for appointments
If you make their job easier and faster, medical professionals will be much more responsive to you. For example:
• Before seeing a practitioner for the first time, download new-patient forms from the office's website and complete them.
• Do your research. Bring your notes, and prepare written questions in a format that will allow you to quickly jot down responses.
• Bring a medical history, medication lists, test results, notes on symptoms and health records.
• If you are seeing a specialist, make sure the office has notes from the referring doctor. Practitioners in the same health care system may be able to share these records electronically; alternatively, you may be able to upload them to a doctor's online patient portal.
• If you've read about a new treatment you think might help your loved one, bring the articles and share them with the doctor.
• Ensure that your family member is ready for appointments, and allow plenty of time to get to them, including time to use the restroom and a buffer for the unexpected.
Ask about telemedicine
The COVID-19 outbreak accelerated the growth of telehealth, and the trend is likely to continue even after the pandemic subsides. Virtual medical appointments can be an effective and convenient tool for both practitioners and patients, especially for those with significant mobility issues or health conditions that make them more vulnerable to infections.
If you or your loved one is interested in telemedicine, ask the health care team about whether and when a video or phone consultation can replace a trip to the office. Check that your family member's insurance will cover telemedicine, and take these additional steps to get ready:
• Find out if you'll need any tech tools, like a video-chat app (such as Zoom, Facetime or WhatsApp), and make sure they work on the device you'll be using (phone, computer or tablet). Practice ahead of time if possible.
• Make sure your device is plugged in or fully charged.
• Log in 10 minutes before the appointment, to allow time to resolve any technical difficulties, but be patient if the doctor is running late and you have to wait.
• If you have a thermometer, blood pressure monitor and pulse oximeter (to monitor oxygenation and pulse), have them at the ready. The practitioner may want you to use them so she can record the results.
Document everything! You never know what might be important someday. I take notes at every appointment and procedure, and also record when tests take place, as well as the results. Often, I can find what the doctor said at the last visit more quickly in my notes than she can on her computer.
Share your notes with different practitioners. This is especially critical when loved ones are in the hospital, because there is so much going on and things can change quickly. I've caught many mistakes by reviewing my notes. For example, one of the many times my mom was hospitalized, the doctor said she should be taken off one of her drugs. I asked to see the medications list in her file on the hospital computer and discovered that that one hadn't been removed — a nurse was about to give it to her. I showed my notes to the nurse, who called the doctor to confirm and immediately stopped the medication.
If you're lucky, you are not the only person working with the health care team. While I held the primary health care POA for my parents, my sisters sometimes helped coordinate care. It was important that we kept one another updated and that practitioners knew it was OK to talk to any of us about our parents.
Many families designate one person to interact with the health care team. Do what makes sense in your situation. Make sure everyone involved is clear about his role, to avoid duplication and frustration. It's not helpful to have multiple people calling the doctor about an issue at the same time, but often one family member needs to be able to pick up where another left off.
Don't assume one doctor knows what another is doing
Electronic health care records have helped with sharing of patient information, but in my experience most practitioners don't communicate with each other. That winds up being your role as a family caregiver — you are the information hub.
Keep track of tests, diagnoses, treatments and plans, and share that information with each of your loved one's physicians. Many health care offices have online portals on which you can set up a profile for yourself or a family member, exchange messages, get doctors’ notes and see lab and other test results.
Also, update medication lists, and ask pharmacists to review prescriptions for possible negative interactions. I learned much more about my parents’ medications from our pharmacists than I did from their doctors.
Establish mutual respect
The health care team works hard, sometimes under difficult circumstances. Establish positive relationships with doctors, nurses, assistants, technicians, therapists, social workers, support staff and others, and be respectful of their skills and time.
And when any of them does a good job, be sure to express your gratitude. I've sent health care workers thank-you notes and brought flowers or cookies. I'm always amazed at how grateful and surprised they are — clearly, it doesn't happen often. They hear a lot of complaints, so appreciation goes a long way and contributes to better service.
At the same time, gain their respect. Model the kind of interaction you'd like to have from them, including being pleasant and patient. Ask clear and concise questions to avoid stretching out appointments, but be firm about getting them answered.
Focus on what gets results in each office
I've saved time and improved communication with providers by building relationships with receptionists, office managers, billing staff and physician's assistants. It may take some trial and error, but you'll figure out who in each office is most likely to get a question answered and get back to you.
Find out the best time to be in contact, and the best way — phone, email, text or online via a patient portal (sometimes you get faster results using this method). If you leave a voice message, let the recipient know if there are times you won't be available for a return call.
If there's an issue that needs to be addressed and office staff are not responsive, keep at it. Health care practices are inundated. With so many patients to care for, our requests may get lost in the shuffle. A pleasant phone call can help move your request to the top of the list. And don't be shy about calling often if the matter is urgent.
Don't keep score
Your job is to ensure the best possible care for your loved ones, not to win or lose, prove a point or get a doctor to apologize for a dropped ball. Sometimes you will have to swallow your frustrations (trust me, you'll have some) and focus on getting things done.
One time, when a lab made a mistake on my mom's tests, I was so furious I found myself screaming at the person on the phone. I knew how hard it was for Mom to get to the lab, and I didn't want to put her through a repeat of the test. When the office manager put me on hold for a few minutes, I realized what was happening: I was scared that Mom would get sicker, and my fear wasn't helping the situation. I needed to move past it. When the call resumed, we worked out a solution.
It was a reminder that managing health care for others can be unpredictable and emotionally draining. Try your best to go with the flow, gather information and keep communication open. Never hesitate to ask the heath care team for help.