Why we could all probably use a good health care advocate in our corner

two hands

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Yes, we could all probably use a health care advocate at some point in our lives.

Two years ago, I got a phone call from the mammography center after I’d gone in for my yearly mammogram. The scheduler told me the radiologist wanted me to come back for some additional x-rays. Magnified views so he could take a closer look. A closer look at what, I blurted as my heart began to race and my brain screamed into overdrive.

I managed to schedule the appointment and as soon as I hung up, I called my husband. I need you to be there with me I told him. To listen. To ask questions. To keep me calm and grounded. To be my support person.

I play a similar role for my mother, who has Alzheimer’s disease. I take her to medical appointments. I ask and answer questions. Take notes. Make follow-up appointments. Fill out and interpret forms and paperwork. Keep track of her medical history. What medications she takes.

Medications

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When my father was still alive, he was on tons of medications. When he couldn’t keep track of them anymore, I took over. Counting them out every week into a multi-level pill box. Researching how one might interact with another. Working with his doctor to get him off medications he no longer needed or were causing other unnecessary problems.

Maybe you’ve been in a similar situation. Either on the giving or the receiving end or like me, on both. Today’s health care environment is complicated and often difficult to navigate even when you’re feeling well. If you want some extra support, you might consider having a healthcare advocate.

If your advocate knows what needs to be done and does it well, you’ll be in a better position to focus on what’s most important at the moment — your health.

How can a health care advocate help?

What your health care advocate can do depends on what you need. It’s important to figure that out and to be clear about it. Maybe you want someone to sit in on doctor’s appointments or maybe you need help dealing with your insurance company.

Here’s a list of things an advocate might do to help:

  • Paperwork
    • Make sure you have all the necessary papers, forms, insurance claims filled out.
    • Read those forms carefully, especially any that you are asked to sign.
    • Ensure that papers are filed properly and on time.
  • Insurance issues
    • File necessary paperwork, assist with or follow up on any issues that may arise.
  • Medical appointments
    • Accompany you to medical appointments. Act as your second set of ears. Listen, take notes, ask questions.
  • Appointment preparation
    • Medical appointments can be pretty short. Your advocate can help you prepare the list of questions you want to ask and make sure they get answered.
  • Medical historian
    • Gather your medical history, organize and update the information as needed.
  • Medication oversight
    • Make sure your prescriptions are up to date and filled. Make sure you take your medications properly.
  • Relationship building
    • It’s important to let your doctor and other caregivers know who your advocate is and how you want him/her involved in your care. When we’re under stress or don’t feel well, communication may not be one of our strengths. A diplomatic, knowledgeable, articulate advocate can make all the difference.
  • Decision making
    • You may be bombarded with decisions you have to make. Your advocate can outline your options for diagnostic tests, procedures and treatments, as well as hospitals and doctors. Help you explore where to get second/third opinions, if necessary.
  • Spokesperson
    • Appointing someone you trust to speak on your behalf can help ensure consistent communication and less opportunity for confusing, conflicting, or misunderstood messages. Make sure your providers and your loved ones know that your advocate is your designated spokesperson.
  • Difficult conversations
    • Sometimes loved ones don’t want to talk about tough issues — like how you want to be cared for at the end of your life, final wishes, funeral arrangements. You should be able to talk about those issues with your advocate and he/she should be trusted to carry out your wishes.

To me, trust is the single most important thing to consider if you want someone to be your health care advocate. Whether you choose a family member or a friend or hire a professional to be your advocate, it needs to be someone you trust. And it needs to be someone who is able to communicate well — with you and with your health care providers.

There are currently no state licensing requirements or national accreditation or certifications for health care advocates. If you’re going to hire someone, ask for references and make a careful assessment. Listen to your gut — it’s something we don’t always pay attention to, and we should.

When I first started helping my parents with their medical needs, we went together to see an elder law attorney. She drew up Medical Powers of Attorney giving me the authority to act on their behalf. Some of my siblings were also included, but we agreed that I would be the “first responder.” So far, the arrangement has been successful for all of us. It’s a wonderful thing when families can work together in the best interest of their loved ones.

Patient safety

Last summer, I wrote the post 10 important tips for preventing deadly medical errors and infections. Kathy Day provided the tips for the blog post. Her family was blindsided when her father died of MRSA pneumonia. He got the infection in the hospital. As a nurse, Kathy had always tried to be a strong patient advocate. After what happened to her father, patient safety and preventing medical errors became her passion. Check out her blog McClearyMRSAprevention. 

Kathy urges us all to be more involved in our own health care. “This is really important, “she says. “I don’t think patient engagement is an option.”

Sometimes we can’t advocate for ourselves. We need someone who is competent and trustworthy to do it for us. If you’d like more information about advocating for yourself or someone else, EngagedPatients.org. offers some useful patient education resources.

Upcoming event

If you live in the Kittery area, in April, elder law attorney, Michael Guy, and his wife, Jenny Cutten, a legal secretary, will be doing a presentation on the basics of being a healthcare advocate. You’ll find details of the event on the Catching Health calendar.

Have you ever been a health care advocate for someone or has someone been one for you? What have you learned from the experience? Are there any resources that you found helpful?

Diane Atwood

About Diane Atwood

For more than 20 years, Diane was the health reporter on WCSH 6. Before that, a radiation therapist at Maine Medical Center and after, Manager of Marketing/PR at Mercy Hospital. Now she writes the award-winning blog Catching Health with Diane Atwood.