Advocacy Series - Cancer Caregiving

Advocacy Series: An Active Health Advocate

6 years ago, I was in a meeting when I received a call.

Hi Jen, this is (x) from riding school, there’s been an accident…

Jeff took a few days off to ride at a motorcycle school (bucket list) and wound up in the hospital. He was in a highside crash and the force of his leg hitting the pavement pushed his femur into the hip socket and blew the pelvic bone into multiple pieces.

My friends at work made my travel arrangements while I rushed home, got the dog sitter lined up, and flew to Burbank.

After driving an hour to the western tip of the Mojave Desert, I made the local motel and hospital room my home for 10 days while he recovered from pelvic reconstruction surgery.

In the bed next to Jeff was an older man named Joe. Joe was about 5’ 3”, in his 80’s with limited mobility and full of stories. He grew up in Brooklyn, moved to CA many years ago to work on movies and now lived alone in the area. He shared stories of growing up in NY, we talked Italian food and I helped him when the nurses were busy.

Joe came to the hospital for a knee replacement and his surgery was delayed due to some heart issues. We celebrated Halloween with Joe, had several meals together, and a week later, Joe was still waiting for his knee replacement. He was admitted a few days after Jeff, and was there when we left.

Joe’s only visitor was a friendly neighbor who brought the mail and took care of his apartment.

He was managing his hospital stay solo.

Note to hospitals: the privacy curtain really doesn’t provide privacy (you know this, right?).

I heard Joe asking for answers and not getting them. I felt his frustration. He wanted to understand what was happening to him. He wanted to know why he was there and he wanted to feel heard. Instead, the conversations left him confused.

Joe needed an advocate.

What is an Active Health Advocate?

An active health advocate represents the needs of the patient. They champion their voice and bring another set of eyes and ears to the discussion. They bring clarity to challenges and focus on what’s next.

When faced with medical issues, we hope our loved ones can tap into their self-advocacy skills, articulate their needs, and make informed decisions that support their quality of life. When those skills are compromised, that’s when an active advocate can be invaluable.

To advocate is a verb. It requires action. Active advocates choose action over inaction or indifference.

Most of the time, it’s the caregiver, family members or friends who take on the role of the advocate.

And, it’s a valuable gift we give to our loved one.

Johns Hopkins expert John Burton, M.D. encourages all of his patients to have an advocate, only about 70 percent do. “It would be better if it were 100 percent,” he says. “The older you are, the more important it is to have another person with you during visits.”

“Having two people hear the discussion and making sure they understand is much better than just one set of ears,” Burton says. “It’s difficult for one person to remember everything that’s been discussed.”

For those who do not have relatives or friends who can help, there are private, personal health advocates for hire. These advocates dive into research, medical billing, handle insurance claims, care transition & coordination, even sit with your loved one while they’re in the hospital, especially when family or friends are unavailable, or live miles away. Many times at cancer centers or hospitals, they will provide nurse navigators to explain treatment options, help with appointments and provide support upon diagnosis. And all of them have social workers who are skilled at navigating the medical system and providing clear direction and support.

Resources worth checking out: 

 

Next Up in the Series…5 Ways to Be an Active Health Advocate.

Jeff and I are teaming up! Navigate the medical maze by becoming an active health advocate. We’ve got 5 tips coming your way this week that will help. We look forward to sharing our perspectives and learning from your experiences.

We created Secondhand Cancer to equip cancer caregivers and their loved ones with real-life perspective, practical tools, and resources so that we can all better cope with the daily demands of living in a house where cancer exists.

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