The Accidental Advocate
by Karen Vogel*
Like many patient advocates, personal experience transformed me into a new career. I was prepared and motivated. I had a professional network and confidence that I was smart enough to figure it out as I went along. What I didn’t include in my business plan was ironic shock.
One of my champions was my neighbor Laura, who lived next to me for 20 years. For a while she listened to me whining about my work in health insurance management, my aging parents, the screwed up healthcare system . . . and challenged me to stop complaining and take action. And so I did. The main impetus was my mother’s death. It forced me to become a long distance caregiver for my father, which turned out to be a wonderful adventure for both of us. I quit my soul-sucking corporate job, went back to school and retrained. I started my own company 3 years ago and worried about finding clients. “No problem,” said Laura, “my aunt Jane is sick and needs someone to figure out her insurance.” Client #1.
Four months into my new occupation, on a Friday evening in April 2016, I got a call that Laura was in an emergency room. She had been struggling with memory issues and a coworker dragged her to the hospital under protest. I rushed over yelling “I’m an advocate! Let me document everything!”
Laura had glioblastoma multiforme (GBM) Grade 4, the worst kind of brain cancer, usually terminal within 18 months. On Sunday morning a surgical team was in place to make sure she got a lemon-sized mass removed from her head. Laura became client #7.
Fast forward. For 2 and a half years Laura had radiation, chemotherapy, experimental drugs. She wore a newly approved tumor-treating field cap (Optune) on her shaved head and became an ambassador to educate others about the device. She encouraged me to publicize her journey through the media. She was gracious, funny and incredibly physically active. She was stubborn and remained positive about kicking this annoying cancer in the butt.
Early on, a core team of friends was assembled to make sure every detail was covered. I was the organizer of appointments and paperwork. Jenny was the nurturer and sounding board. Anne was our guidance counselor and mentor to Laura’s children. Her brother Steve was the family liaison and scientific analyst. He made 21 trips back and forth, every month, from New Jersey to Seattle. Many others cooked, took walks with her, and showed up when it counted.
Our team learned way more about brains than we ever expected. I read research articles late at night, looked for clinical trials, wrote CaringBridge posts on airplanes, helped Laura connect with community support groups. I shepherded her through 4 insurance plans as her options narrowed (Premera, Regence, Kaiser, Medicare), handling the puzzle of referrals, tracking and bills. Friends, family and neighbors escorted her to frequent doctor visits. Meanwhile that damn gelatinous tumor in her left temporal lobe was wreaking havoc. It slowed down for a while, then another tumor popped up in her cerebellum as a final sucker-punch.
Laura’s communication and visual skills started declining a year ago. Six months ago her brother and I made sure she wasn’t allowed to drive, taking away her independence. Two months ago we shifted her into palliative care when she was no longer able to make decisions. One month ago all treatment was stopped as she went onto hospice status. One week ago she couldn’t get out of bed. There was 24/7 monitoring and morphine to prevent pain. Everything was done correctly from start to finish. So why does it all seem so futile?
Laura died at home on December 16, 2018, holding my hand. She was 54 years old. She gained some extra months due to excellent care and her fighter attitude. She constantly smiled and said “I’m fine!” until she had a stroke and could no longer talk. I’m sad, angry and frustrated that there was never an alternate ending. Laura was lucky to have financial resources, superb medical treatment and kind friends. All of her doctors, nurses, pharmacists, therapists and aides were compassionate and top notch. I’ve been repeatedly told by her neuro-oncology group that what our support team did was not typical; she had the best possible experience for a monster disease that is barely understood, rare, and relentless. It doesn’t give me comfort.
I’m up to Client #65. I’m inspired to do what I can to at least make people’s insurance hassles easier, and I can usually tell a success story. I did my best with a partner who I’ve lost and will forever grieve. Laura will leave a legacy of joy. I miss my friend.
For colleagues, here are 3 takeaways: 1) No matter how much you plan, life throws curveballs. 2) Advocating for friends can be awkward and also deeply meaningful – set your boundaries as possible. 3) Having a strong team makes dealing with a difficult illness more bearable and improves every facet of care. Despite the sad outcome, this is a story of triumph.
Karen Vogel, BCPA
~ January 3, 2019
*Find Karen at Kaz Advocate, where she provides personal advocacy services to patients who need help with their care, or managing the cost of their care.