Jolie’s ‘medical choice’ takeaway: Be an informed, empowered patient

Life comes with many challenges. The ones that should not scare us are the ones we can take on and take control of.
– Angelina Jolie, American actress, film director, and screenwriter

I'm no Angelina Jolie, but I'll pretend I'm on the red carpet.

I’m no Angelina Jolie, but I’ll pretend I’m on the red carpet.

I don’t hero-worship actors or celebrities. I admire people, regardless of who they are and what they do for a living, who work to make the world a better place to live, whether it is through activism for social justice, environmental protection, or other cause. I do admire famous people who use their visibility and money to those ends because oftentimes their celebrity status highlights causes, issues, and injustices that otherwise would go unnoticed. Ever since Angelina Jolie became involved in human rights issues, first as a United Nations High Commissioner for Refugees Goodwill Ambassador in 2001 and later through her establishment of charitable organizations and her screenwriting and directing, I have been an admirer.

She gave me another reason to admire her. I applaud Jolie’s decision to write an op-ed piece in the New York Times about her decision to have a preventive double mastectomy. As many have commented already, her decision to discuss it openly and write about it so thoughtfully is notable because she is a glamorous actress in an industry that worships youth and beauty and eschews flaws.

There were detractors, as expected. Yes, she could afford the $3,000 BRCA genetic test and have the best medical care in the world for breast reconstruction, whereas many economically disadvantaged women do not have the means. Some in the medical community worry that her revelation will influence women with a history of breast cancer and create a spike in what is already a trend toward mastectomies that aren’t medically necessary for many early-stage breast cancers.

Rain cloud necklace by M.E. Moore (Gorgeous & Green, Berkeley), cuff by Alkemie of Los Angeles, cicada ring by End of Century in NYC, and earrings from Abacus in Portland, Maine.

Rain cloud necklace by M.E. Moore (Gorgeous & Green, Berkeley), cuff by Alkemie of Los Angeles, cicada ring by End of Century in NYC, and earrings from Abacus in Portland, Maine.

But here’s the thing: Jolie made her decision after exploring her options, talking with medical experts and undergoing genetic counseling. She is the empowered, educated patient whom healthcare reform advocates want in a healthcare system that we are trying to transform. This is a topic that I write about a lot in my work. Educated, empowered patients are an important component of healthcare transformation equation. As we shift, slowly but surely, from a fee-for-volume to a fee-for-value reimbursement model (meaning, hospitals and physicians get reimbursed not for how many patients they see, but how many patients they can keep healthy or get to a healthy status), healthcare providers need patients to take more responsibility for their own healthcare. (For that matter, healthcare insurers want that, too, but we all should take responsibility for our own healthcare.) Patients need to see all their options and understand the benefits and risks of every option. I applaud Jolie for emphasizing her careful deliberation. That’s the objectivity that is required. But there’s no denying the personal aspect of cancer. For Jolie, it’s her mother’s lost battle to breast cancer and wanting to be there for her children.

I am in an age group in which the number of women being diagnosed with breast cancer and other cancers rises. I have good friends who have survived it. I have met acquaintances who have survived it. When I first met David back in 1995, his mother underwent a double mastectomy shortly thereafter when she was diagnosed in her early fifties. Her mother and sister had died of breast cancer years earlier, and her niece died years later. In a commentary about Jolie, the chief of the breast service at Sloan-Kettering was quoted as saying that she has tried unsuccessfully to talk women out of having a mastectomy when it was not necessary. It is difficult to dismiss the personal, even in the face of evidence-based medicine. For example, I still have a yearly mammogram despite the differing screening guidelines and especially the U.S. Preventive Services Task Force mammogram guidelines which recommend women begin screening at age 50 and repeat the test every two years. On one level, women will be guided by their personal situation and history. So long as they are educated, they will make thoughtful choices, with ‘choice’ being the operative word for empowerment.

Whether you worry about what harm may come out of Jolie’s revelation, the overarching good is that we continue to have discussions about breast cancer and act on those discussions – how we can prevent it, raise awareness for it, raise money to defeat it, and especially support our family and friends who have to battle it. For all the grandmothers, mothers, sisters, and daughters out there, we owe it to ourselves and our loved ones to be brave and to be on the side of light and life.

Post script: Read about another amazing woman who survived breast cancer, Peggy Liou, whom I wrote about at the Dress at 50 here.

Vintage purse from the Fairhaven Antique Mall in Fairhaven, Wash., and Sam Edelman patent pumps complete the outfit.

Vintage purse from the Fairhaven Antique Mall in Fairhaven, Wash., and Sam Edelman patent pumps complete the outfit.