TS_130115_Beach300When I was diagnosed with an aggressive form of cancer—one that has no cure—I debated whether to share this information publicly. Discussions about "death panels" were all the rage. It infuriated me to think that uninformed folks in the policy world would aim to limit open discussions with patients about their diagnosis, prognosis, and treatment options.

How could care be patient centered if patients and families were excluded?

Because I found an oncologist who was transparent and asked about my values, I was able to opt for care focused on feeling well for as long as possible, not the typical let's-throw-everything-we-have-at-this approach. The latter would have made me feel terribly unwell without the likelihood of a real benefit later. I told family, colleagues at work, and my closest friends about my illness and decisions about treatment. I debated whether sharing my terminal diagnosis and decisions could help others. I wondered about the benefits and risks. Would I be marginalized professionally? Would I be attacked for my views and choices? Could going public cause pain to my family?

I decided to be transparent and blog about my health and care.

There are others like me who use their illness as a teachable moment. An extraordinary piece recently appeared in The New York Times about a nurse with advanced, incurable cancer. She called the nursing school she had graduated from decades before to see if students might want to learn first-hand about serious illness and dying. This brave woman opened her home and her heart for a higher purpose. Martha Keochareon encouraged the first-year students to feel her tumor. She discussed her life, her health, and her pain in deep detail. She gave nursing students a window into the world of a dying person. Her final days served as a transparent and powerful teachable moment.

When I decided two years ago to be transparent and use my terminal diagnosis as a teachable moment in the HealthAGEnda blog, I hoped to make a difference and I think I have. Since I posted the first blog on my health and care in January 2011, some of the posts have gone viral and were reposted on such sites as The Health Care Blog. Blogging led to speaking engagements, NPR, the authoring of a Narrative Matters piece in Health Affairs that was one of the most-read articles in 2012, mentions in Forbes and Politico, a piece in The Washington Post, and Institute of Medicine testimony with recommendations on Palliative Care and patient-centered care.

Later this month I will provide a keynote address to all of the Patient-Centered Medical Homes in Massachusetts on why it is important to engage patients and families. Once again, I will share my story and hope they see me as a "walking triple-aim" who receives better health and better care at lower cost because patient and provider are a team.

While I believe that my decision to embrace transparency has made a difference and helped inform the debate over patient-centered care, I also have benefitted personally. I received an outpouring of love and support. I also learned that many people suffer in silence. I gave some people the strength to share their own diagnoses or to be more involved in their care decisions. I received calls and letters when people were at a health crossroads. Some families shared anger that their loved ones died without knowing about palliative care, an extra layer of support that addresses pain and symptoms whether one is in the curative mode or not.

One friend shared that when he was a boy, his father had been sequestered to a bedroom as he fought cancer. My friend was not supposed to know about or see his father's illness. He wished his culture had felt differently, that his family could have been open. He missed that time with his father. Many have shared that they thought about what kind of care they would want for themselves or what kind of care they want to provide. I learned that sharing is its own reward. Being transparent has given me great solace.

I want to thank a few folks who helped me think about the risks and rewards of using my health as a teachable moment before that first blog was posted. Hats off to Cory Rieder, John Beilenson, Diana Mason, Barbara Glickstein, and my daughter Stephanie.

Stephanie said my decision was a "no brainer" and I agree.

Editor's Note: This is the latest in an ongoing series of Health AGEnda blog posts by Amy Berman chronicling her health and care since she was diagnosed with Stage IV inflammatory breast cancer. For earlier posts, please read:

The Essential (Before I Kick the) Bucket List

Health Affairs Focuses on Cancer

Think Silver-Not Pink-for Breast Cancer Awareness Month

Can the Blind Lead the Seeing?

Making Hard Decisions Easier

I’m Dying to Know

Can Good Care Produce Bad Health?