Choosing My Care on My Terms

Just one year after celebrating my 50th birthday, I was walking down a New York City street with my mother on a misty, gray November day when my phone rang. My life was wonderful up to that point, but looking back, I can see that the weather was an appropriate backdrop for the news I was about to receive.

My oncologist was on the other end of the line. She confirmed—as gently as someone can given the circumstances—that the breast cancer I’d been diagnosed with weeks earlier was in fact stage IV. Worse still, it had spread to my spine.

Despite being diagnosed with stage IV cancer, Amy Berman lives a full life thanks in part to a care plan that prioritizes outcomes that matter most to her. (Photo courtesy of Amy Berman)

My diagnosis, of inflammatory breast cancer, capped a dizzying series of appointments and tests. Inflammatory breast cancer is marked by a bump—not a lump—and the breast itself can become swollen and red, hence the inflammatory name. I learned that my inflammatory breast cancer was incurable and that I would be lucky to live for five years.

But that rainy-day phone call from my oncologist came eight years ago next month. Since then, I’ve made choices about my care that reflect what matters to me and how I want to live my life. At the same time, I’ve worked at the John A. Hartford Foundation, where I lead efforts to develop, test, and spread evidence-based models of care that improve the care of older adults, who account for the majority of serious illnesses.

In 2012, two years after being diagnosed with a terminal illness, I climbed the Great Wall of China. In 2018, I’m still living a full, active life, and I’m thriving.

Two Oncologists, Two Different Experiences

While I knew my cancer was incurable, I learned in my work about a specialist in inflammatory breast cancer at a top-notch cancer center in a nearby state, and I thought he might be able to help.

We didn’t get off to the best start. After what barely amounted to a hello, a review of slides from my New York oncologist, and a brief physical exam, he laid out a treatment plan: chemotherapy, radiation, a mastectomy, and, finally, more chemotherapy.

All I could think was, Why? Why such an aggressive treatment plan for an incurable disease? He told me that if I responded to the treatment, I might live a bit longer, but that nothing was guaranteed. I paused to think about the mastectomy. I didn’t want to endure a painful, debilitating surgery and its side effects to remove my breast when the cancer had already spread from it. “This is what all of my patients do,” he said, with a hint of annoyance.

Our appointment didn’t last much longer.

Back in New York, my oncologist couldn’t have been better. She asked what was important to me, and I explained that I wanted treatment that helped me maximize my good days, not treatment that aggressively pushed simply for more days while leaving me miserable. I wanted it to be like Niagara Falls, strong and steady for as long as possible before dropping off a cliff.

In consultation with my oncologist—and my mother—I opted for treatments that included the least amount of side effects. These medicines helped hold back the cancer but didn’t stop me from feeling well. Because the cancer was already floating around in other parts of my body, there was no point in having a mastectomy. So I didn’t. It would have caused me pain, swelling, and time away from going to work and living my life—everything I wanted to avoid.

Using My Story to Guide My Work

My healthcare team uses my goals and preferences to guide the course of my care plan. This overlaps squarely with PCORI’s work to fund research that provides evidence to help people make better-informed healthcare choices based on their own situations. After all, you can’t be patient centered without consulting and planning with the patient.

It is also the mission of my work with the John A. Hartford Foundation, where we have funded efforts to improve care for older adults to better meet their needs and maintain their independence and dignity since 1982. We have invested roughly half a billion dollars in the development, testing, and spread of models of care and training of the health care workforce, focused specifically on family caregiving, care for serious illnesses, and creating health systems that are friendlier to an aging population’s needs.

There are nearly 18 million family caregivers nationally, but they’re largely invisible in the healthcare system. Our grants improve the ability of health systems and providers to identify, assess, and support family caregivers.

I like to say that palliative care is the best friend of the seriously ill. It is an extra layer of support that goes along with the care provided by my oncologist. Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer. We fund work that develops evidence-based care models and tools to educate the healthcare workforce, and work that informs public policies that support care for the seriously ill and their families.

A Partnership with PCORI

If all of this sounds familiar to the PCORI audience, that’s no accident. PCORI has awarded $161 million to fund 31 comparative effectiveness research projects that focus on older adults. PCORI and the John A. Hartford Foundation have also worked together to fund the CaRe-Align initiative—now known as Patient Priorities Care—which seeks to realign care around older patients’ self-identified health goals, improve patient outcomes, and lower healthcare costs.

And at PCORI’s upcoming Annual Meeting, in addition to being a keynote speaker, I’ll be moderating a breakout session highlighting results from PCORI-funded projects that seek to improve care and outcomes for older adults with advanced serious illnesses and their caregivers.

One of the studies we’ll highlight in the breakout focused on patients with serious illnesses who simply filled out a form about their goals for care and how they’d like to discuss those goals with their clinicians. The research team published in JAMA Internal Medicine that 74 percent of patients who filled out the form had goals-of care conversations with their clinicians; only 31 percent of patients who didn’t fill out the form had those talks. This simple study shows the impact that better communication and care planning can have, but also how far we have to go.

Looking forward

Sometimes it’s hard to believe it’s been eight years since my diagnosis. I feel and look great. I work full time. I travel and enjoy my family and friends. I am a walking triple aim of better health, better care, and healthcare savings from avoiding invasive treatments that I didn’t need or want.

But the care that I receive is the exception to the rule. Here’s to hoping we can all work together to change that.

The views expressed here are those of the author and not necessarily those of PCORI.