Living a good life with a serious illness: Lessons from a nurse with fatal breast cancer

I want to introduce you to Amy Berman, RN. 

Amy's communication to the Centers for Medicare & Medicaid Services was published in the Washington Post.

"News reports say you will soon make a final decision about paying doctors and other providers who talk to their patients about end-of-life planning. I have a fatal form of breast cancer, and I’d like to tell you how such conversations have allowed me to survive, and live well, in the five years since my diagnosis."

"I am a nurse, a nationally recognized expert in care of the aged and senior program officer at the John A. Hartford Foundation, which is devoted to improving the care of older people in the United States. Yet my perspective is not simply professional. For, you see, I live with Stage 4 (end-stage) inflammatory breast cancer. And while this metastatic cancer will one day kill me, the advanced-care planning conversations I have had with my health-care team have been lifesaving since my diagnosis."

"This kind of conversation initially helped my care team understand what was important to me and helped clarify my goals of care. Faced with an incurable disease and a prognosis where only 11 to 20 percent survive to five years...., I came to understand that my priority was to seek a “Niagara Falls trajectory” — to feel as well as possible for as long as possible, until I quickly go over the precipice. Quality of life is more important to me than quantity of days, if they are miserable days."

"I estimate I’ve saved about a million dollars by avoiding care I do not want, which includes the cost of chemotherapy, radiation, surgery to remove the breast, at least one hospitalization for that care, and the follow-up care to the surgery. Chemotherapy alone would have cost upward of $500,000. Insurance would have covered much of this, but not all."

"Meanwhile, I continue to work full time and have redoubled my efforts to improve the health-care system for older people. And I live a good life with serious illness."

"The benefits of a rule from Medicare covering such conversations are clear: better health, better care and, in many cases, lower costs. Most important, these conversations will be lifesaving, enabling those of us with serious illness to live the way we want to, fully and deeply for as long as possible."

Should doctors and other providers be paid to talk to patients about end-of-life planning? If so, why?

Love to hear your thoughts,

Donna


https://www.washingtonpost.com/national/health-science/a-nurse-with-fatal-breast-cancer-says-end-of-life-duscussions-have-saved-her/2015/09/28/1470b674-5ca8-11e5-b38e-06883aacba64_story.html