It has been more than five years since Amy Berman was diagnosed with inflammatory breast cancer, which is always fatal. Even with aggressive treatment, only 11%-20% of patients make it as far as she has. But Amy did not opt for aggressive treatment; quite the opposite. As she wrote just this past November,
“… unlike most people with my medical condition, I’ve never been hospitalized—no surgery and none of the combination infusions. I take medication to hold back the cancer but, with my team, I choose treatments with the least burden and side effects. And this has helped me thrive!”
She is not only surviving, she is thriving, enjoying life, and working for all of us, so that we will have the option for advance care planning with our doctors… as she has done.
“The Centers for Medicare and Medicaid Services (CMS) recently announced that, beginning in 2016, Medicare will pay for advance care planning. If done well, this will give people the chance to talk about their care as they go through serious illness and at the end of life. This has been lifesaving to me. I believe it is game-changing for us all… According to the Kaiser Health Tracking Poll in September, 89 percent of the public favors having doctors discuss end-of-life care issues with their patients. And 81 percent say Medicare should cover the cost of those discussions.
Now, it will….”
I am following Ms. Berman’s journey with great interest. Here’s what we wrote in 2013 about her choice, and the choice that we all may one day face.
Live long and prosper, Amy Berman!
Why do we routinely sentence doomed patients to more pain and suffering and degradation of the quality of their remaining life?
Last year, we noted the story of Amy Berman, who was diagnosed with a highly lethal form of breast cancer in 2010. As Theresa Brown writes in the New York Times, Ms. Berman consulted with an oncologist, who wanted to do a mastectomy, chemo, radiation, the works. “Why?” she thought. It made little sense. Her disease is incurable. She wanted quality of life as long as possible, not quantity at any miserable cost. She dumped the oncologist and opted for palliative care.
Here we are two and a half years since her diagnosis [UPDATE: past the five-year mark!!], and she is still busily working, writing, and Tweeting about her still-active life. Had she gone the aggressive-treatment route, she would have been sick, weak, and tied to endless appointments and hospitalizations for her remaining time on Earth, she reasons. She is satisfied with the choice she made, although she laments that too often, patients never have their real choices fully explained.
Ms. Berman is fortunate to work in the health-care industry, and was therefore more aware than most of the option of palliative care, and especially of her right to say “no.” Some of my own family members have not been so fortunate. In 2009, two relatives were diagnosed with different, but very deadly cancers; their prognoses were poor. Very poor. And yet, both were subjected to chemotherapy and one also had radiation in the hopes of at least slowing the progress of their diseases. All that happened was that both of them were made miserable, and both were gone within six months.
As Mary Elizabeth Williams writes in Salon, doctors too often fail to explain just what the patient is in for, and then when the horrid side effects kick in, the doctors too often discount their patients’ complaints and fail to understand the full impact of those symptoms on their patients’ lives… both physically, and psychologically. Even for younger patients with better prognoses, it can be too much to bear. Williams writes:
I have friends who have done chemo and surgery and other treatments for various ills who now say they’re done because it was so bad and they’re not going back. And I wonder if it would have been different if their doctors had just said to them initially, “This is going to suck” — if, instead of assuming that patients will always grasp at any straw to live a little longer, the doctors had found the courage to have some honest quality of life conversations.
But in Ms. Berman’s experience, doctors are sometimes not even open to a discussion of quality of life; her oncologist was aggressive, take-charge, and had a plan that he uses “with all my patients.” I get the impression that she wasn’t even a complete person to him. She was a battlefield on which to wage a terrible, destructive war against a disease that is invariably fatal. Never mind that the ultimate outcome is already known: unless she gets hit by a bus or something, inflammatory breast cancer will eventually kill her. So why shouldn’t she make the call on how to proceed with her own care? Why shouldn’t any of us?
Medical professionals may reply that the layman does not understand all of the implications of their diseases or treatments; that they should trust in those who know best. I disagree. I think they should diagnose, explain the real options to include the real details of those options, and then craft a treatment plan with the active participation of the patient who has to experience the whole thing. Some patients will be just as determined as their doctors to beat the unbeatable. Others, like Ms. Berman, will opt for palliative care only. But it should be their own choices, not just their doctors’.
I will close with the story of Stamatis Moraitis, who was diagnosed with terminal lung cancer in the US in the 1960s, and given nine months to live. He went home to the Greek island of Ikaria to die. Nine months came and went. Nine years came and went, and more. And he is still there, apparently cancer-free and tending his olive groves, as Andrew Bomford reports for the BBC. Well, science can’t explain everything.
I am secretly hoping the same for Ms. Berman.
Related article: End-Of-Life Decisions: Amy Berman, Living and Dying In Her Own Way