Amy Berman, left, and her daughter Stephanie at the American Cancer Society's Making Strides event in New York's Central Park.Maggie Mahar is an influential blogger on topics from health care reform to the economy. Maggie and I agree that we are not making sufficient strides in the war on breast cancer. We disagree that I chose life over longevity. I chose life and longevity.
In honor of breast cancer awareness month, Maggie has allowed us to repost a blog she featured in HealthBeat on Oct. 11th. I am grateful that she uses her potent prose to draw attention to the needs of older adults. Cancer is, after all, primarily a disease of aging. Two-thirds of those living with cancer are age 65 or older.
For me, it’s been three years this month since I was diagnosed with stage IV inflammatory breast cancer that had spread to my lower spine. I celebrated three great years living well—yes, well—with cancer by walking with my daughter in the American Cancer Society’s Making Strides event in Central Park on Oct. 21st.
I credit palliative care with helping me live well. I credit the American Cancer Society with raising more than $500 million dollars in the past 20 years to support research, care, and services. I hope you enjoy Maggie’s blog and the “pinked-out” photo with my daughter, Stephanie.
Are we making strides? You bet. But we still have a long way to go. Another breast cancer awareness month may be ending, but the fight against this disease continues.
Breast Cancer: Catching Up With Amy Berman, a Woman Who Chose Life Over Longevity
By Maggie Mahar
HealthBeat readers may remember the two-part post that I wrote about Amy Berman back in October of 2011.
Part 1 began: “When Amy Berman was diagnosed with Stage IV breast cancer a year ago, she made a courageous choice. Instead of fleeing death, she decided to pursue life. Rejecting chemotherapy, radiation and surgery, she chose palliative care instead.”
Berman knew that her stage IV cancer could not be cured. As a nurse, she also knew what women who undergo aggressive treatment endure—and that, despite that treatment, many will never escape the disease.
As Clifton Leaf points out in his new book The Truth in Small Doses, when people talk about the strides that we have made in our War On Cancer, they greatly exaggerate our success. When it comes to breast cancer, for example, 30 years after we launched the war, the number of women per 100,000 who die of breast cancer had actually grown from 28.4 per 100,000 in 1970 to 29.2 per 100,000 in 2000.
Over the next 10 years, the death rate fell to 26.2 per 100,000 women. But we know that this was mainly because we have gotten better at detecting breast cancer early, when the tumors are small and easily removed. By contrast, most of the caustic drugs designed to defeat cancer have disappointed.
Of “the myriad compounds that have set the research community abuzz, the ones that have already built up billions of sales,” Leaf observes, “there is little evidence” that “they have had more than a modest effect on long-term patient outcomes. Taken together, this multitude of drugs has been responsible for about a quarter of the reduction seen in the standardized death rate.”
Granted, five-year-survival rates have improved. But this, too, is largely because we are diagnosing cancer earlier. In the past, if the disease was detected when a woman was 65 and she died at 67, we would say she died of cancer. Today, if a tumor is detected when she is 62, and she lives a few months past 67, she has made it to the five-year mark and is counted as a “survivor.” Thus Elizabeth Edwards’ name was added to the roll of victories–even though breast cancer killed her.
By measuring our progress in terms of five-year-survival rates we “transform nearly six hundred thousand annual deaths into a victory-in progress,” Leaf notes. This allows us to hide from what he calls “an unshakable reality: the rising toll from cancer is plain to see, but this method of counting is so firmly established and so commonly used by health care researchers and policymakers, that few remember anymore that it’s a statistical sleight of hand.”
Even If She Could Not Be Cured, Why Didn’t Berman Try to Buy More Time?
After she was diagnosed, Berman secured an appointment with a pre-eminent researcher/clinician in the field of inflammatory breast cancer.
He was clear about what she should do: Chemo, radiation and a mastectomy, followed by more chemo. This, he told her, is “what I recommend for all of my patients.”
In part 2 of my 2011 post, I quoted her memory of that conversation:
I pressed him, “Why do the mastectomy?” I asked, puzzled. “The cancer has already spread to my spine. You can’t remove it.”
His brow furrowed: “Well, you don’t want to look at the cancer, do you?”
He made it sound like cosmetic surgery. Considering that a total mastectomy includes months of pain and rehabilitation, I thought that worrying about the view was secondary.
She continued to press him.
“But what about the side effects of radiation?” I asked. “I’ve heard they are terrible.”
He frowned and seemed annoyed by my questions. “My patients don’t complain to me about it,” he replied.
Berman was not impressed.
Of course his patients never complained to him. Most of them were probably unaware that other, less aggressive treatments were viable options for patients with this stage of disease... This doctor, top in his field, was reflecting the bias of our medical system towards focusing only on survival... The patient’s goals and desires, hopes and fears, were not part of the equation.
She rejected his advice.
My goal was to maximize the quality of my life, so I can live, work, and enjoy my family with the least pain and the most function.
“Getting As Many Pulsations as Possible Into the Moment”
Amy, who was in her 50s, was less interested in how long she lived than in how well she lived. All of us face the limits of our mortality, but even if we cannot extend the length of our lives, we can deepen the quality of our experience on this planet.
When writing about Amy two years ago I quoted the late 19th century writer Walter Pater: “We are all under sentence of death . . . we have an interval, and then our place knows us no more. Some spend this interval in listlessness, others in high passions . . . the wisest, in art and song. For our one chance lies in expanding that interval, in getting as many pulsations as possible into a given time.”
In 2010, this is what Berman set out to do. A year later, she reported that the palliative care was working:
I feel great. I have less pain than I did one year ago. The shooting pains I often felt last year in my right breast have almost entirely vanished, thanks to my hormone-suppressing drugs. My lower spine—the site of metastasis—aches only occasionally, and only when I overdo it. If I get plenty of rest and fluids, eat right, and avoid standing for long periods or lifting heavy objects, I remain pain free.
“Jet-Skiing to the Statue of Liberty”
That was the last I heard from Amy in 2011. We had made tentative plans to meet, but two weeks after I wrote about her on HealthBeat, I left The Century Foundation, and we lost touch. I wondered if she was still alive.
So you can only imagine how delighted I was to find Amy Berman again just a few weeks ago, not only alive, but thriving, and blogging on the John A Hartford Foundation’s Health AGEnda website. (Hat tip to BostonHealthyNews’ Tinker Ready who called attention to a post by Berman in a recent Health Wonk Review.)
On the Health AGEnda site, I found several posts by Berman, including one dated August 13, 2013 where she writes about how palliative care help patients live longer and better lives and adds: “Did I mention that I went jet-skiing to the Statue of Liberty last weekend ?” The post includes a picture of Amy, on the water!
In another post, published at the end of August in 2012, she confides that she had thought long and hard about what many people who are dying think about: their “Essential (Before I Kick the Bucket) List.”
Ultimately, she writes:
I realized that it’s not about taking a trip or doing something thrill-seeking and new. I am already doing the things that matter most to me: making family dinners, talking with my grown children, visiting with dear friends.
Yet there is one thing—just one—I am impatient to see before I die: better health care.
A Turning Point?
Her most recent post suggests that she may get her wish. The piece is titled “Stunning New IOM Report Reframes How We View Cancer,” and it hails a new Institute of Medicine Report that “swings for the fences” as it suggests how we might lift the quality of Cancer care.
By emphasizing “quality of life and palliative care,” the report “represents a fundamental shift,” Berman writes, “from cancer care being measured solely in terms of three-month increments of length of life to one that recognizes this is not the only goal.”
The IOM report “breaks new ground,” Berman explains, by emphasizing ”that cancer is primarily a disease associated with aging.” Today, “two-thirds of oncology patients are 65 or older.” The average breast cancer patient is diagnosed at age 61.
Going forward, “the older adult population is expected to double by 2030 leading to a 45 percent increase in people developing cancer.” Nevertheless “cancer care—until now—has largely ignored the unique and complex needs of older people and families living with cancer.”
While research that focuses on buying another six months of life—at whatever cost—may help a 33-year-old mother of two who would give anything to have another few months with her children, it is not as well suited to meet the needs of a 65-year-old struggling with cancer while suffering from two other chronic diseases.
Of course, some 65-year-olds will want to battle the disease to the end. It is important to remember that, as Berman noted in a recent email: “palliative care can be coupled with curative treatments to offset the debilitating side effects. Or for someone like me, to support the best quality of life.” Too often, people confuse palliative care with hospice care. Hospice care is designed for people who are dying; while pain is controlled, most other treatments stop. By contrast, palliative care patients may continue treatments as long as they wish.
Indeed, the goal of palliative care is to let each person “die in character.” As Elizabeth Kubler Ross, author On Death and Dying put it: “To die with dignity to me means to die within your character.” In other words, you are still yourself. Your self-hood is intact. She elaborated: “That means that there are people who have used denial all their life long; they will most likely die in a state of denial. There are people who have been fighters and rebels all their life long, and by golly, they want to die that way. And to those patients, we have to help them, to say it’s okay.”
Or, as palliative care pioneer Diane Meier explained to me: “the goal of palliative is ‘to support the person to stay within their (own) compass.” The caregiver is not selling death; she is not attempting to persuade the patient to accept death. Nor is she trying to lengthen life. (The patient will die when the time has come.) Whether the patient dies sooner or later is not what is at stake: what is important is how she dies.
Meeting the Needs of Older Cancer Patients
“Cancer care for older adults … is especially complex,” the IOM report states. It goes on to say:
"There are many important considerations to understanding older adults with cancers’ prognoses and formulating their care plans, such as altered physiology, functional and cognitive impairment, multiple coexisting morbidities, increased side effects to treatment, distinct goals of care, and the increased importance of social support. The current health care delivery system is poorly prepared to address these concerns.
"The problems are many ... Evidence about care and treatment is based on research that has often excluded the older adult population. Perhaps most egregious, people are not actively engaged in decisions about their own care. As a result, care may not fit with their values and goals."
Patient-Centered Medicine vs. the “Juggernaut” of Our Health Care System
Care that is tailored to an individual’s beliefs, hopes, and tolerance for pain is called “patient-centered medicine.” Many health care providers endorse the idea. But once patients are admitted to a hospital, they often discover that they are “in the system”—much as if they were in a prison. There, they are expected to submit to the hospital’s one-size-fits-all protocols: “This is what we always do.” Those who resist risk being labeled “difficult patients.”
An older patient may have a particularly hard time fighting the system. “How,” Berman asks, “can the millions of older Americans facing a terminal illness or chronic disease . . . possibly stand up to the juggernaut of our health system and say, ‘No. I want care that focuses on my goals, care that is centered on me? ’”
Berman firmly believes in “shared decision-making”– a process that I have written about in the past. But for it to work, physicians must be honest about the limits of the treatments they suggest, the likely course of the disease, and the chances for survival. Too often, Berman notes, “some providers withhold information from older adults out of some archaic and ageist notion that they can’t handle the truth.”
If physicians are candid, patients can then set their own priorities. Some will want to hold onto life for as long as possible; others may fear pain more than they fear death. For still others, living long enough to see a grandchild born might be paramount.
In the end, Berman argues:
It doesn’t matter if care is cutting edge and technologically advanced; if it doesn’t take the patient’s goals into account, it may not be worth doing.
The Costs of Aggressive Care
Because our health care system is programed to battle cancer with every weapon at our disposal, “the societal costs range from poor quality of life and poor outcomes to untenably high costs.” Thanks to aggressive treatment, Berman notes, “the cost of cancer care has been on a steep incline rising faster than many other areas of health care. Over a six-year period starting in 2004, cancer care spending increased from $72 billion to $125 billion. And it is projected to reach $173 billion by 2020.”
The costs are “untenably high” not just when measured in dollars, but when measured in terms of human suffering. In the U.S., the phrase “breast cancer” terrifies most women because we assume that if the cancer cannot be cured, we are condemned to a prolonged, agonizing death. But as Amy’s story demonstrates, even in the last stages of the disease, this does not have to be the case.
In an essay titled “Letting Go: What Medicine Should Do When It Can’t Save Your Life,” Dr. Atul Gawande explains what is wrong with what I will call Extreme Medicine:
“The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And, in a war that you cannot win, you don’t want a general who fights to the point of total annihilation. You don’t want Custer. You want Robert E. Lee, someone who knew how to fight for territory when he could and how to surrender when he couldn’t, someone who understood that the damage is greatest if all you do is fight to the bitter end.”
This brings me to a final question: What makes the American way of dying so difficult? It is not just our fear of vanishing from the face of the earth. Somewhere, deep down inside, we believe death represents a failure. Someone did something wrong. The patient didn’t take care of herself. The doctor failed to prescribe the right treatment. Society does not invest enough in cancer research.
In some irrational way, we believe that death is a mistake, that everything can be treated. Some would call this “American optimism.”
Others would call it cruel.
Editor's Note: This is the latest in a 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:
Stunning New IOM Report Reframes How We View Cancer
Expecting Great Beginnings—and Endings
Transparency and the Teachable Moment
The Essential (Before I Kick the) Bucket List
Health Affairs Focuses on Cancer
Think Silver-Not Pink-for Breast Cancer Awareness Month