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.”
Our War on Cancer
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 has 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 way, 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 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,” she recalled. “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,” she wrote. “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.”
“Getting As Many Pulsations as Possible Into the Moment”
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.”
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, note 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 Hartford Foundation webisite I found sererall 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 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 “qualify 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 populationis 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 6 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 case. 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,” Berman observes.“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 programmed 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 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 in, 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.
I will post to Angry Bear
Run– thanks very much
Maggie, have you heard of the Andi Sloan case? This young woman has stage IV ovarian cancer, and led a very public battle to get BioMarin to let her have an experimental treatment under Compassionate Use. The FDA signed off on it, but BioMarin refused to release the drug to her, citing “ethical concerns.”
This case is the antithesis of Amy Berman’s approach. Given the young age of Andi Sloan, I can understand her desire for a cure. However, I’ve seen a lot of petitions for patients like Andi on Change.org and I’m getting concerned. Big Pharma has such a terrible history of manipulating research results to make drugs appear better than they are, and I see a wave of patients demanding unrestricted access to drugs that probably don’t work any better than what we have now.
No, I haven’t heard of the case. But it sounds like BioMarin is doing the right thing.
To give her the drug would be to encourage false hope. I completely understand her wish to fight to the end,
but too often patients suffering from late-stage cancer are so frightened that they feel that Someone Must Do Something Now!
As you say, Pharma’s campaign to exaggerate the benefits of new treatments– and hide the risks and side-effect– only hurts patients. We all need to come to terms with the fact that each of us will die. This is very hard to do when you’re young; as you get older, it becomes easier.
What this young women needs is not a place in an experimental trial, but a palliative care specialist who can help her
accept the fact that there is no cure for her disease.
Finally, that place in an experimental trial might better be given to a healthier patient who will live to the end of the trial. The larger purpose of the trial is to collect information that in the future may help other patients (and if those in the trial are not helped by the drug.) Patients who die before the trial are not able to contribute to that larger goal.
Maggie, thank you for this moving, thought-provoking piece. Both Amy’s story and the broader context you (and she) provide have helped me to see more choices than I had previously considered. Fine work!
Thank you very much.
I’m assuming you are a cancer patient. And, yes you do have many choices.
Please read “A Very Open Letter from an Oncologist” on this website. When talking to a patient whose cancer is not responding to first-line therapy, this oncologist does not automatically recommend chemo. Instead he is very honest with the patient, telling him or her ““I know that I can make you sick, but I am not certain that I can make you better! . . . In the foreshortened time that you have left, you need to think about what you want to do. Do you want to spend that time in this office, with me and my staff, or is there someplace else you would like to be, something else that you would like to do?” – See more at: https://healthbeatblog.com/2009/01/a-very-open-letter-from-an-oncologist/#sthash.EwZdTmIP.dpuf
In this letter he also is very candid in explaining the economic incentives which encourage doctors to continue chemo even when they know it will not save the patient.
You also might like “Our Fear of Cancer”. In that post I write about an exceptional essay that appeared in the medical journal Lancet. It suggests that our fear of cancer can be worse than the disease itself. https://healthbeatblog.com/2010/04/our-fear-of-cancer/
Finally if you have been diagnosed with cancer, I urge you to find a good palliative care specialist now. As I try to explain in this post, palliative care is not designed to be simply end-of-life care. It is care for anyone who is seriously ill and may or may not die of the disease. Palliative care specialists are very, very good at managing pain. It’s an art: the goal is to keep you comfortable but also awake and able to enjoy talking to relatives and friends. Most medical schools don’t stress pain management.
Finally, palliative care specialists are very comfortable talking candidly to patients about subjects that many doctor avoid: the uncertainties of the disease; how much time they may or may not have left; what to expect at the end of life; and most importantly, what the patient himself really wants. (Not what his family wants..)
Ideally a cancer patient would find a palliative care specialist when he is first diagnosed. (The palliative care specialist will also spend time with the family, helping them to understand that ultimately, it’s up to the patient to decide what he wants and needs–and how they can best support him.
A very good article; thanks for posting. However, there are some problems. The data is not so clear that she would have longevity if she had chosen aggressive treatment. Perhaps she would have some more time, but to call it longevity is quite an exaggeration. It is also that she is engaging in treatment, though much more mild that what was suggested. It’s great that you clarify the difference between palliative care and hospice.
A great many patients who undergo aggressive treatment believe that it will may well give them many additional years of life.
Most cancer patients are over 65- for a 70-year old, another 6 or 7 years counts as “longevity”. Many oncologists don’t specify how much more time the treatment might buy.
Also, if you look at a dictionary you will find that “longevity” doesn’t necessarily mean “long life”; it also means simply
“the length or duration of life.”
Regarding “treatment” — the hormone therapy that she is using is not considered “aggressive treatment”.
Finally, one point I didn’t include is that some research shows that when a patient chooses palliative care he or she may live somewhat longer than the patient who chooses aggressive treatment. This is in part because palliative care reduces stress. Pain is stressful.
You will probably be encouraged by HC trends manifest by the initial accounts of deductibles/patient pay/copay going up with the policies thus far announced on the non governmental, non employment based insurance market. The natural result of this will be to increase the awareness of medical care costs in general and medication costs in particular. Since chemotherapy costs tend to be the most impressive by far, with state of the art or ‘bleeding edge’ treatments running in the thousands per single treatment and tens of thousands for a 2 to 6 week cycle, copays on these treatments even at the 5-10% level will be prohibitive, and at the 20% level beyond the reach of 95%++ of the population.
Thus palliative care may be recommended more in the
future since chemo is so expensive. That is why so many are concerned about IPAB, as they may at some
point say that cancer is palliatively treated above a certain age, and after ~2020, there will be little recourse
from these decisions. Ditto such diseases as autoimmune disorders and MS, and copays may start
limiting dialysis accessibility at some point.
Thanks for commenting. I plan to write about these private Exchanges soon, and would like to know as much as possible about them.
Could you send me a link to info on co-pays and deductibles in these exchanges? I would appreciate it very much.
Turning to what you say about IPAB: under the Affordable Care ACt IPAB IS specifically not allowed to reduce beneifits or ration care in any way.
It could, however, reduce that amount that Medicare pays for chemo, forcing drug-makers to lower prices–or lose their biggest market (medicare and Medicaid)
What the conservative fear-mongers don’t tell you is that
Rationing by age would be illegal
No country in Western Europe rations by age, and our new system will be similar to theirs’ in many ways.
Only in the U.K. are their age cut-offs, and it has a single-payer system. Funding was sliced when Thatcher was prime miniister. (One thing I don’t like about single-payer is that if the government changes a new conservative administration could have too
much power. And patients would have no alternatives. I would great prefer to six a mix of non-profit insurers competing with a public option (a government run plan.) But I don’t want it to be the only game in town. Too dangerous. You never know who the American people may elect . . .
In addition IPAB kicks in only if growth in Medicare spending rises. Over the past few years, that growth has been falling.
The fact that IPAB exists serves to remind providers and others that if costs rise, IPAB may intervene. This is one reason why I expect that growth in Medicare spending (and private health care spending) will continue to flatten.
As you say, people are becoming more mindful of costs– and waste. Hospitals and others know that they have to become more efficient.
Finally, Palliative care is not cheap– it is extremely labor-intensive whether you receive it in the hospital or in your home.
And research shows that people who receive palliative care often live longer than people who receive chemo. (Probably because they are not as stressed. Pain and the side-effects of
chemo are stressful– especially for older people.
Great post, Maggie! Quality of life is indeed more important than how long we actually live. And Amy is such a brave woman for focusing on what she wanted, and going for it. That Walter Pater quote is absolutely apt for this case.
I agree, Amy is extremely brave–and, I think, wise.