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Against the odds - A band of rebels fights to save health care

Special Report

the odds

A band of rebels fights to save health care

Manali Patel

Manali Patel, MD, had dark circles under her eyes after a rough week battling tumors at the Stanford Cancer Institute. Patel, 33, doe-eyed and 99 pounds soaking wet, looked more like a college freshman than an oncology fellow six years out of medical school. Lately, she had seen a lot of bad endings. Several patients who wanted to die at home said their last goodbyes from a hospital bed, tethered to machines with tubes and wires. Another patient was referred to the hospital without knowing why. It was Patel's job to deliver the grim news: He had incurable lung cancer and only a few months to live.

Then, as she hung up her white coat for the day, she received the worst call of her life – her mother had breast cancer.

This began Patel’s journey down the patient side of cancer treatment, away from the traditional career path of a working doctor. She joined a small, idealistic band of physicians, engineers and management scientists with an ambitious goal – to battle the waste and perverse financial incentives in America’s increasingly unaffordable medical system.

Her mother’s call also brought a personal urgency to a nagging problem that is easy to ignore while working 80-hour weeks and managing the treatments of 100 or so cancer patients a month: Few oncologists have the time to talk to cancer patients anymore.

Less than a third of oncologists have end-of-life discussions with terminal cancer patients. As a result, cancer patients are left out of the decisions that determine how and where they spend their last days. Recent studies show that when cancer patients understand the big picture — treatment side effects, survival odds and pain-relief options – they live longer and enjoy a better quality of life.

Listening to her mother’s voice over a bad cell phone connection 3,000 miles away, Patel realized that her mother was about to be rushed off to chemotherapy.

“Wait. We need to talk first,” said Patel, as she started to formulate her plans to try to bring compassion and affordability back into cancer care, for mother and country.

Patel grew up with her parents and two siblings in Shelby, N.C., the rural Appalachian town where The Hunger Games was filmed. Her parents, who emigrated from India in 1973, worked hard to give their three children a good education in a community of primarily cotton farmers and textile workers. Patel’s mother held two jobs and her father ran his own textile design company. They bought only books, never toys, for the children. And ultimately, all three were accepted into a competitive science high school near Duke University and the University of North Carolina’s medical school.

Around town, Patel’s mother is known as “Mrs. Patel with the long hair,” because of the long, dark braid that comes down to her knees. Though Patel and her mother look very much alike – petite with caramel-colored skin ‐ their cultural backgrounds are very different.

“My daughter is the protector of the family, aggressive and outspoken,” says Mrs. Patel, who asked that her first name not be used.

Patel’s mother, whose marriage was arranged by aunts and uncles in Gujarat, India, was raised to follow elders’ and doctors’ orders without question.

When Mrs. Patel’s local physician first diagnosed her with cancer, he immediately sent her to a local oncologist for chemotherapy. “Once my doctor said the word ‘cancer’ I started crying and heard nothing,” says Mrs. Patel. “I thought it was the end of the world.”

Patel, the daughter-oncologist, was upset that her mother hadn’t gotten a second opinion. She told her mother to put everything on hold until she could talk to a breast cancer specialist at Stanford. And, for the first time, she experienced “the cancer talk” from the other side of a physician’s desk.

“This Stanford breast cancer specialist, who had never met me, called me back at 10 p.m. that same day,” says Patel. “He spent an hour on the phone with me, reassuring me, telling me what I needed to know about my mother's cancer and teaching me how to be her caregiver.”

Patel flew her mother out to meet with the Stanford specialist, who then spent two hours with her mother discussing her condition and wishes. The deciding factor in her mother’s treatment plan came at the very end of the meeting: “My mother said she didn’t want chemotherapy because she didn’t want her hair to fall out,” says Patel. “Back in India, her family had a tradition of never cutting hair. None of her American children had realized that this was so important to her.”

Instead of chemotherapy, Patel’s mother was given six weeks of daily radiation, followed by a five-year course of a non-chemo drug that doesn’t cause hair loss.

“Going through this with my mother made me a better doctor. And it made me realize that these cancer discussions take time,” says Patel.

Though she worried about whether her mother had made the right choice, she realized the importance of letting this be her mother’s well-informed decision, not hers.

As she finished her oncology training, she decided to take action on what she had learned. So she hit “pause” on that $380,000 median oncologist’s salary, buying a house and starting a family. Instead, she joined the Clinical Excellence Research Center at the Stanford School of Medicine.

Leap of faith

The CERC is led by Arnold Milstein, MD, the center’s director and a professor of medicine. The 2-year-old center’s mission is to find more affordable ways to deliver better medical care to the sickest of our population who consume the bulk of the country’s health-care spending.

The CERC team takes aim at the unintentional wastefulness of the U.S. medical system, which is by far the most expensive in the world, yet is ranked 37th in quality of care. In Milstein’s opinion – forged after 25 years as a health-care advisor to Fortune 100 companies, three White House administrations and Congress – there is no quick fix. Our country needs to safely improve the value of its health-care system by at least 2.5 percent per year, every year, in order to align health spending with national income growth. Anything less means more uninsured people, higher taxes and, eventually, fiscal Armageddon.

Milstein, a soft-spoken Midwesterner with a fondness for corduroy jackets, is building a pipeline for creating and testing innovative health-care delivery methods.

As she finished her oncology training, she decided to take action on what she had learned. So she hit ‘pause’ on that $380,000 median oncologist’s salary, buying a house and starting a family.

“To anchor our process, we recruit very smart postdoctoral and master’s-level research fellows with a history of fresh thinking and successful doing,” says Milstein. “We expose them to successful health-care innovators, pair them with Stanford faculty and Silicon Valley mentors to formulate better health-care models, then recruit health-care organizations and insurers to test the effectiveness of their concepts.”

Over the years, Milstein has won a number of epic battles in health-care redesign. He co-founded the Leapfrog Group, which defined hospital patient safety goals that became the de facto standard across the nation. He was the force behind Congress’ decision to stop paying hospitals for the cost of treating preventable patient complications. He launched an outpatient care delivery model for medically frail patients, called the “ambulatory-care ICU,” which improved health and lowered annual per-patient spending by more than 15 percent. And he’s the founding medical director of the Pacific Business Group on Health, the nation’s largest regional health-care improvement coalition of large employers, whose members include Chevron, Safeway, Walmart, Boeing, HP, Cisco, Facebook, CalPERS and Stanford University.

For the fellows’ first year, Milstein targeted four of the most debilitating and expensive medical conditions in the U.S. system – chronic kidney disease, morbid obesity, colon cancer and poor-prognosis cancer, which was Patel's area of focus.

Photo by Jamie Kripke The Clinical Excellence Research Center's fellows and Terry Platchek, fellowship director.
The Clinical Excellence Research Center’s fellows and Terry Platchek, fellowship director. From left: Sarah Adler, Graham Abra, Manali Patel, Platchek, David Moore and Sundeep Singh.

Though the fellows have diverse backgrounds, all have had personal experiences that have motivated them to join this small group of reformers.

For example, Graham Abra, MD, a nephrology fellow, was curious about why some medical institutions provide better patient care than others, and whether innovative approaches could make health care more affordable. Psychologist Sarah Adler, PsyD, became interested in obesity after researching the mental health underpinnings that may contribute to overeating. Sundeep Singh, MD, a gastroenterology fellow with a bachelor’s degree in industrial and systems engineering, sought to develop systems-based solutions to health-care delivery. Kimberly Stone, MD, a surgery resident, wanted to see if making low-cost bariatric surgery more widely available might extend life for morbidly obese patients. And David Moore, PhD, an industrial engineer and consultant, became interested in the redesign of health services after working on a system to improve efficiency in surgical suites.

Abra, who worked on the chronic kidney disease and cancer care models, spoke about his first impressions: “It was pretty risky signing up for a new type of fellowship program. There’s this professor with the crazy idea that better health care can cost much less. But he was giving us a chance to fix the medical system at a higher level. So I joined.” And he adds with a smile, “It was a leap of faith.”

Valley of despair

The team got to work in August 2011 with a month-long “Innovation Bootcamp.” It started with almost 50 briefings by eminent health-care economists, biostatisticians, futurists, clinical specialists, faculty, information technology experts, human factors gurus and behavioral scientists. They also met with leaders from efficient health systems, such as the Permanente Medical Group in California, ThedaCare in Wisconsin, Intermountain Healthcare in Utah, and government-run health systems in British Columbia and Sweden.

“I was star-struck, and I even felt a little guilty about how many top national experts met with the six of us,” says Patel.

Optimism was high among the fellows as they began their clinical research and observations. To help structure their search for solutions, the center adapted the Stanford Biodesign Program innovation methodology, which has spawned more than 300 patents and 26 medical technology companies. This training teaches inventors to identify the most pressing unmet needs within a medical system, so that the resulting solutions improve clinical outcomes and save money. The team spent two months immersed in clinical settings, observing patients, families and physicians. They interviewed care delivery innovators in the United States, Canada, Sweden and other countries. And they gathered new ideas from scientific literature and medical experts.

Fast forward two months: It was almost 11 p.m., and the fellows were in a conference room cluttered with marker-scratched white boards, fast food carnage and stacks of studies. The fellows had fallen into the “valley of despair,” the ugly, chaotic middle of the innovation design process.

“We were all so exhausted and suffering from information overload,” says Patel. “That was the low point. We couldn’t imagine how we were going to make sense of everything we’d learned.”

That was where the Biodesign process helped – as well as its credo: “Given enough time, sugar and caffeine, you will invent something.”

At this stage of the project, the fellows had a list of about 200 unmet needs (a.k.a. problems to fix) for each target condition. The needs were entered into a database and ranked by characteristics such as importance to patients and clinicians, and potential cost savings. This helped the team narrow the best ideas to those that addressed the most critical “needs clusters.” Then, during the late winter and spring, Patel and the other fellows began assembling their care models, folding in feedback from faculty and mentors.

When Milstein reviewed the first round of care models, he was worried. He felt that some of the fellows had fallen prey to “anchoring bias,” the human tendency to fixate too early on one piece of information when making decisions.

“That’s where David Moore, our operations researcher, really helped the team,” says Milstein. “He created the economic and analytical framework for each of the care models, and in the case of Patel’s plan, the biggest cost-benefit in cancer care came from an unexpected line item – rapid symptom relief.”

Talk is cheap

The side effects of cancer treatments – pain, seizures, debilitating headaches and nausea – can easily overwhelm patients at night or during weekends, when oncologists are difficult to reach. Suffering patients often end up in crowded emergency rooms, waiting hours for relief. Sometimes they’re hospitalized overnight, waiting until the oncologists arrive the next morning, accruing thousands of dollars in unnecessary medical bills.

Patel’s model provides patients with 24-hour telephone access to nurses trained in cancer care. They guide patients’ use of symptom-control medications, pre-positioned at home or delivered within hours.

“Quick symptom relief is not only more humane, but it literally saves thousands of dollars per year for these cancer patients,” says Patel.

‘We were all so exhausted and suffering from information overload. That was the low point. We couldn’t imagine how we were going to make sense of everything we’d learned.’

Another component of her care model is providing patients with more convenient local access to chemotherapy infusions, giving patients with low-risk treatments the option of receiving the drugs at home, via home health nurses, or at nearby infusion centers, such as those operated by Walgreens across the country. These treatments would be monitored by experienced nurses and pharmacists, and remotely guided by expert oncologists. Patel discovered that this approach is already working well for the Nebraska Veterans Administration hospital.

Perhaps the most important aspect of her model is earlier cancer patient counseling, institutionalizing shared decision-making well before a patient is on the brink of death and emotions overwhelm the decision-making skills of patients, their families and clinicians.

According to a recent study, end-of-life discussions typically take place only 33 days before death. With Patel’s new cancer care model, patients would be thoroughly briefed on the survival odds and side effects before being rushed off to surgery or chemotherapy. Many months before the family is gathered around a loved one’s deathbed, a person’s final wishes – resuscitation, feeding tubes, assisted breathing and whether a person wants to die at home – would be well-informed and documented.

“Eighty percent of all cancer patients express a desire to die at home, yet only 10 percent do,” says Patel. “These conversations, which typically take two hours in the beginning and require many follow-on conversations, are too hard, time-consuming and draining for a busy oncologist to do well.”

These conversations would automatically occur whenever the probability of death is 30 percent or more within three years, based on oncology survival tables.

After months of scenario building and faculty critiques, the team’s care models crystallized for each of the four conditions, and three-year health spending reductions were projected.

Based on a conservative financial model, Patel estimated that her team’s new care model would lower the $123,000 annual per-capita health spending of poor prognosis cancer patients by 30 percent – even after paying for its new services.

The problem? Clinics, hospitals and insurers have to be convinced that paying for these additional services on the front end will pay off on the back end. And this was Patel's challenge as the academic year came to a close – to find partners willing to test her plan, so she could gather and publish evidence on effectiveness.

Finally, after 10 months Milstein and the other faculty decided that the fellows’ care models were ready for their first public airing.

The pitch

It was June, six days before the Supreme Court announced its ruling on whether the Affordable Care Act would stand. Patel and her colleagues were about to present their new care models to about 100 health benefit plan leaders of the Pacific Business Group on Health at its annual strategy retreat. The meeting was in a conference center, once a turn-of-the-century mansion, now landlocked in a sea of San Jose tract homes. The conference room walls were papered in easel notes from the previous day, filled with ideas on how to provide the best possible medical care to their employees in the face of escalating health-care costs.

Photo by Jamie Kripke Arnold Milstein The center’s leader, and advisor to government and industry.
Arnold Milstein The center’s leader, and advisor to government and industry.

Milstein introduced the Stanford fellows and summarized the writing on the wall: “The only way we’re going to bring per-capita health-care spending in line with revenue growth is to create a continuous flow of more efficient ways of delivering health care. Today, our research fellows will illustrate the first wave of Stanford-designed care models, and we ask that you to consider testing our ideas.”

Patel was second up in the presentation, a little nervous and barely tall enough to be seen behind the podium. She stated the problem in her target area: Cancer is the second-leading cause of death in the United States, with costs estimated to be $173 billion by 2020. These rising costs are unsustainable.

And what do many poor-prognosis cancer patients get for all the money spent? “Horrible treatment,” she said, citing a statistic that silenced the room: Seventy-three percent of terminal cancer patients never have an end-of-life discussion with their oncologists. “Many patients are rushed off to chemotherapy without understanding the big picture. And when predictable treatment side effects happen at night and on weekends, patients who are unable to reach their oncologist end up in misery in emergency rooms and hospitals. Later in their illness, many die painfully in intensive-care facilities that bankrupt their families emotionally – and sometimes financially.”

During her presentation, Patel’s eyes became dark pools that threatened to overflow. A few people in the audience wept silently, perhaps remembering loved ones who had similarly suffered.

“Overall, these added services improve the quality of life of patients, giving them what they need and want without delay,” she added after describing her model. “And best of all, we lower health insurance costs … simply by doing the right thing.”

Afterward, leaders from Disney, Tesla, Boeing and Safeway asked Milstein and the fellows for more details on implementing their models.

The following week, however, some of Patel’s conference calls to health-care providers and insurers didn’t go as well.

At a large clinic in the Midwest, the medical director said to Patel, “Our cancer center is one of the few areas where we’re profitable. Thanks just the same, but we’ll pass.”

A representative from a large national private health insurer said, “We can’t afford to alienate any more of our oncologists by lowering their income.”

Another health-care insurer in Seattle referred to her proposal, only half-jokingly, as a “death panel,” using the Tea Party’s misnomer for the counseling sessions on end-of-life cancer care and hospice that were to be reimbursed under the Affordable Care Act. This provision, which was misinterpreted as government committees encouraging seniors to forgo treatments to save money, was pulled from the act before it passed.

By the end of the second week of presentations, Patel was deflated. Her care model was dead last in attracting test sites, and she began to realize that a major flaw in her plan was that it threatened the livelihood of the plan’s most important participants – oncologists.

The near-term savings from her care model would come off the bottom-line revenues of oncology practices and cancer centers. Unlike other medical specialties, private-practice oncologists earn most of their money through selling drugs – 65 percent of total revenues come from drug sales and another 21 percent from fees associated with drug infusions, imaging and radiation services, according to the National Oncology Practice Benchmark 2011 Report published in the Journal of Oncology Practice.

This report goes on to show that only 8 percent of a typical private-practice oncologist’s earnings, strictly speaking, comes from “patient time,” the revenues earned through conversations about cancer, treatments, side effects, outcomes and end-of-life issues.

“Current incentives are often misaligned to reward doing the most aggressive and expensive actions, as long as patients are satisfied, because this leads to the highest return to the practice,” says Thomas J. Smith, director of palliative care at Johns Hopkins, in a 2010 article in Oncologist. “Some consequences include U.S. cancer treatment costs that are twice that of any other nation with no or minimal differences in survival, late referrals (if at all) to hospice, and 14 to 20 percent of patients receiving chemotherapy within 14 days of their death, when it is highly likely to harm and cause complications.”

Private-practice oncologists, on the other hand, argue that they are losing money because Medicare reimbursement rules don’t cover overhead costs for drug administration, inventory and bad debt. They understandably want to fight the erosion of their revenue base, which has fallen 33.5 percent in the last six years. But as the Affordable Care Act seeks to wean the medical system away from the fee-per-service structure, Patel hopes her model can be the bridge from the old compensation model to a new one, based on shared savings from more humane and effective treatments.

After the first two weeks of sales pitches, Milstein organized an expert panel to critique the fellows’ presentations, prepping them for more presentations over the summer. Milstein was joined by Rob Rebitzer, a CERC consultant and a former partner in Accenture's health-care consulting group. Together, they offered advice on speaking more simply and slowly, “like Mr. Rogers,” to certain groups. And they suggested clarifying that the substantial savings from each new care model would be shared by employers, physicians and patients within large health insurance groups.

For Patel’s plan, they recommended that criticism of oncology compensation structures be replaced with ideas on oncology profit-sharing incentives. And overall, Patel should stress the win-win aspects of her model – better care that saves the system money.

At the end of the session Milstein spoke from the heart to his fellows: “I know it’s difficult to offer advice to a room full of senior health-care professionals who are all older than you, but think back on all the knowledge that you’ve gained over the last year. And remember, you represent hope to these people.”

In the waiting room

By the end of July – after dozens of presentations on her advanced-cancer-care model, Patel got good and bad news. The good news was that five groups expressed interest in piloting her program. One large hospital in California agreed to test most of her new care model. A large employer agreed to offer financial incentives to fully implement her care model with a health system serving a large number of its employees. Three others were leaning toward implementation but had not given the final go-ahead.

The bad news: Patel’s mother came back to Stanford for a follow-up appointment with her oncologist to make sure her breast cancer hadn’t recurred. The mammogram showed no tumors, but the bone scan showed an anomaly, and now Patel and her mother were going through the tortuous process of waiting for results.

“My mother is my best friend,” says Patel. “I talk to her about everything. Except my worries about her cancer.”

Watching the compassionate handling of her mother’s case by the veteran Stanford breast cancer specialist forever changed Patel’s view of how physicians should talk to cancer patients and their families. It impressed her with the need for a calm, experienced, neutral coach to talk a patient through the life-changing experience of a cancer diagnosis. She realized that there are thousands of factors, seen and unseen, involved in cancer treatment decisions. And that an informed patient – with the support of friends, family, counselors and oncologists – needs to be at the center of those decisions. Now she wants to share what she’s learned with others.

Mrs. Patel recently spoke about how proud she is of her daughter: “Four years after my cancer, I’m still here. I thank my daughter for that. I can’t wait to see how she will make a difference in helping other cancer patients.”

As Patel sat in the waiting room with her mother, she mentally ran through worst-case scenarios of other cases she’s seen, and she worried. But she understood that her mother needed to be able to make these decisions on her own.

Then Patel was handed her mother’s bone scan report. She looked it over and breathed a sigh of relief. It was clear. And at that moment, she took off her white coat and tried to simply be a supportive daughter.

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