Cancer treatment has grown so complex, many U.S. doctors can't keep up with new information and are offering incorrect treatment, failing to explain options and leaving patients to coordinate their own care, according to a report released on Tuesday by the Institute of Medicine, part of the National Academy of Sciences.
The 315-page report, "Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis," identifies a long list of reasons for the crisis, including a growing demand for cancer care as more people receive a diagnosis and a shrinking oncology workforce.
"Probably on average the quality of care is not bad, but we know there are people who are not getting the (highest) standard of care," said Dr Patricia Ganz, who chaired the institute's panel that wrote the report and is a professor at the Schools of Medicine and Public Health, University of California, Los Angeles. "Patients need to be asking, Is my doctor giving me appropriate treatment?"
Treating the disease, which can require precisely matching a tumor's molecular characteristics to a drug, has become so complicated that many physicians lack "core competencies in caring for patients with cancer," the report concludes.
Groups such as the American Society of Clinical Oncology (ASCO) have developed scores of treatment guidelines for virtually every stage of nearly every kind of cancer. But clinicians' adoption of the guidelines is not widespread, finds the IOM. Some physicians believe their own experience trumps scientific evidence, others suspect their patients are different from the norm, and still others are simply unaware of treatment guidelines.
"When cancer patients understand that their local doctor in their community hospital doesn't have half the new knowledge about their particular subtype of cancer, well, 'gobsmacked' would pretty well describe it," said Clifton Leaf, a cancer survivor and journalist whose new book "The Truth in Small Doses: Why We're Losing the War on Cancer - and How to Win It" is critical of the cancer establishment.
Palliative care, goals unaddressed
Doctors are also falling short when it comes to simpler challenges. Too few oncologists know how to provide palliative care to keep patients comfortable when treatment has failed, or even how to make referrals to palliative-care consultants, the IOM found.
Patients can't even assume their doctors will communicate adequately. Many are failing to explain the pros and cons of treatment options, let alone asking patients about their preferences. Nor are they spelling out the goals of treatment or even what treatment patients have received and how it might affect their future health. Some chemo, for instance, raises the risk of heart disease.
Most physicians also seem unwilling to deliver hard truths: Up to 80 percent of cancer patients with poor prognoses incorrectly believed their treatment could result in a cure, the IOM found.
Responding to the criticisms, ASCO President Dr Clifford Hudis said, "I have no reason to doubt the accuracy of the IOM report," adding that "every person with cancer should receive state-of-the-art, high-quality and compassionate care.
"A large minority of oncology practices" have signed on to ASCO's program to improve the quality of care, he said. The initiative includes sending anonymized patient charts to ASCO experts, who tell the physician if they performed the correct tests - such as probing a lung cancer for a particular gene mutation - and offered the appropriate therapy. If they did not, that is flagged.
Studies show this quality-control program is working. "But there are still barriers to oncologists staying up to date" with the complexity of cancer care, said Hudis, a breast cancer specialist at Memorial Sloan-Kettering Cancer Center in New York, including finding time to travel to medical meetings and read scientific journals.
Many cancer patients know all too well that cancer care "is often fragmented and poorly coordinated," the report finds.
Jessie Gruman, a four-time cancer survivor who in 1992 founded the nonprofit, Washington, D.C.-based Center for Advancing Health, was recently diagnosed with stomach cancer. In one single year eight physicians, starting with her oncologist and surgeon, cared for her, and only once did two of them communicate directly with each other.
"Otherwise, I have been the sole arbiter of who gets what information and which test results from the others," Gruman wrote in an essay in "Health Affairs" earlier this year.
Just over 1.6 million new cancer cases are diagnosed each year in the United States; by 2030, 2.3 million will be as the population ages. That will present even more challenges, starting with too few oncologists and facilities to care for the rising number of patients: A report commissioned by ASCO concluded that the nation will be short 2,500 to 4,080 medical oncologists by 2020.
Most of the new cancer patients are elderly and suffering other illnesses, which means they tend to be weaker and thus less able to tolerate punishing therapy. Age also complicates treatment because few new chemotherapy drugs or other treatments have been tested in older patients; drug companies that sponsor these clinical trials prefer younger patients who don't have other diseases.
Sadly, said Ganz, little progress has been made since 1999, the last time the IOM examined the issue, in the quality of care cancer patients receive. That report's recommendations for implementing evidence-based care and making other changes, she said, "have had limited uptake."