The growing demand for cancer care, combined with increasingly complex treatments, a shrinking workforce and rising costs, now constitutes “a crisis” for the field, according to a new report from the Institute of Medicine (IOM).

Although the IOM report cited many deficiencies, one statement summed up its key conclusions: “[Cancer] care often is not patient-centered; many patients do not receive palliative care to manage their symptoms and side effects from treatment; and decisions about care often are not based on the latest scientific evidence,” the report stated.

Matthew Farber, the director of provider economics and public policy at the Association of Community Cancer Centers (ACCC), commented that “none of the problems or solutions listed in the report are incredibly shocking,” but the study nevertheless “is a call to arms.”

The report proposes a conceptual framework for making improvements, outlines 10 goals and issues several recommendations (Table). Tom Smith, MD, one of the report’s authors, and an oncologist and the director of palliative care at John Hopkins’ Sidney Kimmel Comprehensive Cancer Center in Baltimore, said the following recommendations may make the most impact: that patients have written care plans; that clinicians provide detailed information to patients about benefits, risks and costs of treatment; and that any seriously ill patient has access to palliative care alongside usual oncology care.

Table. IOM Cancer Care Goals
Provide patients with understandable information on cancer prognosis, treatment benefits and harms, palliative care, psychosocial support and estimates of total and out-of-pocket costs.
Provide end-of-life care consistent with patients’ needs, values and preferences.
Ensure members of the cancer care team coordinate with one another and with primary/geriatric and specialist care teams to implement patient care plans and deliver comprehensive, efficient and patient-centered care.
Ensure the cancer care team has core competencies.
Expand breadth of cancer research data collected on cancer interventions for older adults and individuals with multiple comorbid conditions.
Expand the depth of data available for assessing interventions.
Develop an ethically sound health care information technology system that can “learn” by enabling real-time analysis of data from cancer patients in a variety of care settings.
Develop a national quality-reporting program for cancer care as part of a learning health care system.
Reduce disparities in access to cancer care among vulnerable and underserved populations.
Improve the affordability of cancer care by leveraging existing efforts to reform payment and eliminate waste.

“Palliative care is the home run of American medicine,” Dr. Smith said. “First, people have better symptom management and quality of life. Second, people have fewer hospital days and hospitalizations at the end of life. Third base is people live at least as long, if not longer, with both hospice and palliative care. And fourth, it is care that we can actually afford.”

Removing reimbursement barriers to team-based care also is sorely needed, the IOM report noted. Some insurance companies do not pay for a patient to see more than one physician per day, when oftentimes the ideal is to meet with a team of caregivers. Dr. Smith said new care models may remedy this, including bundled payments, accountable care organizations and oncology patient-centered medical homes.

To align clinical trial populations with those most commonly seen in a community clinic, the IOM recommends rewarding companies with a six-month patent extension when they conduct drug trials in older patients or individuals with multiple comorbidities. This is a tool used to encourage trials in pediatric populations.

Another important recommendation is for payers to implement payment models that incentivize discussions about clinical options, cost of care and end-of-life care issues. Robert Arnold, MD, the chief of palliative care and medical ethics at the University of Pittsburgh School of Medicine, says physicians who have end-of-life care discussions currently bill their time under general counseling Current Procedural Terminology, or CPT, codes. He thinks having specific CPT codes for an end-of-life conversation will help. “It’s an uncomfortable conversation and it’s a financial loser, so everything is against it,” Dr. Arnold said. “I think if you tell doctors we support it [by having a specific code], the symbolism is really important. It says, ‘this is something from a societal point of view that we want you to do.’”

According to Virginia Vaitones, MSW, the president of the ACCC, educating patients about all aspects of chemotherapy treatment takes at least an hour. It is not reimbursable if undertaken by nurses and only partially reimbursable when done by doctors. She thinks having more thorough discussions up front will save money in the long run, and she sees the new codes coming to fruition within the next five years. A precedent for having specialized consultation codes has been set—an existing diabetes management code can be used as an example.

Many clinicians hope the report’s focus on patient-centered care will encourage research in this area. Current clinical trials are rarely designed to provide information to a patient who is going to live with treatment-related side effects and long-term sequelae. “The older oncology literature is really focused on things like survival and recurrence,” said Benjamin Smith, MD, an oncologist at University of Texas MD Anderson Cancer Center in Houston. “Those are helpful, but they don’t tell the whole story of the way a patient experiences an illness.”

Dr. Smith, who also is a health services researcher, believes the IOM report will make waves. “I think IOM reports carry quite a bit of weight,” he said. As evidence, he pointed to a 1999 IOM report that concluded the gaps in cancer care need further study. “There has been a dramatic proliferation of cancer-related health services research between the time that report was published and the present day,” he said. “Given there is a historical precedent, I am hopeful that this IOM report will have an impact.”