Renewing the call for a national Cancer Patient’s Bill of Rights

Excessive waiting for appointments, for treatments to begin and for phone calls to be returned; a lack of coordination among multiple providers; unclear answers on prognoses; and daunting financial challenges. Cancer patients and their loved ones already face enormous challenges wrangling with a vicious disease. Add to that a feeling of being trapped in a health care system that can be unresponsive to their needs, it can get truly overwhelming. That’s why Dr. Leonard Berry and co-authors wrote a Cancer Patient’s Bill of Rights.

“Patients and their families are so vulnerable when cancer strikes,” said Berry, distinguished professor of marketing at Texas A&M University’s Mays Business School and an expert in health care service. “They need to make crucial decisions while dealing with a complex, serious disease and emotional upheaval and few will know what rights that they have, what truly excellent oncology service is supposed to look like.”

In 2024, approximately 2 million Americans were diagnosed with cancer. “For many of them, no other service they will ever use will be more important than cancer care,” Berry said. “In the U.S., we have been more successful in improving the clinical part of cancer care than we have been in improving the patient and family experience, i.e., the service part of cancer care.”

A major study by the Institute of Medicine (IOM) in 1999 found many shortcomings in the service quality of cancer care; the IOM repeated the study in 2013 with similar or worse results.

“Progress made since 2013 is housed in select, well-led, progressive cancer practices but service improvement on an aggregate basis is incremental, at best,” Berry said.

In 2021, the state of California adopted the California Cancer Patients Bill of Rights to “make clear the Legislature supports the best cancer care for cancer patients in the state.”

Berry said a national bill of rights for cancer patients — if well-publicized and incentivized — would “greatly accelerate the service improvement we need in oncology.”

The Cancer Patient’s Bill of Rights

Berry and co-authors identified the following 10 principles for the Cancer Patient’s Bill of Rights:

1. Risk reduction
   Patients have the right to be educated about opportunities to reduce cancer risk, to be screened to detect cancer early, and to be appropriately counseled on the basis of the findings and the best available evidence.
2. Diagnosis
   Patients with suspected cancer have the right to timely access to trained subspecialists, to rapid diagnostic testing, and to accurate interpretations of their test results that are shared with all relevant clinicians.
3. Multidisciplinary expertise
   Patients diagnosed with a cancer for which treatment planning may benefit from multidisciplinary discussion have the right to receive such a service.
4. Treatment
   Patients have the right to balanced information about treatment options, provided in understandable language, that takes into account their priorities and values. Patients have the right to have all of their questions answered, including candid and ongoing assessment of their prognosis. Patients have the right to receive up-to-date information about, and have access to, relevant clinical trials.
5. Second opinion
   Patients have the right to seek a second opinion at any time in their cancer course.
6. Coordinated care
   Patients have the right to have all testing and treatments provided in a timely and coordinated manner.
7. Communication
   Patients have the right to read communications among the people who provide their care.
8. Supportive and ancillary services
   Patients have the right to supportive and ancillary services that address cancer-related health issues (emotional sequelae [such as PTSD], pain, symptoms, adverse effects) and personal issues (financial management, caregiving support). Patients have the right to counseling and other services to help them transition from active treatment to follow-up care.
9. Privacy
   Patients have the right to expect that their privacy will be safeguarded by all members of the treatment team and by ancillary staff.
10. Follow-up care
    Patients have the right to receive a treatment summary at the end of therapy that explicitly describes how their cancer will be observed, what signs or symptoms to look for, and whom to contact as needs arise.

Hopes For Service Improvement

Although states could model legislation after California’s, Berry said the most practical way to implement a national Cancer Patient’s Bill of Rights is for the leading cancer professional society, The American Society of Clinical Oncology (ASCO), to take the lead.

“They have the credibility and reputation, access to the thousands of cancer clinicians who are members, the journals they publish, and a mission of advocacy for improved cancer care,” he said. “We stress in our paper that our proposed bill of rights is a starting point for discussion and refinement, a starting point for a much larger effort. ASCO is well-positioned to lead this effort and could begin immediately. Perhaps that would have happened had our paper not been published right at the start of the pandemic, which understandably changed the priorities for all of health care.”

Berry says his team’s contribution serves as a roadmap for inspiring clinical practices to improve, and for patients and families to know what kind and level of services they have a right to receive.

This month, Mayo Clinic Proceedings included Berry as part of its “Pioneers and Legends in Medicine” series.

“We know our 10 principles are aspirational; we know there will be naysayers who view this bill of rights as unrealistic,” Berry said. “But cancer is evil, and we can — and must — do much better in serving the millions of people impacted by this dreaded disease.”

By Lesley Henton, Texas A&M University Division of Marketing and Communications

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