Long waits for appointments, delays in starting treatments, and slow responses to phone inquiries; disorganized collaboration among various providers; ambiguous information regarding prognoses; and significant financial burdens. Individuals battling cancer and their families confront tremendous obstacles dealing with a brutal disease. When they also feel ensnared in a health care system that appears indifferent to their needs, it can truly become overwhelming. That’s the reason Dr. Leonard Berry and his co-authors formulated a Cancer Patient’s Bill of Rights.
“Patients and their families find themselves in a highly vulnerable state when cancer strikes,” stated Berry, a distinguished professor of marketing at Texas A&M University’s Mays Business School and a specialist in health care services. “They are faced with making critical decisions amidst the turmoil of a complicated and severe illness, along with emotional distress, and most will not be aware of their rights or the standards of exceptional oncology care.”
In 2024, around 2 million Americans received cancer diagnoses. “For many of those individuals, no other service they will ever use will be as vital as cancer care,” Berry remarked. “In the United States, we have been more adept at advancing the clinical aspects of cancer care than at enhancing the experience for patients and families, which is the service component of cancer care.”
A significant investigation conducted by the Institute of Medicine (IOM) in 1999 discovered numerous deficiencies in the quality of services within cancer care; the IOM replicated the study in 2013, revealing similar or even more alarming outcomes.
“Advancements made since 2013 are confined to select, well-managed, advanced cancer practices, yet overall service improvements remain minimal at best,” Berry indicated.
In 2021, the state of California enacted the California Cancer Patients Bill of Rights to “clearly demonstrate that the Legislature is in support of the highest quality cancer care for patients residing in the state.”
Berry stated that a nationwide bill of rights for cancer patients — if effectively communicated and encouraged — could “significantly expedite the service enhancements needed in oncology.”
The Cancer Patient’s Bill of Rights
Berry and his co-authors delineated the following ten principles for the Cancer Patient’s Bill of Rights:
- Risk mitigation
Patients have the right to be informed about strategies to lessen cancer risk, to undergo screenings for early detection, and receive appropriate counseling based on findings and the most reliable evidence available. - Diagnosis
Individuals suspected of having cancer have the right to timely access to qualified subspecialists, prompt diagnostic testing, and clear interpretation of their test outcomes shared with all pertinent clinicians. - Multidisciplinary expertise
Patients diagnosed with a cancer that may benefit from a collaborative treatment planning approach have the right to receive such a service. - Treatment
Patients are entitled to comprehensive information regarding treatment options, conveyed in understandable terms, considering their preferences and interests. They also have the right to have all inquiries addressed, including honest and ongoing evaluations of their prognosis. Furthermore, patients are entitled to receive current information about, and access to, relevant clinical trials. - Second opinion
Patients have the ability to seek a second opinion at any point during their cancer treatment journey. - Coordinated care
Patients have the right to all tests and treatments to be delivered promptly and in a well-coordinated fashion. - Communication
Patients have the right to review communications among those providing their care. - Supportive and ancillary services
Patients have the right to supportive and ancillary resources that address cancer-related health issues (emotional aftereffects [such as PTSD], pain, symptoms, side effects) and personal matters (financial management, caregiving assistance). Patients have the right to counseling and additional services to aid their transition from active treatment to follow-up care. - Privacy
Patients have the right to expect that their privacy will be protected by all members of the treatment team, including ancillary personnel. - Follow-up care
Patients have the right to receive a treatment summary at the conclusion of therapy that explicitly outlines how their cancer will be monitored, which signs or symptoms to observe, and whom to contact for any arising needs.
Aspirations for Service Development
Though states might model their legislation after California’s, Berry mentioned that the most pragmatic approach to realize a national Cancer Patient’s Bill of Rights would be for the paramount cancer professional organization, The American Society of Clinical Oncology (ASCO), to spearhead the initiative.
“They possess the credibility and reputation, access to thousands of cancer clinicians among their members, the journals they publish, and a mission dedicated to advocating for enhanced cancer care,” he expressed. “We emphasize in our paper that our proposed bill of rights is merely a starting point for discussion and refinement, laying the groundwork for a much broader endeavor. ASCO is ideally situated to lead this initiative and could commence immediately. Perhaps this could have occurred had our research not been published right as the pandemic started, understandably shifting the health care priorities.”
Berry states that his team’s contribution serves as a guide to inspire clinical practices to enhance, while also informing patients and families about the kind and level of services they are entitled to receive.
This month, Mayo Clinic Proceedings featured Berry in its “Pioneers and Legends in Medicine” series; he is the only non-physician to have ever received this accolade.
“We understand that our ten principles are aspirational; we are aware that there will be critics who consider this bill of rights as unrealistic,” Berry noted. “However, cancer is a wicked issue, and we can — and must — do significantly better in supporting the millions affected by this feared ailment.”
The article Renewing The Call For A National Cancer Patient’s Bill Of Rights appeared first on Texas A&M Today.