‘Bill of Rights’ would emphasize people with cancer have a ‘voice’ in their care
Key takeaways:
- Individuals with cancer have the right to be informed about and take part in their care.
- Timely, coordinated and multidisciplinary care are key parts of a proposed “Bill of Rights” for patients with cancer.
Joseph O. Jacobson, MD, MSc, teaches fellows that patients with cancer can suffer in three different ways.
The first comes from the disease.
“That, first and foremost, is what we’re there to address,” Jacobson, senior advisor for quality and patient safety at Dana-Farber Cancer Institute, told Healio.
The second comes from the treatments themselves and the adverse events they cause. Billions of dollars are spent every year to develop new therapies — or improve existing ones — to minimize toxicity.
The final category, however, does not require fortune to fix. Just attention.
“The third area is suffering related to our systems,” Jacobson said. “It’s inexcusable that our patients should be suffering anything related to failures in the way that we’re delivering care. I think of that kind of suffering as being potentially preventable and our responsibility.”
In 2020, Jacobson and colleagues published a paper in JCO Oncology Practice proposing a “Cancer Patient’s Bill of Rights.”
The authors detailed 10 principles patients should understand when they are diagnosed with cancer, such as the right to multidisciplinary care and a second opinion.
Five years later, that Bill of Rights seems as necessary as ever.
“A cancer diagnosis is life-changing, even if it is not life-ending,” paper co-author Leonard L. Berry, PhD, University Distinguished Professor of Marketing and M.B. Zale Chair in Retailing and Marketing Leadership at Mays Business School at Texas A&M University, told Healio.
“It creates tremendous emotional upheaval in the families that are struck by cancer,” he added. “We can, and we must, do much better in serving the millions of people impacted by this — not just in terms of our clinical expertise, but in terms of caring for their emotions, caring for their well-being and their family’s well-being.”
‘Little progress’ in ‘patient experience’
Berry does not have a background one might expect to lead such a cause. Jacobson felt the same way when he met him.
They first connected in 2015 at a lecture in Boston. Berry, a fellow at Institute for Healthcare Improvement at the time, had been invited to speak about implementing large-scale projects in health care.
Organizers asked Jacobson to provide reflection.
“I understood at the beginning of the talk that he was a marketing professor at Texas A&M,” Jacobson said. “I really thought it was unlikely that he was going to be able to connect with me in the audience as an academic medical oncologist. But the opposite was true.
“Len spoke from the perspective of a patient, having interviewed patients around the country and interviewed clinicians and cancer center directors. He also studied at a hospice. He brought great empathy to the lecture and explained ways that we could do a better job as cancer providers in being truly available to our patients. It was pretty humbling to me.”
Berry and Jacobson collaborated on multiple publications afterward, and they eventually came up with the idea of a Bill of Rights for patients with cancer.
“You’re reading about clinical developments every single day, but we’ve made very little progress in terms of the patient experience,” Berry said.
‘Aspirational list’
The Bill of Rights outlines rights patients should have regarding risk reduction, diagnosis, multidisciplinary expertise, treatment, second opinions, coordinated care, communication, supportive and ancillary services, privacy and follow-up care.
“This is an aspirational list,” Berry said, also describing it as a “starting point.”
Both Jacobson and Berry detailed experiences with patients who did not understand they could be a part of their own care plan.
“Patients I interviewed would not have any idea they should be getting some of these services,” Berry said. “If I [said], ‘Maybe you should get a second opinion,’ they would say something like, ‘I’m afraid I’ll offend my doctor if I ask for a second opinion.’ [If I asked], ‘Why are you getting this treatment?’ [They would say], ‘My doctor decided on it.’”
Based on his experience, including a research year at Mayo Clinic, Berry highlighted coordinated care, multidisciplinary expertise, and balanced and easily understandable information about treatment as “critically important” to the Bill of Rights.
Jacobson emphasized the importance of timely care as well as coordinated care. He also realized he and his fellow authors left out a vital word in their publication — safety.
“We not only assure high-quality care, but we go to all possible effort to make care as safe as possible,” Jacobson said. “We did note that this needed to be a living document. We knew we hadn’t gotten it right on our first pass, and the goal was to stimulate the discussion.”
‘It should be intuitive’
Progress has been made since Berry and colleagues published the paper.
In 2021, California adopted its own Bill of Rights for individuals with cancer.
It has six components.
It outlines patients’ rights to understanding of diagnoses and treatment options, as well as access to transparent and timely care.
It also emphasizes their rights to get additional care outside of one oncologist, as well as to receive palliative care, benefit from multidisciplinary expertise, and participate in clinical trials.
Additionally, patient-centered care has become a greater emphasis for many in health care.
“For the most part, organizations are set up to engage the patient as a member of the team, much more so than when I trained,” Jacobson said.
Berry and colleagues had hoped ASCO would spearhead the charge for a Bill of Rights — and they still do.
“It’s the most well-known, most influential oncology professional society in the entire world,” Berry said. “It is the group to pick the ball up and run with it.”
ASCO officials declined to comment for this story.
It only takes one person in the right position to give the idea life, Berry said.
“I’m cautiously optimistic we can make more than just some progress [in the next 5 years],” he added.
An actual Bill of Rights might not be necessary to move the needle further, though.
In the paper, Berry and colleagues wrote, “Each of us is keenly aware of the difference between a well-prepared, well-navigated and empowered patient with cancer and a less fortunate one — not just in the care experience, but often in outcome.”
“Dana-Farber Cancer Institute has a main campus, which tends to attract patients who are reasonably affluent [and] well-educated,” Jacobson said. “They often come to us for a second or third opinion because they have a diagnosis, and they’re trying to get the very best guidance they can get.
“But we have a community practice, [too],” Jacobson added. “About 40% of our care is given in a series of network clinics, and there we commonly see patients for whom English is not their first language, many of whom are on state-sponsored health insurance plans. They’re often less informed about their rights. I worry that it’s not a level playing field across even our institution, despite all our efforts to assure equity and access to patient-centered care.”
“Patients need to understand they have a voice,” Jacobson said. “They have the right to ask questions. They have the right to feel like they’re part of the cancer care team rather than the recipient of care handed down paternalistically.
“We shouldn’t need a patient Bill of Rights,” he added. “It should be intuitive, and systems should be built to assure that patients feel safe [and] nurtured in the environment.”
References:
- Jacobson JO, et al. JCO Oncol Pract. 2020;doi:10.1200/JOP.19.00705.
- Protecting the rights of cancer patients. https://med.stanford.edu/cancer/about/news/patient-rights.html. Published December 2023. Accessed March 13, 2025.
- Renewing the call for a national Cancer Patient’s Bill Of Rights. https://today.tamu.edu/2025/02/12/renewing-the-call-for-a-national-cancer-patients-bill-of-rights/. Published Feb. 12, 2025. Accessed March 13, 2025.
For more information:
Leonard L. Berry, PhD, can be reached at lberry@mays.tamu.edu.
Joseph O. Jacobson, MD, MSc, can be reached at joseph_jacobson@dfci.harvard.edu.
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Renewing the call for a national Cancer Patient’s Bill Of Rights. https://stories.tamu.edu/news/2025/02/12/renewing-the-call-for-a-national-cancer-patients-bill-of-rights. Published Feb. 12, 2025. Accessed March 25, 2025.
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