CancerCare® Publishes New Manifesto Declaring the Importance of Patients’ Values in Treatment Decision Making
CancerCare® has announced the publication of a patient manifesto, declaring the fundamental importance of including patients’ values and priorities in cancer treatment planning. This manifesto will be used to inform and advocate with legislative policymakers, insurers, healthcare administrators, electronic medical record developers and clinicians regarding the inherent challenges in shared decision making between patients and physicians. It also provides a roadmap to guide the development of resources and tools that will help integrate what is important to patients into their treatment decision making process. The manifesto was developed as part of CancerCare’s Patient Values Initiative (PVI), a multi-pronged effort aimed at reframing the national healthcare policy dialogue to ensure that including patients’ priorities in treatment decision making becomes the true standard of care.
The CancerCare Patient Values Manifesto was developed by a working group of diverse stakeholders (patients, caregivers, clinicians, advocates) based on their real-world experiences as well as the findings from surveys of physicians, nurses, social workers and patients.
The central premise of the CancerCare Patient Values Manifesto is that people with cancer and their clinical care teams have a fundamental right to relationships rooted in mutual respect, where communication is open and culturally competent, plain language information is exchanged, goals are shared and patients’ priorities are acknowledged throughout the continuum of care.
Treatment plans should reflect a shared understanding of the patients’ goals and personal priorities, while including physicians’ judgments that optimize treatment for the individual and their family. Equally important is a shared understanding that the physical, emotional and financial consequences of a cancer diagnosis and its treatment can be felt by patients and families for years to come.
Historically, an uneven balance of power between people with cancer and their physicians has limited the two-way flow of information and made it difficult for patients and caregivers to partner with their physicians in making informed treatment decisions. Though this dynamic has started to shift in recent years, there is the need for more widespread adoption of patient-centric care models, where care is delivered that is meaningful and appropriate to the individual patient’s circumstances and goals.
The manifesto includes a roadmap to support CancerCare’s Patient Values Initiative:
- Establish a relational partnership that fosters shared decision making where patients and physicians acknowledge their responsibility to contribute to the treatment plan;
- Recognize that the patient experience is fluid and patients’ priorities may shift; and
- Create an environment that fosters trust and mutual respect through plain language information exchange and culturally competent care tailored to the needs of patients and families.
“The oncology community is learning that integrating patient priorities into treatment decision making is a fundamental part of delivering the right care at the right time to each individual patient,” said Ellen Miller-Sonet, CancerCare’s Chief Strategy and Policy Officer. “It’s particularly appropriate that we are disseminating the CancerCare Patient Values Manifesto at the 2019 ASCO meeting, as it embodies the theme of this year’s gathering, ‘Caring for every patient, learning from every patient.’”
The manifesto builds on a body of research led by the PVI and its Advisory Board of experts from across the oncology community. Recent publications include two white papers. The first publication, Many Voices of Value, discusses the findings from focus groups with oncology social workers and patients, and highlights the value of including what’s important to patients in their treatment plans, before treatment begins.
Its second PVI white paper, Decision Making at the Point of Care: Voices of Oncology Providers, reports on in-depth interviews with 15 oncology providers. The notable finding is that while many oncology providers want to learn more about their patients’ quality of life priorities, there are significant barriers to ensuring that what is important to patients becomes part of treatment decision making.
Learn more about the CancerCare Patient Values Initiative at www.cancercare.org/patientvaluesinitiative.
Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Our comprehensive services include counseling and support groups over the phone, online and in-person, educational workshops, publications and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. To learn more, visit http://www.cancercare.org or call 800-813-HOPE (4673).