Empowering Patients with a Bill of Rights

Bill Of Rights by Nick Youngson CC BY-SA 3.0 Alpha Stock Images

The Goal: Optimal Patient Care

A cancer diagnosis is a harrowing experience. The patient must process a deluge of information and trust their medical providers to help them make the right treatment choices.

But not every patient gets the best guidance, or the best care. Disparities exist, and oftentimes, the patients most in need of informational and community support to help them advocate for themselves, are the very patients who can’t access it.

Because breast cancer afflicts one in eight women, the scale of the impact of even small improvements in breast cancer care can be enormous. Providers, patient advocates and other stakeholders have been working on this for decades. Their work continues today.

Europe Sets the Example in 2014

In February of 2014, on World Cancer Day, the European Cancer Patient’s Bill of Rights was unveiled. The initiative was spearheaded by the European Cancer Concord, a coalition of patients and providers in the EU. It aimed to address disparities in cancer care to ensure optimal patient outcomes across Europe, and was based on three principles:

  1. Patients should receive the most accurate information and should be proactively involved their care (i.e., shared decision making)
  2. Patients should have optimal and timely access to evidence-based, appropriate, specialised care
  3. Health systems should ensure all patients receive the best possible cancer care from diagnosis through survivorship, and should focus on continuous innovation and improvement

For patients facing mastectomy in particular, these principles should guide not just their oncology care but also their reconstructive surgical care – to ensure that every patient enjoys full and fair disclosure of all of their options, has their values and priorities factored into their treatment plan, is able to access appropriate and evidence based specialized (oncoplastic or plastic) care, and receives optimal surgical outcomes to ensure they enjoy the best possible quality of life moving forward. To recap:

  • Full and fair disclosure
  • Shared decision making
  • Access to plastics
  • Optimal surgical outcomes

… sounds like something flat advocates can (and should) get behind!

Oncologists in the U.S. Lead the Way in 2020

Providers in the US are now following Europe’s example. A coalition of leading oncologists and researchers recently published their own proposal for a Cancer Patient’s Bill of Rights based on similar principles, in JCO Oncology Practice (Feb 2020):

Proposing a Bill of Rights for Patients With Cancer,” JCO Oncology Practice (Feb 2020) – Dr, Joseph O. Jacobson, Prof. Leonard L. Berry, Patricia A. Spears, Dr. Karina Dahl Steffensen, and Dr. Deanna J. Attai

Of particular interest to patients facing mastectomy and considering their reconstructive options is the proposal’s principle of equitable treatment – including “the right to balanced information about treatment options, provided in understandable language, that takes into account their priorities and values.” These three components – balanced information, clear language, and shared decision making – are critical to achieving parity for flat closure.

Balanced information in the mastectomy setting means that surgical options are presented in a fair and unbiased manner, without the provider’s personal opinions unduly influencing the communication. Comments such as “you’re too young to go flat,” “you’ll change your mind,” and “you’ll look deformed” have no place in this paradigm. Nor does omission of flat closure as an affirmative choice.

Providers must offer the option to go flat as an aesthetic option. Clear language is fundamental in medicine, and that’s why we believe that the term “flat closure” should be adopted by providers – to ensure patients understand that going flat is an affirmative, viable, aesthetic choice worthy of the same respect and consideration as other reconstructive options.

Lastly, treatment decisions must take into account the patient’s priorities and values – this is another way to describe shared decision making. If the patient prioritizes being “one and done,” this should be a factor determining how the surgery is planned. To this end, plastics closure should be considered when indicated.

Empowering Patients

The proposed Bill of Rights aligns perfectly with our core values, in particular, full disclosure, shared decision making, and evidence-based medicine. It will be a tool to empower patients to demand a better standard of care as well as a means to for that standard of care to be broadly and uniformly implemented.

Thank you to Dr. Jacobson, Prof. Berry, Ms. Spears, Dr. Steffensen, and Dr. Attai for being a voice for patients!

Dr. Joseph O. Jacobson
Dana Farber
Prof. Leonard L. Berry
Patricia A. Spears
Dr. Karina Dahl Steffensen
University of Southern Denmark
Dr. Deanna J. Attai

“We believe that every patient has the right to receive the best possible care that aims to achieve the best possible outcome.” (Jacobson, et. al.)

We couldn’t agree more.

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Published by Not Putting on a Shirt

Founder of Not Putting on a Shirt, a mastectomy patients' rights organization that advocates for optimal surgical outcomes for patients going flat.

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