WASHINGTON – U.S. Senators Chris Coons (D-Del.) and Bill Cassidy, M.D. (R-La.) and U.S. Representatives Diane Black (R-Tenn.), Mike Thompson (D-Calif.), Chris Collins (R-N.Y.), and Peter Welch (D-Vt.) today introduced legislation to encourage Medicare beneficiaries to create electronic advance directives, legal documents that allow patients to clearly articulate their preferences for their medical care should they suffer from a debilitating illness or condition. The Medicare Choices Empowerment and Protection Act would offer a small, one-time financial incentive to encourage Medicare beneficiaries to provide clear legal guidance to their medical providers and family members should they become incapable of speaking for themselves.  With recent attention on the announcement from the Centers for Medicare and Medicaid Services to pay physicians for advance care planning, this legislation would incentivize Medicare beneficiaries themselves to create and register a certified and secure advance directive online.  In addition, the bill would provide beneficiaries with access to a website with model advance directives representing a range of options.

According to a 2006 study by the Pew Research Center, 70 percent of Americans have thought about their health care preferences should they be faced with a life-threatening illness or injury, but only one-third have completed an advance directive. Under the Medicare Choices Empowerment and Protection Act, Medicare beneficiaries would be able to voluntarily create and register an electronic advance directive with the Centers for Medicare & Medicaid Services (CMS) at any time. Advance directives would be created through, and maintained by, outside organizations certified by CMS, and could be modified or terminated at any time by the beneficiary. An advance directive would include any written statement that outlines the kind of treatment and care a beneficiary wants or does not want under certain conditions, and can include identification of a health care proxy. Beneficiaries would also receive a small, one-time incentive for registering an electronic advance directive.

To address concerns about confidentiality, the Medicare Choices Empowerment and Protection Act requires both CMS and outside groups maintaining advance directives to hold the highest standards for privacy and security protection as well as system functionality. CMS would only keep track of the certified organization through which a beneficiary has created an advance directive and would not keep a database of these documents. The bill does not interfere with any state laws governing advance directives.  

Read a one-page summary of the legislation here: http://1.usa.gov/1OdT2Qn

"Every American deserves the opportunity to make his or her own health care decisions, but too often, people don’t make plans for their medical care in a situation where they cannot speak for themselves," Senator Coons said. "Too many Americans leave their medical wishes to chance or rely on distraught family members to make decisions for them. This bill will encourage more Americans to make proactive choices about their medical care, reducing confusion and heartache and empowering individuals to spend their final days on their own terms. I’m proud of the broad coalition of palliative care experts and religious organizations that support our bill and understand the overwhelming need to encourage people to have these difficult, but critically important conversations.”

“As a long-term care nurse, I saw the pain that so many experienced while grappling with medical decisions for a loved one who can no longer speak for themselves. That is why I am proud to sponsor this legislation incentivizing Medicare beneficiaries to make a plan that puts them in charge of life-sustaining health care decisions, not a faceless government bureaucrat looking for a quick way to cut costs. By encouraging seniors to create an advance directives document, we can ensure their wishes are honored and that, even amid catastrophic circumstances, the sanctity of life is preserved and protected,” said Congressman Diane Black.

"With this legislation, patients are more likely to decide beforehand how they wish to be treated at the end of their life. This allows the patient to communicate to her or his doctor and to their family their end of life wishes," said Dr. Bill Cassidy.

“Every person has a right to determine their own end-of-life care,” said Rep. Thompson. “This bill will help put Medicare patients in charge their own end-of-life health care decisions by providing patients with the tools they need to direct their own care. I worked on this issue in the California State Senate and I am proud to continue this work to empower patients.”

“The National Right to Life Committee supports the ‘Medicare Choices Empowerment and Protection Act’ because the bill provides for neutrally enabling older Americans and others clearly to state their wishes concerning the provision of life-saving medical treatment. The pro-life movement has been concerned that advance care planning is too often used, in an effort both to cut health care spending and advance the quality of life ethic, to ‘nudge’ people to agree to reject life-saving measures (including assisted feeding) using unbalanced, distorted, and even false data. By contrast, this bill would create and promote a government website that gives a choice of alternative advance directive forms, including those that direct treatment and assisted feeding, like our own ‘Will to Live.’ It would ensure that the online providers of advance directives to be promoted by Medicare must ensure their documents comply with State laws, including those that contain important informed consent safeguards.  The bill would require that Medicare beneficiaries be told, ‘You should not feel pressured to violate your own values and preferences, and you are entitled to implement them without discrimination based on age or degree of disability.’ We urge swift Congressional passage to bring safeguards and balance to federally funded advance care planning,” said Burke Balch., director of the National Right to Life Committee's Powell Center for Medical Ethics.

“Advance Care Planning is becoming increasingly important due, in part, to increasing numbers of us living longer with advanced illness or infirmity often losing decision making capacity along the way,” said John Goodill, MD, Director, Palliative Care Education and Outreach at Christiana Care Health System. “We must find ways to integrate advance care planning into our usual health care delivery systems.  Advance Care Planning is a process of conversations, decision-making, and documentation.  It is not, simply, about a piece of paper or form.  A well-done advance directive guides and empowers surrogate decision makers and health care providers to choose and provide the type of medical care and individual would want.  This leads to better outcomes for all involved.” 

“Today’s legislation empowers millions of Americans to take control of their healthcare decisions through an advance care plan. We commend Senators Coons and Cassidy and Congressman Black and Congressman Thompson for taking this bold legislative step that encourages all Americans to capture their healthcare wishes in the event they cannot make decisions for themselves,” said Jeff Zucker, CEO of MyDirectives, the world’s first completely free advance care planning tool. 

The bill is supported by The American College of Emergency Physicians, MyDirectives.com, Hospice Foundation of America, Third Way, American Nurses Association, The Coalition to Transform Advanced Care, Delaware Hospice, The Delaware End-of-Life Coalition, The Delaware Academy of Medicine/Delaware Public Health Association, and the Delaware chapter of American College of Emergency Physicians.

The full text of the bill is available here: http://coons.senate.gov/download/coons-cassidy-medicare-choices-empowerment-and-protection-act