Bipartisan Members of Congress Work to Help Americans Plan for Debilitating Illness or Condition
70% of Americans have thought about their preferences if they face a debilitating illness or condition, but only one-third have completed an advance directive
Legislation is the first of its kind to be endorsed by the Right to Life Committee
Republicans, Democrats work together to encourage Americans to complete ‘advance directives,’ plans for life-sustaining health decisions
Washington – U.S. Rep. Mike Thompson (CA-05), U.S. Senators Chris Coons (D-Del.), Bill Cassidy, MD (R-Louis.), John Barrasso (R-Wyo.), and Michael Bennet (D-Colo.) and U.S. Reps. Diane Black (R-Tenn.), Chris Collins (R-N.Y.), and Peter Welch (D-Vt.) today reintroduced 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. 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.
“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 care decisions by providing them 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 effort to empower patients.”
“I am proud to introduce this bipartisan legislation with my colleagues to empower patients to make their own health decisions on their own terms,” said Sen. Coons. “This bill will encourage more Americans to think about what kind of medical care they wish to receive should they not be able speak for themselves, which will reduce confusion and heartache and allow patients to spend their final days as they see fit. The breadth of supporting organizations just reinforces the overwhelming need to encourage people to have these difficult, but critically important conversations.”
"This legislation gives patients greater power and incentive to consult with her or his Doctor to decide end of life issues,” said Dr. Cassidy.
“Empowering patients to control their own health care decisions is an important personal priority of mine. As a doctor, I’ve learned that the best patient relationships are partnerships – with doctors providing information, so patients can make the best informed decisions,” said Sen. Barrasso. “This bill will help more Medicare patients communicate their personal decisions to both their families and health care providers. This will ensure that more patients get the care at the end of their life that they want.”
“Life-threatening illnesses and injuries are devastating for both patients and their loved ones,” Sen. Bennet said. “Advance care planning would provide seniors the support they need to manage their end-of-life care when they are most vulnerable. By encouraging seniors to make proactive plans, family members will face less confusion and more Americans will have ownership over their health care decisions.”
“Allowing patients to communicate their wishes with caregivers empowers them to take charge of their health care in the event they are unable to speak for themselves. By encouraging Medicare beneficiaries to plan ahead, their personal wishes are honored and made a priority,” said Rep. Black. “I am very proud to sponsor a bipartisan piece of legislation that keeps patients’ rights at the forefront of treatment based on their own values, not the priorities of the government or their doctors. As a nurse, I have too often seen families go through tremendously painful situations while making decisions for their loved one, and it is my hope that this bill offers some peace of mind in difficult circumstances.”
“This is an important piece of legislation that allows the very personal wishes of an individual to be respected when it comes to their care,” said Rep. Collins. “This bill will help ease the burden on loved ones and would provide clear guidance to healthcare providers when an individual has lost the ability to make and clearly communicate their desires.”
“Advance directives empower seniors to specify their health care preferences well in advance of a debilitating or terminal illness,” said Rep. Welch. “Having this important discussion with families and doctors in advance will give them peace of mind knowing that their wishes will be met should they not be able to make their own treatment decisions.”
“As staunch advocates for the patients we serve and our profession, we support legislation that empowers patients to plan in advance for the unforeseen and unimaginable. This bill would encourage Medicare beneficiaries to create advance directives to ensure individuals have provided clear guidance to their medical providers and family members about their health care decisions. This is why ANA applauds the reintroduction of the Medicare Choices Empowerment and Protection Act,” said ANA President Pamela F. Cipriano, PhD, RN, NEA-BC, FAAN.
The bill is supported by the National Right to Life Committee, Coalition to Transform Advanced Care, National Partnership for Hospice Innovation, American Nurses Association, Third Way, Healthwise, MyDirectives, Center for Practical Bioethics, Get Real Health, Coordinated Care Health Network, Cerner and Altarium, American College of Emergency Physicians, and Zen Hospice.
The full text of the bill is available here.