WASHINGTON – U.S. Sens. Mark R. Warner (D-VA) and Johnny Isakson (R-GA) introduced legislation today designed to give people with serious illness the freedom to make more informed choices about their care, and the power to have those choices honored. The Care Planning Act of 2015 creates a Medicare benefit for patient-centered care planning for people with serious illness. It will reimburse a team of healthcare professionals for providing a voluntary, structured discussion about the patient’s goals, illness, and treatment options. Under this legislation, a written plan would reflect the informed choices made by patients in consultation with their health care team, faith leaders, family members and friends. The Care Planning Act also provides resources for public and professional education materials about care planning.

Sens. Tammy Baldwin (D-WI), Susan Collins (R-ME), Amy Klobuchar (D-MN), and Shelley Moore Capito (R-WV) are original co-sponsors.

“Everybody has a story. My story is my mom. For 11 years she had Alzheimer’s, and for nine of those years, she couldn’t speak. One my greatest regrets is that we never had a full conversation about her wishes when she was still well enough to make them known. So I know firsthand just how easy it is to put these conversations off because it’s incredibly painful to imagine a loved one becoming so ill that he or she is unable to make decisions about their own medical care,” said Sen. Warner, whose mother, Marjorie, passed away from Alzheimer’s disease in 2010 at the age of 81. “This bill takes a patient-centered approach by making sure more information is available to patients and their families, and by ensuring that patients have an opportunity to discuss their treatment options, plan for their future care, and make their choices known.”

Sen. Warner continued, “In the last several years, some have deliberately  chosen to misrepresent the purpose of care planning services to frighten people and to score cheap political points. It’s about making sure that your doctors, your hospital, and your family know what choices you have made about your care. If a patient prefers to explore every possible treatment option, that choice will be respected. And if an individual prefers a different approach after informed consultations with their health team, their family and others, those choices should be documented and honored too. The important thing is being able to make that decision and trust that it will be respected.”

“I’m proud to join Sen. Warner in introducing the Care Planning Act today to provide individuals who have been diagnosed with a serious or life-threatening illness and their loved ones an opportunity to have face-to-face conversations with their doctors, nurses and religious advisors to develop plan for care,” said Sen. Isakson. “I know from my own family’s experience that having a plan makes a world of difference in ensuring a high quality of life during a loved one’s last days. I encourage my colleagues to support this legislation because it will go a long way in honoring patients’ wishes and empowering people to take charge of their own health care.” 

The Care Planning Act:

• Establishes Medicare reimbursement for healthcare professionals to provide a voluntary and structured discussion about the goals and treatment options for individuals with serious illness, resulting in a documented care plan that reflects the informed choices made by patients in consultation with members of their health care team, faith leaders, family members and friends.

• Tests new models for more intensive services for those with advanced illness, and provides funding to support the development of a public information campaign to encourage effective care planning. It also provides grants to develop materials and maintain a web site with information about advanced care planning, portable treatment orders, palliative care, hospice, and planning services, and directs the U.S. Dept. of Health & Human Services (HHS) to include information about advanced care planning in the official Medicare & You handbook.

• Puts structures in place to focus providers on evidence of patient preferences, such as directives from other states or past discussions about treatment goals, and requires documentation of plans made prior to discharge from health facilities to assure that care plans travel with patients after discharge.

• Directs HHS to develop quality metrics that will measure synchronicity among the individual’s stated goals, values, and preferences with documented care plans, the treatment that is delivered, and the outcome of treatment.

• Explicitly prohibits the use of funds in violation of the Assisted Suicide Funding Restriction Act of 1997, and further requires that all services be free from discrimination based on advanced age, disability status, or the presence of advanced illness.

Warner and Isakson previously introduced the legislation in the 113^th Congress.

“Wisconsin has been a leader in promoting comprehensive and patient-focused advanced care planning services and I’m proud to join this effort to ensure all Americans have the opportunity to better manage their care,” Sen. Baldwin said. “The Care Planning Act puts more control in the hands of patients, and empowers doctors to put patients first in order to improve health care quality for all of our families.”

“Unfortunately, most patients do not routinely make advance plans for their care should they be diagnosed with a serious or life-threatening illness. Advance care planning has been shown to increase satisfaction and improve health outcomes because people with advance directives are more likely to get the care that they want, in the setting they prefer, and avoid the care that they don’t want,” said Sen. Collins. “The Care Planning Act, which we are introducing today, will provide an opportunity for patients to have a structured discussion with their health care providers about their goals and treatment options so that they can make their choices known and develop a plan of care in consultation with their loved ones.”

“Patients facing serious and advanced illnesses should have the information and support they need to plan for their care and make their own treatment choices,” Sen. Klobuchar said. “Our commonsense bill will help ensure that patients and their families are able to consult with their doctors to understand the full range of treatment options available and shape care plans that reflect their wishes.”

“There are few things more challenging than the sensitive decisions that must be made with loved ones at the end of life. Having recently lost both of my parents, I speak from personal experience when I say how important it is for families, loved ones and medical providers to have clear direction when making decisions about treatment in their final days. Sadly, Medicare will not currently pay for doctors to have this conversation. I am joining Senators Warner and Isakson in supporting the Care Planning Act of 2015 because patients and their families should have access to the planning and resources needed to make a fully informed decision about care options, and to have those wishes respected,” said Sen. Capito.

The legislation has the support of more than 40 national and local health care and elder advocacy organizations, including: the AARP, Alliance for Aging Research, Alzheimer’s Association, Alzheimer’s Foundation, AMDA – The Society for Post-Acute and Long-Term Care Medicine, American Association for Long Term Care Nursing, American Geriatrics Society, American Health Care Association, American Heart Association, Augusta Health, Cambia Health Solutions and the Cambia Foundation, Capital Caring, Caregiver Action Network, Center for Elder Care and Advanced Illness, Altarum Institute, Coalition to Transform Advanced Care, Connected Health Resources, Dementia Action Alliance, Emory University Woodruff Health Sciences Center, Good Samaritan Hospice, Gundersen Health System, Home Healthcare Hospice and Community Services, Latino Alzheimer's & Memory Disorders Alliance (LAMDA), Latinos Against Alzheimer's, National Academy of Elder Law Attorneys, National Association for Home Care & Hospice, National Association of Activity Professionals, National Association of Directors of Nursing Administration/Long Term Care, Inc., National Committee to Preserve Social Security and Medicare, National Consumer Voice for Quality Long-Term Care, National Council on Aging, National Hispanic Council on Aging (NHCOA), National Hospice and Palliative Care Organization, National Partnership for Hospice Innovation, National Transitions of Care Coalition, Parkinson’s Action Network, Second Wind Dreams, SeniorSherpa, League of United Latin American Citizens (LULAC), Union for Reform Judaism, United Methodist Church – General Board of Church and Society, University of Virginia Health System, USAgainst Alzheimer’s, Visiting Nurse Associations of America, and Women’s Institute for a Secure Retirement (WISER).

“AARP is pleased to endorse the bipartisan Care Planning Act. This legislation would help respect individuals’ goals, values, and preferences for care and treatment. Importantly, this legislation recognizes and supports the critical role that family caregivers often play in providing and coordinating care for their loved ones,” said Joyce A. Rogers, AARP Senior Vice President, Government Affairs.

“The Alzheimer’s Association applauds Senators Warner and Isakson on the Care Planning Act. This bipartisan legislation will help ensure that Medicare beneficiaries with life-threatening conditions, including Alzheimer’s disease, have the opportunity to receive patient-and-family-centered planning services,” Robert Egge, Executive Vice President of Government Affairs at the Alzheimer's Association, said. “Care planning for Alzheimer’s disease and dementia improves the quality of medical care that an individual receives and results in a higher quality of life.”

“Medical advances have enabled many Americans with heart disease and stroke to live much longer than they have in the past. Patients who reach the late stages of these conditions often face prolonged, unpredictable treatment scenarios,” said Nancy Brown, CEO of the American Heart Association. “Giving them the opportunity to participate in advance-care planning with their providers helps them to gain a better understanding of their conditions and prognosis. It also involves them in decisions on different treatment options that meet their goals, values, and wishes. The association thanks Senators Isakson and Warner for sponsoring this legislation and recognizing the important role this process plays in aligning quality care with what matter most for patients and their families.”

“Senator Warner is to be applauded for his attention to this issue so vital to the interests of all Americans.  We hope this bill garners the attention it merits and gains the bipartisan and bicameral support it deserves,” said Malene Davis, Capital Caring President and CEO.

“Nothing is tougher for families than having ‘the conversation’ to make a loved one’s wishes known and followed when they are facing a serious advanced illness,” noted John Schall, CEO of the Caregiver Action Network. “The Care Planning Act is an important step forward for patients and families to choose the kind of care they want.” 

“The Care Planning Act would provide much needed assistance to individuals with serious health conditions by giving them access to more information about potential treatment options and ensuring that the course of treatment they arrive at is consistent with their personal goals, values and preferences,” National Association for Home Care & Hospice President Val J. Halamandaris said. “The benefit envisioned by the Act embodies key elements – including use of an interdisciplinary team and allowing for a series of discussions with a variety of experts – that have proven tremendously effective in empowering individuals to make deliberate and thoughtful decisions on the course of care that is right for THEM.   The Care Planning Act would remove some of the overwhelming confusion and anxiety that so often accompany health care decision making, and assure that an individual’s chosen treatment plan is communicated among care providers.  We wholeheartedly endorse this important legislation, and commend Senators Warner and others for their efforts.”

“NCOA supports the Care Planning Act. Advanced care planning is important for people with Medicare, their families and for the country,” said National Council on Aging President and CEO Jim Firman.

“The hospice community has long championed the need for Americans to discuss their healthcare preferences with their loved ones and have the support of an interdisciplinary team in seeing those preferences realized,” said J. Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization (NHPCO).  “Self-determination is at the core of the hospice philosophy and care model, and we believe that The Care Planning Act will allow some of our most vulnerable patients to have much more support and direction in their health care.” 

“Latinos struggle every day to manage multiple chronic conditions like diabetes and Alzheimer’s, making care planning and coordination services essential to improving health outcomes for the nation’s Latino community,” Jason Resendez, Director of LatinosAgainstAlzheimer’s, a coalition convened by USAgainstAlzheimer’s, stated. “We applaud Senators Warner and Isakson for their efforts to empower patients and caregivers through the Care Planning Act.”

Sens. Warner and Isakson, who are both on the Senate Finance Committee, have worked together on a series of bipartisan bills to improve access and quality of medical care for some of our country’s most vulnerable patients. On January 28, the Senators introduced the Medicare Home Infusion Site of Care Act, to allow beneficiaries who need intravenous medications to receive their infusion treatments in the comfort and convenience of their homes and at a lower cost to Medicare. Sens. Warner and Isakson are also leading of a bipartisan effort to improve outcomes for Medicare patients requiring chronic care.