WASHINGTON – U.S. Senator Mark R. Warner (VA) has introduced health reform legislation that will strengthen the quality and availability of counseling, support services and care management for patients and families coping with life-limiting illnesses. The Warner legislation addresses inadequate access to often unorganized care planning services that can result in unnecessary tests, treatments and hospitalizations – medical services that more informed individuals might not otherwise choose.

 Senator Warner’s legislation, which is expected to be incorporated into comprehensive health reform legislation currently being considered by Congress, has been endorsed by several leading organizations, including the American Association of Retired Persons (AARP), the Alzheimer’s Foundation of America, the National Hospice and Palliative Care Organization, and the National Association for Home Care and Hospice, among others. A complete list is provided below.

“This legislation will not deny health care to patients and families that want it,” Senator Warner said. “But I firmly believe that any comprehensive health reform should include more information, counseling and resources that will allow patients, their families, their caregivers and others to consider and discuss decisions about when and how long to pursue treatments at the end of life.”

“Currently, we leave it to families to resolve these extraordinarily difficult decisions, often in moments of crisis, with very little guidance or planning,” Senator Warner said. “Giving patients and their families the tools to make more informed choices about their options will increase the patient’s quality of life, provide better support for family caregivers, and prevent unnecessary and expensive health care expenditures.”

The legislation creates the advanced illness care management benefit within Medicare, which will promote more thoughtful discussion and counseling about the care options available for those with a life expectancy of 18 months or less. It also would establish a comprehensive public education and outreach campaign to encourage advanced care planning to enhance the patient’s quality of life.

                By some estimates, 27% of Medicare costs occur in the final year of life. Studies suggest that the nationwide application of the enhanced care planning tools included in Senator Warner’s legislation could reduce Medicare spending by an estimated $15 billion over 10 years, even as it provides more structured information and planning services that will better support the patient’s wishes and improve their quality of life.

Senator Warner co-founded the Virginia Health Care Foundation, administered a state Medicaid program, and enacted landmark legislation improving state protections for those in adult care during his term as Virginia Governor. He acknowledged that personal experience has shaped his thinking on these issues: Senator Warner’s mother has experienced a long and difficult struggle with Alzheimer’s disease. Throughout his public career, Senator Warner has urged patients and their families to consult with their health care providers, counselors, religious advisors and others when making decisions about care options and quality of life issues.

Senator Warner’s Senior Navigation and Planning Act of 2009 includes the following:

• Enhanced Medicare and Medicaid Coverage of Advanced Illness Care Management Services: Beginning in 2011, individuals diagnosed with a life expectancy of 18 months or less will have access to a new advanced illness care management benefit administered by hospice providers. The current Medicare Hospice benefit only applies to individuals diagnosed with a life expectancy of six months or less, and it requires patients to give up curative treatment.  The advanced illness care management benefit includes palliative care consultation services, patient and family counseling, respite services, and in-home caregiver training, while also allowing for the continuation of curative treatments. 
• A Requirement for Physicians to Provide Certain Medicare Beneficiaries with Information on Advance Directives and other Planning Tools: Beginning in 2014, Medicare reimbursements will not be provided until physicians provide individuals with information on advanced care planning for patients specifically diagnosed with end-stage cancer, renal disease, congestive heart failure, progressive neurodegenerative disorder, oxygen-dependent chronic pulmonary disease, or any other condition with a similar level of medical necessity determined appropriate by the Secretary of Health and Human Services (HHS).
• Incentives for Providers to Achieve Accreditation and Certification in Hospice and Palliative Care: If an eligible inpatient hospital, inpatient critical access hospital, and skilled nursing facility has in place an accredited palliative care program and meets utilization criteria, the hospital or skilled nursing facility would receive a Medicare bonus payment of 2% for fiscal years 2011 through 2016, and a bonus payment of 1% for fiscal years 2017 through 2020.  After fiscal year 2020, if an eligible hospital or skilled nursing facility does not have in place an accredited palliative care program, the hospital would see reimbursements decreased by 1%.  Exceptions will be crafted for smaller hospitals and nursing homes.
• More Comprehensive Discharge Planning for Facilities: By January 1, 2013, discharge procedures for hospitals, skilled nursing facilities, home health agencies, and hospice programs must include a discussion with patients and their families about the general course of treatment expected, the likely impact on the length of life and function, and the procedures they should use to secure help if an unexpected situation arises.  Caregivers and families, with the patient’s consent, or the patient’s surrogate decision maker, can also receive this information.
•  Increased Public Awareness about the Importance of End-of-life Planning: To increase the awareness of advance directive planning, HHS will design and implement a national education campaign to raise public awareness of the importance of planning for care near the end of life. This grant-funded campaign will focus on the need for readily available legal documents that clearly express an individual’s wishes through advance directives, including living wills, comfort care orders, and durable powers of attorney for health care. In addition, it directs HHS to launch a consumer-friendly Web site, and establish a national toll-free information line for consumers on advanced directives and other planning tools. HHS also will be directed to establish a national advisory panel that includes representatives from the healthcare, religious, and family caregiver communities, and assembles other end-of-life medical expertise, to evaluate and recommend improvements to the program.

“Overall health reform should include a thoughtful process that informs patients, their families, and caregivers on how to navigate and think through decisions about when and how long to pursue treatments at the end-of-life,” Senator Warner said.  “This will allow us to foster a culture in which all of us will have the ability to age well, with dignity, based on our own wishes and in the setting of our choosing.”

 The following organizations have endorsed Senator Warner’s Senior Navigation and Planning Act of 2009:

AARP, the American Association of Retired Persons: “The AARP is pleased to endorse the Senior Navigation and Planning Act.  This bill would take important steps to help individuals and their families better plan for their end-of-life care needs and ensure that their wishes for care are respected. Most individuals and their families do not want to think about long-term care, let alone the care and support they may need in the final stage of their lives.  Yet it is so vitally important for families to have conversations, in non-crisis situations, about their wishes for care at the end-of-life, so that individuals’ wishes are known and can be respected.”

Donald Schumacher, president and CEO of the National Hospice and Palliative Care Organization: “Don’t we deserve as much compassion at life’s end as we get at its beginning?  Senator Warner’s legislation will ensure that patients and families are able navigate the journey at the end of life with the necessary information and support that will bring dignity, quality care, and hope when they are most needed. For more than 30 years, hospices have been providing high-quality care to people at one of life’s most challenging times. This legislation uses the knowledge and expertise of the hospice and palliative care community in a valuable way.”

Eric J. Hall, president and chief executive officer, Alzheimer's Foundation of America: "The Alzheimer’s Foundation of America is pleased to endorse the Senior Navigation and Planning Act of 2009.  For the millions of Americans with Alzheimer’s disease or a related dementia, end-of-life planning is essential. By providing advance directive education and planning services and a new transitional care benefit, this act will help reduce the emotional toll on families and offer much-deserved dignity to individuals with dementia at the end of life.

We thank Senator Mark Warner for his leadership in helping to reduce the stigma and fear that surrounds these issues and to improve quality of life in general for families affected by this disease."

Richard Payne, MD, Professor of Divinity and Medicine at the Duke University Divinity School’s Institute on Care at the End of Life: “We need innovative models of care that combine community desire and community assets to care for the ill and dying among us. Faith communities are a logical and relatively untapped resource that can help meet those needs. The proposed legislation provides groundwork that can spark desperately needed innovation in the way we care for people at the near end of life.”

Jill Kagan, chair, National Respite Coalition: "The ARCH National Respite Coalition is pleased to support Senator Warner's Senior Navigation bill.  End-of-life care may be a difficult issue to confront, but we support the provisions of this legislation that make it that much easier for families to face head on. We are especially pleased to see the inclusion of respite services under Medicare and Medicaid Transition Care. At such a difficult time, support for family caregivers is absolutely critical."

Richard Anderson, president, Well Spouse Association, a volunteer-based organization whose mission is to provide peer emotional support and information to the husbands, wives and partners of the chronically ill and/or disabled:   “The Well Spouse Association represents and supports spousal caregivers. We particularly support Senator Warner's Senior Navigation and Planning bill for the measures it includes for respite for family caregivers. Of all family caregivers, spousal caregivers are the most seriously affected in their health by the 24/7 home care they give their loved one. Respite breaks for the caregiver are vital to help them regain some balance in their life, and get spiritual strength to go on with the caregiving.”

UnitedHealth Group Executive Vice President and Chief of Medical Affairs Reed V. Tuckson, MD:  "Senator Warner's legislation has the opportunity to fundamentally transform the way terminally ill patients and their families navigate the difficult decisions encountered at the end of life. We know that when the elderly and their families are provided with relevant information and resources about care options, like hospice, palliative care and the use of advanced directives, they are able to make more informed decisions.  By combining the best practices of the public and private sectors, this legislation will ensure that patients facing the end of life are provided  -- through shared decision making with their physicians and caregivers -- the most appropriate and sensitive care.”

Randall Krakauer, MD, head of Medicare Medical Management at Aetna:  "In the pursuit of curative care, we too often fail to engage patients and their loved-ones in discussions of additional options for dealing with advanced illness, and to support them in their choices. The Senior Navigation and Planning Act of 2009 is an important step in the right direction.  It will help patients and families make informed decisions that are right for them by providing much needed information and resources at a time they may be under great stress.  Patients and their families should not be left to go it alone when help is available to provide comfort and pain relief as well as psychosocial support.  Aetna endorses this legislation and hopes to collaborate in the realization of its goals."

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