Sens. Rockefeller, Collins And Finance Members Introduce Legislation To Improve End-Of-Life Care

Washington, D.C.—This week, Senators John D. (Jay) Rockefeller IV (D-WV) and Susan Collins (R-ME) reintroduced a more expansive, comprehensive version of their Advance Planning and Compassionate Care Act with Senators Herb Kohl (D-WI), Ron Wyden (D-OR) and Tom Carper (D-DE) as original cosponsors. This important legislation would provide the tools and resources necessary to drastically improve care at the end of life. 

“Death is a very personal and complicated issue that we all must confront one day.  We have an obligation to help the sick maintain dignity and proper care for as long as possible,” said Senator Rockefeller, Chairman of the Senate Finance Subcommittee on Health Care. “Our efforts on health care reform must include improvements to end-of-life care. Far too often, patients, their families, and their health care providers do not have the information needed to make educated decisions about their options. We must make sure that patients’ final wishes are known, respected, and complied with – always.”

“Advancements in medicine have enabled more and more of us to live longer and healthier lives,” said Senator Collins.  “When medical treatment can no longer promise a continuation of life, however, patients and their families should not have to fear that the process of dying will be marked by preventable pain, avoidable distress, or care that is inconsistent with their values and needs.  Our legislation will improve the way our health care system care for patients at the end of their lives, and it will also facilitate appropriate discussions and individual autonomy in making decisions about end-of-life care.”

"Advanced planning is meant to provide clarification at a time that can be fraught with pain, confusion, and sadness. This bill will encourage the communication of what kind of care people want for themselves at the end of their life,” said Senator Herb Kohl, Chairman of the Special Committee on Aging.

“It is hard enough for families of patients at the end of life without worrying about whether they are fulfilling their loved one’s wishes,” Senator Ron Wyden said. “This legislation will make sure that Americans of all ages have access to knowledge about end of life care from health care providers, and that families and doctors have the clearest instructions to make sure that a patient’s death is dignified, as comfortable as possible, and as they intended.”

Senator Tom Carper said, “Every American should have access to compassionate and comprehensive end-of-life care. Every person should be able to talk with their doctors about their personal choices for health care at each stage of their lives. We’ve all had a loved one on their deathbed who has not done enough advance planning, and leave the hard decisions to their survivors. I believe it would be better for each person to have a choice and have a say. This legislation will enable the individual and their families to have one of the most important conversations of their life, with adequate support from their doctors.”

Bill Summary:

The Advance Planning and Compassionate Care Act of 2009 would:
  • Improve consumer information about advance care planning and end-of-life care.  This legislation would provide critically needed information and assistance to consumers and their families in order to guarantee that an individual’s final wishes for care are carried out. 
  • Improve provider education and training about advance care planning and end-of-life care.  This legislation would establish a National Geriatric and Palliative Care Service Corps modeled after the National Health Service Corps. 
  • Require portability of advance directives. The legislation would improve the portability of advance directives from one state to another, and require any existing advance directives to be prominently placed in a patient’s medical record so they are easily visible.
  • Authorize funding for new and innovative approaches to advance care planning.  Grants would be made available to states for development of electronic advance directive registries.  Grants would also be made available to develop systems to identify that a person has an advance directive using driver’s licenses, similar to how organ donor status is indicated. 
  • Provide Medicare, Medicaid, and CHIP coverage for advance care planning consultations.  This legislation provides Medicare, Medicaid, and CHIP coverage for advance care planning so that patients can routinely talk to their physicians about their wishes for end-of-life care.
  • Improve consumer access to hospice and palliative care.  This legislation provides greater consumer information about hospice and palliative care, so the public is well informed of the care options available at the end of life.  
  • Provide concurrent care for children.  This legislation requires that concurrent care – the provision of both curative and hospice care at the same time – is available to children who qualify for hospice.  This will make it possible for children to receive the palliative services they need from hospice while still pursuing potentially curative treatments.
  • Require the development of quality measures to assess end-of-life care.  The Secretary of HHS, acting through the Director of the Agency for Healthcare Research and Quality, shall require specific end-of-life care quality measures for each relevant provider setting. The legislation would also develop and implement accreditation standards and processes for hospital-based palliative care teams. 
  • Establish the National Center on Palliative and End-of-Life Care at the NIH.  Biomedical and health services research is vital across all phases of life. A new National Center on Palliative and End-of-Life Care at the NIH will lead biomedical research on palliative and end-of-life care.