March 18, 2019

Whitehouse Bill Would Improve Care for Patients Facing Advanced Illnesses

Legislation would create pilot program to promote better coordination between health care providers, placing greater emphasis on individual patient needs

Washington, DC – Senator Sheldon Whitehouse today reintroduced a bill aimed at improving care for Medicare beneficiaries with advanced illnesses like Alzheimer’s disease, cancer, and heart disease.  Whitehouse’s Removing Barriers to Person- and Family-Centered Care Act would establish a pilot program to test a new payment model that promotes better coordination between health care providers and places greater emphasis on the needs and preferences of Medicare beneficiaries with advanced illnesses. 

“Seniors and health care providers have shared with me that our health care system makes it difficult for Medicare patients facing serious illnesses to get the care they need when they need it,” said Whitehouse.  “We need to break down the barriers to providing the very best possible care that reflects patients’ wishes.”

Approximately 80 percent of older adults are living with at least one chronic disease, and the number of older Americans is expected to double by 2060.

Whitehouse’s legislation would establish a pilot program administered by the Centers for Medicare and Medicaid Services (CMS) to create fifteen advanced care cooperative agreements.  Each cooperative would be composed of affiliated health care providers, professionals, and community-based social service organizations, and would receive a planning grant to assess the needs of the patients it would serve.  Grantees would also use this funding to modify, upgrade, or purchase health information technology to facilitate better coordination of care between providers, and to support education and training on documenting and communicating beneficiary treatment preferences and goals. 

Once planning is complete, grantees would enter a three-year payment agreement with Medicare to provide coordinated, high-quality care for its target patient population.  Under the terms of the pilot program, CMS would waive certain restrictions on providing the services that can benefit patients with advanced illness.  Waivers would be granted to:


  • Allow Medicare patients to receive palliative care and curative treatment at the same time.  CMS’s current regulations force patients to choose one or the other for their terminal illness.
  • Allow patients to receive Medicare coverage in a skilled nursing home without a consecutive three-day inpatient hospital stay.  Under current Medicare rules, patients are often charged for skilled nursing care after they leave the hospital stay because they were hospitalized for observation rather than admitted to the hospital.
  • Allow Medicare patients to receive home health services without the requirement that they be homebound.  Under current rules, a patient’s condition must have progressed such that there “exists a normal inability to leave home”, which prevents patients who are seriously ill but still mobile from benefiting from these services.
  • Allow nurse practitioners to sign home health and hospice care plans and certify patients for the hospice benefit.  Right now, only doctors can do so, even though nurse practitioners are often the ones administering home health and hospice care.  This creates another barrier for patients seeking these services, especially in underserved and rural areas.

The bill would also create two new coverage options under Medicare’s hospice benefit, which is available for Medicare beneficiaries with terminal illnesses.  Those options would:

  • Allow Medicare coverage of room and board at inpatient facilities for individuals who elect and are certified for routine hospice care, but whose home environment is not safe for home-based hospice care.  Currently, Medicare does not pay for room and board at nursing facilities for individuals who elect routine level hospice care.  Dying patients whose home environment is not conducive to home-based care often opt to receive rehabilitative services to retain Medicare coverage of facility-based care, leading to patients receiving unnecessary and possibly harmful rehab.
  • Allow Medicare coverage for short-term, home-based respite care as an alternative to inpatient respite care for individuals who elect and are certified for routine hospice care.  Providing patients and their caregivers the option to stay in their home for the receipt of respite care would alleviate the stress of transporting a dying patient to and from an inpatient facility.

“Senator Whitehouse’s bill to improve care for patients with advanced illnesses is a patient focused approach of assuring that the individual needs, choices, and desires of these vulnerable patients are met,” said John Keimig, President and CEO of Healthcentric Advisors. 

According to a report by the Institute of Medicine, “A major reorientation and restructuring of Medicare, Medicaid and other health care delivery programs is needed in order to craft a system of care designed to ensure quality and address the central needs of all people nearing the end of life and their families. Current financial incentives and a lack of more appropriate alternatives drive a reliance on the riskiest and most costly care settings. These incentives should be changed, and positive alternatives should be further developed.” 

“This bill eliminates barriers for many people to access quality end of life care, like the burden of a three-day hospital stay, which adds additional costs to the system and deprives patients of the healthcare they want in a hospice or other setting,” said Maureen G. Glynn, Esq., Co-chair of the Improving Care Coalition, a project of Rhode Island State Nurses Association.  “The Removing Barriers to Person- and Family-Centered Care Act would save patients from the agonizing decision to stop treatment in order to receive hospice benefits.”


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