June 23, 2016

Whitehouse Introduces Bill to Improve Care for Patients with Advanced Illnesses

At Senate Aging Committee hearing, Rhode Island doctor praises innovative Whitehouse legislation

Washington, DC – At a hearing of the Senate Special Committee on Aging today, Senator Sheldon Whitehouse unveiled a bill to improve care for Medicare beneficiaries with advanced illnesses like Alzheimer’s disease, cancer, and heart disease.  Approximately 90 million Americans are living with advanced illness, and that number is expected to more than double in the next 25 years.  Whitehouse’s Removing Barriers to Person-Centered Care Act would promote better coordination between health care providers, and place greater emphasis on the preferences of Medicare beneficiaries with advanced illnesses. 

“Too many Rhode Island Medicare patients battling difficult illnesses are struggling to get the right care at the right time,” said Whitehouse. “We need to break down the barriers between patients and the care they need.  Because so many of the rules and incentives in our health care system are tied to the payment structure, we should design payment systems that support new models of coordinated care that are focused on human beings and not some rule or regulation.”

“As a hospice and palliative medicine physician I have the honor of providing care to patients in the last months and years of their lives,” said Dr. Kate Lally, Chief of Palliative Care and Hospice Medical Director for Care New England Health System, Medical Director of the Integra Accountable Care Organization, and Assistant Professor of Medicine at Alpert Medical School of Brown University, who testified at the hearing. “It is also through this lens that I view the gaps our sickest patients often fall through and am honored to participate in this important discussion as Senator Whitehouse and the members of the Special Committee on Aging lead the way to changing how we care for patients with serious illness.”

Whitehouse’s legislation would establish a pilot program administered by the Centers for Medicare and Medicaid Services (CMS) made up of twenty “advanced care collaboratives” of affiliated health care providers and community-based social service organizations.  Collaboratives would receive a planning grant to assess the needs of the population of patients it would serve; to purchase or upgrade 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, collaboratives would enter a three-year payment agreement with Medicare to provide coordinated, high-quality care for their target patient population.  Under the terms of the pilot program, CMS would waive regulations to promote innovative care for patients with advanced illness.  Waivers would be granted to:

  • Allow Medicare patients to receive hospice 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 an inpatient 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,” denying these services to those who are seriously ill but still mobile.
  • 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 forms another barrier for patients seeking these services, especially in underserved and rural areas.

“The Removing Barriers to Person-Centered Care Act is a critical step forward to achieving high-quality, coordinated care for those with advanced illness. This legislation allows for important innovations in care delivery and removes obstacles to support patients throughout the care continuum,” said Tom Koutsoumpas, Co-Chair of the Coalition to Transform Advanced Care’s (C-TAC) Board of Directors.  “We commend Senator Whitehouse on his leadership and C-TAC is pleased to strongly support this legislation.” 

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.

A report by the Institute of Medicine noted that reorienting payment models used by major health care deliver programs—like Medicare and Medicaid—could improve health care quality and better confront the challenges of patients with advanced illnesses.  According to the report, “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.” 


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