Published on July 11, 2016 in Pawtucket Times

At a June hearing of the U.S. Senate Special Committee on Aging, Senator Sheldon Whitehouse calls for improving care for over 90 million Americans with advanced illnesses like Alzheimer’s disease, cancer, and heart disease. On the day of this Aging panel hearing, the Rhode Island Senator unveiled his legislative proposal, “Removing Barriers to Person-Centered Care Act,” at this panel hearing that would promote better coordination between health care providers, and place greater emphasis on the care preferences of Medicare beneficiaries with advanced illnesses.

The hearing, titled “The Right Care at the Right Time: Ensuring Person-Centered Care for Individuals with Serious Illness,” explored ways to improve the quality and availability of care and examined care models that are helping people with serious illness and their families.

Having Important Life Conversations

The June 23 hearing pulled together witnesses who called for “about the need for families and health care providers to prioritize these important life conversations, so that individuals’ wishes are known and person-centered care is prioritized,” noted U.S. Senator Susan Collins, who chairs the Senate Special Committee on Aging. In her opening statement the Maine Senator called for federal policies to “support efforts to relieve suffering, respect personal choice, provide opportunities for people to find meaning and comfort during serious illness, and – most important – remain in control of their own care.”

Advance care planning conversations to a patients’ physical, emotional, social and spiritual well-being are important in the care of a patient, says Collins. However, studies reveal that less than one-third of physicians have reported that their practice or health care system has a formal program in place to assess patients’ goals or preferences, she notes.

Collins also shared a personal story of a close friend who benefited from the person-centered care she received while she was a patient at the Gosnell Memorial Hospice House in Scarborough, Maine. “Despite her serious illness, because of hospice care her days were filled with visits from friends and families and many joyful moments, and she was surrounded by her family when she died peacefully,” she said.

“I’ve heard from Rhode Islanders about how difficult it can be for patients battling serious, advanced illnesses to get the care and respect they want,” said Whitehouse.

Whitehouse noted that “We can do better by these patients. 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 models of coordinated care that focuses on the full person. Payment systems should reward providers for honoring patients’ own preferences for their care.

As Dr. Atul Gawande, surgeon and author of the New York Times best-selling book, “Being Mortal, mentioned in his testimony, “people with serious, potentially life-limiting illnesses face substantial and increasing suffering, particularly during the last year of life. Medical care today typically exacerbates this suffering, often without any benefit of lengthened life. We have an opportunity to change this.”

“The goal is not a good death. Instead, the goal is to have as good a life as possible all the way to the very end,” say Dr. Gawande.

In her testimony, Amy Berman, a nurse and senior program officer at the John A. Hartford Foundation, who is living with stage IV inflammatory breast cancer stand stressed the importance of palliative care, which is designed to improve the quality of life for patients with serious illness.

“Palliative care is the best friend of the seriously ill,” said Berman, “Studies have shown that when palliative care is added at the beginning of a serious illness that people feel better and live longer.”

Finally, Dr. Kate Lally, Chief of palliative care for the Providence-based 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, urged Congress to consider legislation that would improve the quality, not just the quantity, of life of the seriously ill. “I feel blessed to do this work, and to be able to reflect with my patients on the life they have lived, their joys and regrets,” she said. “I feel I am able to share some of the most sacred moments of their life, and be at their side as they consider what is most important to them in their limited time.”

“The healthcare system as a whole, as well as Medicare and Medicaid, need to face growing expectations about how people with serious or terminal illnesses are treated,” said AARP Rhode Island State Director Kathleen Connell. “We are investing in prevention and early treatment and getting better results. Ultimately, however, people will still face serious illness and palliative care. Person-centered care is the proper prescription, and we must strive to make sure that it’s available. We need to be vigilant when it comes to supporting a healthcare environment in which patients with serious illness feel they are well informed and can remain properly in control of their options. And while families still tend to avoid these discussions in advance, when the time is right proper guidance makes a world of difference.

“People form especially strong opinions about decisions made that may prolong their existence, but add little to the quality of lives and, in fact, can prolong suffering,” Connell added. “Conversations on this phase of life are critical and we applaud Senators Collins and Whitehouse for their contribution to this dialogue.”

Legislation to Support New Models of Coordinated Care

The thrust of Whitehouse’s legislative proposal is to promote better coordination between health care providers, and place greater emphasis on the care 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.”

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. Currently CMS’s regulations force patients to choose one or the other for their terminal illness. Patients would be able to also 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.

Whitehouse’s legislative proposal would also 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. Finally, it would also 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.

According to Tom Koutsoumpas, Co-Chair of the Coalition to Transform Advanced Care’s (C-TAC) Board of Directors, Whitehouse’s legislative proposal 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.”