Whitehouse Pushes for Medicare to Pay for Person-Centered Care

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.”

Santaniello Gets AARP’s Most Prestigious Award

Published in Pawtucket Times, December 6, 2013

Look for hundreds of AARP members to gather today at this year’s Andrus Awards noon luncheon at the West Valley Inn, in West Warwick, to recognize their own, at the aging group’s annual Andrus Awards ceremony.

Norma Santaniello, 81, gets the Rhode Island AARP Chapter’s most prestigious volunteer award for age 50 and older volunteers, that is the 2013 AARP Rhode Island Andrus Award for Community Service. It’s the aging advocacy groups most visible state volunteer award for community service

“This award acts as a symbol to the public that we can all work together for positive social change,” states . “AARP has long valued the spirit of volunteerism and the important contributions volunteers make to their communities, neighbors, and the programs they serve.”

Connell says the North Providence resident has worked with the nonprofit’s chapters and community partners, reinforcing the organization’s strategic priorities and being a voice to the public. “She is a strong advocate for community service and works with the volunteers on projects such as the RI Community Food Bank and at various health and fitness fairs.”

Santaniello follows a very distinguished group of award recipients. Previous Andrus Award winners are Sarah Gauvin, Virginia Tierney, Anna Prior, Ann Gardella, Melvoid Benson, John O’Hara, Rita Wood, Ed Drew, Richard Ryan, Jorge Cardenas and Catherine Graziano

The December 6 Andrus Awards Luncheon is very festive and upbeat regardless of “what is going wrong in the world or otherwise leaving us feeling unsettled,” says Connell, noting that she looks forward to attending this annual event because “it is a time to acknowledge volunteerism and public service on many levels.

AARP Rhode Island’s Andrus Awards Luncheon allows the organization to recognize people for their community service throughout the year. “It is indeed an honor to know each and every one present, along with many who are absent,” notes Connell, stressing that they represent an “even greater network of volunteers and advocates who carry on Ethel Percy Andrus’s dream of a productive and fulfilling life for people whose knowledge, passion and energy remains indispensable in our neighborhoods and in towns and cities all across our great state.”

AARP Award Recognizes Ethel Percy Andrus’s Advocacy

According to Connell, her group’s top award is given to recognize and honor AARP founder Ethel Percy Andrus, she “embodies all that AARP stands for. Once Andrus retired in 1944 from her position as Los Angeles high school principal in 1944, she stepped into a new career, one that ultimately would have a major impact on the nation. “She became an activist and organizer on behalf of other retirees and older Americans, fighting to improve their financial security, their health care and other services that they need, says AARP Rhode Island’s State Director.

The former long-time educator, who served as the first woman high school principal in California, never married and was childless, had retired so that she could care for her mother, who was in poor health. Despite decades of working, Andrus was entitled to a pension of just $60 a month, around $750 in today’s dollars. She had enough money to financially survive, but she realized that many of her older colleagues were not so fortunate, living off incredibly small pensions.

For Andrus, her commitment to become a change agent for society was fueled by learning the indignity faced by a former colleague due to lack of retirement income was forced to live in a chicken coop in a small town outside Los Angeles. This led to Andrus to become active in the California Retired Teachers Association and in 1947 she founded the National Retired Teachers Association. This group would ultimately lead to the creation of AARP in 1958, now considered the nation’s largest aging advocacy group.

Connell notes that Andrus worked to shift the nation’s perception of aging. As she once explained, “Old age is not a defeat, but a victory, not a punishment, but a privilege.” The aging advocate urged her fellow retirees “to be as active as possible — to pursue new passions, to travel and see the world, and, most of all, to continue to use the skills and experience developed over a lifetime to serve their communities.”

The Ojai, California resident continued to work long hours and travel to promote AARP until her death from a heart attack at age 83 in 1967, the same year that membership in AARP reached 1 million. Today, AARP’s membership serves over 40 million older people.

Like the AARP Rhode Island Chapter, recipients across the nation are to receive the distinguished award, named for Andrus, recognizing their ability to enhance the lives of AARP members and prospective members, improve their community or for which the work was performed, and the inspiration they give other volunteers.

Empowering Seniors

For 29 years, juggling a demanding job that provided administrative support for Providence School Principals combined with raising two young children left Santaniello with little time after hours to join community organizations. One year shy of age 60, she would take retirement, noting that “I had worked long enough, had a pension, and just wanted to do different things.”

Santaniello remembers her volunteer work began when she was invited to join the State Legislative Committee some 18 years ago. The retired Providence School Department employee, joined the AARP North Providence Chapter taking the helm of its Legislative Committee, ultimately being appointed to AARP Rhode Island’s State Legislative Committee. In these positions she has written numerous letters to Congressional lawmakers on aging advocacy issues and has testified many times on Smith Hill before the General Assembly on a multitude of aging issues, including care giver issues, long-term care, Social Security, and fair market pricing for prescription drugs.

As the years rolled by, Santaniello would continue to put her energy into her AARP duties. But, she also would find time to teach fifth graders about religion at her local parish, the Presentation of the Blessed Virgin Mary in North Providence, serve as a board member for Marieville’s Community Police program and to even became certified to be on FEMA’s Emergency Response Team in the Ocean State. That’s not all.

Santaniello is actively involved in the Department of Elderly Affairs’ Senior Help Insurance program, assisting seniors to get the best insurance plan for their specific needs. “Right now I am very concerned about United Health Care dropping physicians,” she says.

Besides receiving the Andrus Award, Santaniello notes she has also accumulated a few others over the years. She received the AARP Rhode Island’s Outstanding Team member Award in both 2000 and 2004 and the nonprofit group’s Life Time Chapter Education Award in 2010.

With today’s luncheon ceremony in her thoughts, Santaniello admits, “it’s quite an honor, getting the highest award that AARP can bestow.” She seems amazed that one should get this award for just doing something you like. “Obviously, if I did not enjoy what I was doing I would not have been around so long,” she says.

As to staying active in her early eighties, Santaniello hopes that her older friends will find volunteer activities that are worthwhile to invest their time and energy. “We just have to know what is going [in the world] or we will fade away, she said.

Like Santaniello, older Rhode Islanders might consider following her very active life style. Become a volunteer in your community. According to the Washington, DC-based Corporation for National & Community Service, a growing body of research details that older volunteers have lower mortality rates, less depression, fewer physical limitations and higher levels of well-being. Older volunteer’s can tackle community problems, making the world a better place for their children and grandchildren. Being a volunteer might just well be your fountain of youth.

At today’s Andrus Awards noon luncheon, here are other AARP members who will be recognized for the 2013 Volunteer Leader of the Year: Advocacy; Doris Haskins (Advocacy): Julia Valles (Community Presence); Lourdes Pichardo (Maria Matias Award); Susan Sweet (Advocacy Education); and Jorge Cardenas (Volunteer Engagement).

Herb Weiss, LRI ’12, is a Pawtucket writer who covers aging, health care and medical issues. He can be reached at hweissri@aol.com.