Senators Collins, Whitehouse Hold Hearing on Care Models that Relieve Suffering, Respect Patients’ Choices in the Face of Serious Illnesses

Click HERE for a high resolution photo of Atul Gawande at today’s hearing

Click HERE for a copy of Senator Collins’ opening statement

Click HERE for a copy of Senator Whitehouse’s opening statement as prepared for delivery

Washington, D.C.— “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,” was the message Dr. Atul Gawande, surgeon and author of the New York Times best-selling book, “Being Mortal,” delivered today in testimony to the Senate Special Committee on Aging.

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 models of care that are helping people with serious illness and their families.

Today, approximately 90 million Americans, more than one in four, lives with a serious illness. These numbers will increase as the population ages. As Dr. Gawande noted 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.”

U.S. Senator Susan Collins, Chairman of the Senate Special Committee on Aging, conveyed the importance of advance care planning conversations to a patients’ physical, emotional, social and spiritual well-being. 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.

“Today’s hearing featured powerful testimony 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,” said Senator Collins. “Federal policies must then 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.” Collins also told the story of a personal 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.  “Legislation I introduced today would free Medicare patients with advanced illnesses to get the care that fits their wants and needs.  Thank you to Dr. Atul Gawande, Rhode Island’s Dr. Kate Lally, and Amy Berman for a discussion on putting patients first, honoring their wishes, and providing the best care possible.”

Some of the most powerful testimony came from Amy Berman, a nurse and senior program officer at the John A. Hartford Foundation, who is living with stage IV inflammatory breast cancer and espoused 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.”

In medium and large hospitals with more than 50 beds, the number with palliative care teams more than doubled in the last fifteen years, increasing from 658 hospitals in 2000 to 1,700 hospitals in 2015.  Moreover, hospice participation has nearly doubled in the last fifteen years, with more than 1.3 million Medicare beneficiaries electing hospice services in 2014, compared to 650,000 in 2000.

More than one quarter of beneficiaries, however, enroll in hospice in their last week of life, which raises concerns about quality of care for beneficiaries who only receive hospice care for a short period of time.  It also raises questions about how current federal policies affect patients’ use of palliative and hospice care.

Dr. Kate Lally, Chief of palliative care for Care New England Health System in Providence, Rhode Island, 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.”

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