by Shannon Firth
Washington Correspondent, MedPage Today

WASHINGTON — “I feel like I’m dying and everybody is afraid to tell me.”

That’s what one patient told a nurse colleague of Kate Lally, MD, chief of palliative care at Kent Hospital in Warwick, R.I, which is part of the Care New England Health System.

Lally, who testified Thursday at a hearing of the Senate Special Committee on Aging, told MedPage Today that the lack of education about end-of-life discussions is the greatest barrier to person-centered treatment.

“We’re afraid to talk with patients. We’re afraid that if I say to you, ‘there are options other than chemotherapy,’ that is me, giving up on you,” she said.

“Medicine and society have failed to recognize that people have priorities in their life besides just living longer,” Atul Gawande, MD, MPH, author, journalist, executive director of Ariadne Labs and surgeon at Brigham and Women’s Hospital in Boston, told the committee.

“We have very strong evidence that when people get to articulate what the goals of their care are besides just survival, that they end up with care that is remarkably better on almost every dimension: suffering and well-being, overall physical function, costs, and also their length of life.”

Studies of terminally ill patients have shown that only one in three clinicians ask patients about their goals in the last stages of life, he said. In addition to lack of training, cultural taboos and regulatory hurdles often get in the way of patients getting the care they want.

When she was diagnosed with stage IV breast cancer in 2010, Amy Berman,RN, senior program officer at the John A. Hartford Foundation in New York City, met with two oncologists. Berman was also a witness at Thursday’s hearing.

The first recommended a mastectomy, and the most intense chemotherapy available plus radiation, but never asked Berman about her own wishes and goals.

Patients are often given direction rather than being asked what’s most important to them, Berman said. As a result, patients are also frequently ignorant about their true prognosis, she said, citing a 2012 study in Health Affairs that found two-thirds of providers gave patients a “rosier” prognosis than what they believed to be true.

The second oncologist Berman met with asked about her wishes and Berman told her, “I want to go good, good, good, then drop off the cliff.” A path she describes as “The Niagara Falls Trajectory.”

More than 5 years later, Berman, who chose the least burdensome treatment options with the fewest side effects, is following the trajectory she hoped for.

“My care is the exception,”she said.

Health systems like Care New England, where Lally works have introduced specialized training so physicians can better help patients like Berman by tailoring care.

Beyond training deficiencies, regulatory barriers may prevent clinicians from helping patients get the kind of care they want.

Sen. Sheldon Whitehouse (D- RI.) said he planned to introduce a bill that would revise Medicare’s hospice eligibility requirements so that people electing hospice could continue to receive curative care. Whitehouse’s bill would also eliminate a requirement for 3-days hospitalization before being admitted to a skilled nursing facility. Additionally, the bill would ease eligibility for home care.

Whitehouse said his bill will give the Centers for Medicare and Medicaid Services the opportunity to test pilot programs in palliative and hospice care.