In a landmark agreement, two of the nation’s most prominent hospitals are pledging to spend millions of dollars to resolve complaints that ill-suited equipment and sometimes-indifferent medical workers make disabled patients feel unwelcome.
Massachusetts General Hospital and Brigham and Women’s Hospital, Harvard-affiliated teaching facilities, promised to scour every ward for evidence of physical barriers and equipment inaccessible to the disabled. Staff members will undergo training to make sure they understand – and respond to – the needs of patients who have trouble walking, seeing, or hearing.
The hospitals’ financial commitment is substantial: The Brigham expects to spend $12 million on equipment and other capital improvements over the next six years; Mass. General does not have an estimate of how much it will devote, but the hospital’s president said the figure would be in the millions.
The money will be used, in part, to buy exam tables, mammography units, and X-ray machines to better accommodate the disabled. It is also expected that the hospitals will purchase lifts and scales that can weigh patients in wheelchairs.
The accord with disabled patients, expected to be formally announced this morning, marks a signal moment for activists and the medical centers alike.
For patients such as Pamela Daly, who was paralyzed in a car accident 37 years ago, the agreement is an acknowledgement of the disrespect and discomfort they have endured. As part of the compact, patients will be directly involved in approving consultants and reviewing blueprints for improvements. “We finally get to have a voice,’’ Daly said.
For the hospitals, it is an explicit recognition that they have failed to do enough to accommodate the region’s disabled children and adults, who now account for 15 percent of the state’s population. And it also means they are spared the humiliation and expense of lawsuits that activists elsewhere filed to force improved access to medical care.
As a further sign of their importance, negotiations between disabled activists and the hospitals, the flagships of Partners HealthCare, were tracked closely by top state officials.
“It’s hugely significant because these are major hospitals in a major hospital system,’’ said Jean McGuire, assistant secretary for disability policy and programs in the state’s Executive Office of Health and Human Services. “This is a strategy that is good for everybody because any of us can become disabled, and making sure we can find accessible and responsive healthcare is something we want to see everywhere.’’
The genesis of the agreement traces back at least six years, to a lawsuit filed by disabled transit riders against the Massachusetts Bay Transportation Authority.
As part of that action, Greater Boston Legal Services and the Boston Center for Independent Living interviewed hundreds of people. Over and over again, disabled passengers told of how, after encountering barriers on the T, they arrived at medical appointments only to confront more frustration.
It was happening in hospitals all over the city, said Dan Manning, director of litigation for Greater Boston Legal Services, which provides free legal aid. Activists decided to single out Mass. General and the Brigham, though not because their failing was more egregious.
“These hospitals are leaders within the medical community, both locally and nationally,’’ Manning said. “We hope this will have an impact far beyond Boston.’’
Last fall, in a no-frills conference room in Downtown Crossing, disabled patients and some of the most powerful leaders in healthcare came face to face. It was then that the presidents of the hospitals – Dr. Peter Slavin of Mass. General and Dr. Gary Gottlieb of the Brigham – met Daly, who told them about her experiences at Mass. General.
There was the time when she needed to be weighed so that she could receive the right amount of chemotherapy to treat breast cancer. But there was no scale available to weigh patients in wheelchairs. Another time, she went to the hospital for a standard test of bone fitness. She needed to get onto an exam table.
“They said, ‘Can you walk?’ I said, ‘No, I can’t.’ And they said, ‘You sure you can’t walk?’ ’’ Daly recalled in a recent interview. Finally, an exasperated staff member blurted out, “ ‘Well, I don’t know what we’re going to do. . . . you’ll have to reschedule.’ ’’
Instead, her endocrinologist was summoned from across the street to lift her onto the table.
“I was,’’ Daly said, “really shocked and scared.’’
A statement from Stacy Berloff, who was hospitalized the day of the meeting, was read to the hospital leaders. In it, Berloff, beset with neurological impairments, explained that during several stays at the Brigham, she could not get a room with a handicapped-accessible toilet.
On another occasion, she was branded “uncooperative’’ because she could not hoist herself from her wheelchair for a test. “They were yelling at me,’’ Berloff recounted yesterday. “I was just dumbfounded. You’re upset at me because your equipment’s not accessible?’’
As he listened to the stories that day, Gottlieb grew “very upset,’’ he recalled.
“We are all to be judged by what we do for those who need us the most,’’ he said. And, in these cases he acknowledged, his hospital had failed. “Frankly, I accept every major failing of this hospital as my own.’’
Although the activists said they never threatened to sue, both sides acknowledge they worked against a backdrop of lawsuits in California and Washington, D.C., that had compelled changes at hospitals. In Boston, both sides were determined to avoid the legal fees and public relations headaches that inevitably stem from legal action.
The resulting covenant stipulates that the hospitals must report regularly on the progress they are making to patients and their advocates. If the hospitals and patients cannot resolve disagreements, the pact allows for the intervention of an arbitrator.
“It’s an agreement entered into voluntarily by all of us as a way of indicating our commitment to each other and to the populations that we’re serving,’’ Matt Fishman, vice president for community health at Partners, said last week during an interview also attended by activists.
“Sounds like we’re getting married,’’ quipped Bill Henning, director of the Boston Center for Independent Living.
“I think we did,’’ Fishman said.