A place not made for us


By Al Normanalnorman_headshot

In his New York Times bestselling book, “Being Mortal,” surgeon Atul Gawande explains the rise of nursing homes in America starting in the 1950s.

“Hospitals couldn’t solve the debilities of chronic illness and advancing age,” he wrote, “and they began to fill up with people who had nowhere to go.”

The hospitals lobbied Congress for funding “to enable them to build separate custodial units for patients needing an extended period of “recovery.”

“That was the beginning of the modern nursing home,” Gawande explained. “They were never created to help people facing dependency in old age. They were created to clear out hospital beds – which is why they were called ‘nursing’ homes.”

Sixty years later, Gawande said, “the core problem persists. This place where half of us will typically spend a year or more of our lives was never truly made for us.”

His description of life in a nursing “home” for one of his friends will resonate with many readers: “All privacy and control were gone. She was put in hospital clothes most of the time. She woke when they told her, bathed and dressed when they told her, ate when they told her. She lives with whomever they said she had to. There was a succession of roommates, never chosen with her input and all with cognitive impairments. Some were quiet. One kept her up at night. She felt incarcerated, like she was in prison for being old.”

Over the past 36 years of my working life I have struggled to help people avoid this social imprisonment, and live at home with dignity and independence. People in the home care profession are freedom workers. They believe that all care must be built to maximize autonomy and personal control.

Whether it is in a hospital setting, a “rehabilitation” center, or a nursing facility, the “patient” is not in control. From the moment you put on that “johnny,” you feel your personhood slipping away. A nursing facility owner once told me: “I can institutionalize people within a matter of weeks. I can transfer them from being a fairly independent, ambulatory person living on their own home schedule, to being wheelchair-bound, Depends-wrapped, toileted and eating on our schedule, and in bed when we tell them.” It’s like resetting their internal clock and life rhythms.

We have done well in Massachusetts to “bend the curve” on the number of patient days in nursing facilities by more than a third since the year 2000. We have a projected 15,000 empty nursing home beds today. But we still over-institutionalize the elderly.

According to the Massachusetts Health Policy Commission, in 2012, 36 percent of all hospital inpatients discharged on Medicare in the commonwealth went into a nursing facility. In 2013, Medicare post-acute spending in Massachusetts was $1.04 billion on institutional care, five times greater than the $209 million on home health spending. The mean spending per user in a skilled nursing home was $15,970, versus $3,242 per home health user.

Nursing facilities still account for half of Medicare post-acute care spending nationally. The Massachusetts Health Policy Commission concluded that “more work is needed to develop guidelines for patient discharge planning.”

One of the most obvious tools we have to slow the conveyor belt from hospital-to-nursing facility is already state law—but it is virtually ignored. In section 9 of Chapter 118E of the General Laws, it says that “A person seeking admission to a long-term care facility paid for by MassHealth shall receive pre-admission counseling for long-term care services, which shall include an assessment of community-based service options. A person seeking care in a long-term care facility on a private pay basis shall be offered pre-admission counseling.”

In practice, most hospitals and doctors are totally unaware of this “pre-admission counseling” option, and consumers know even less. Elders I speak with never had a counseling session about their home care options.

We continue to imprison older people – and the disabled – in buildings that are devoid of any of the comfort and familiarity of home. Consumers say they want to be home, but we ignore them for our own convenience and ease of management. We rob them of control and autonomy, when all they long for is the dignity to remain an individual.

Al Norman is the executive director of Mass Home Care. He can be reached at info@masshomecare.org or at 978-502-3794.