The NY Times had a fantastic article about the difficulty in fulfilling a loved one’s final wish to die at home. Maureen Stefanides was the daughter of Joseph Andrey, a 91 one year old resident of a nursing home. Craning his neck, he sought the eyes of his daughter, who had promised to get him out of this place. “I want to go home, to my books and my music,” he said, his voice whispery but intense. He was gaunt now, warped like a weathered plank, perhaps by late effects of an old stroke, certainly by muscle atrophy and bad circulation in his legs. Her father had been discharged by a hospital to a nursing home, supposedly for rehabilitation, so many times that even she had lost count. The stays, long or short, had only left him weaker, harder to care for at home with a shrinking allotment of help from aides and more prone to the infections that sent him back to the hospital.
Now she was determined to fulfill her father’s dearest wish, the wish so common among frail, elderly people: to die at home.But it seemed as if all the forces of the health care system were against her — hospitals, nursing homes, home health agencies, insurance companies, and the shifting crosscurrents of public health care spending.
She had fiercely opposed his being discharged to anywhere but home, a small walk-up apartment in Manhattan that her parents shared for half a century before her mother’s death. Records would show that her father’s case let the nursing home collect $682.48 a day from Medicare, about five times the cost of a day of home care. Hospitals, eager to clear beds, increasingly sent patients to nursing homes. The nursing homes were often too short-staffed to reliably change diapers but still drew premium Medicare rates, ordering hours of physical therapy and other treatment that studies showed was often useless or harmful.
While Joseph Andrey’s daughter battled the health care system, a national panel appointed by the federally funded Institute of Medicine was preparing a sweeping critique of how the system handles just such cases. The report, “Dying in America,” released last month, calls for a fundamental overhaul of the country’s end-of-life care.
For most people, death does not come suddenly, the report points out. With 48 times as many people reaching 85 than a century ago, and triple the number who turn 65, the likely course of death is long and unpredictable. In the new demographic reality, the immediate family is older, too, often literally unable to do the heavy lifting for the long haul.
“We have these frail older people moving about in the medical-industrial complex that we’ve constructed,” Dr. Teno said. “It’s all about profit margins. It’s not about caring for people.” Many geriatric experts say that if the wasteful medical spending on this stage of life could be redirected, it could pay for all the social supports and services actually needed by today’s fragile elders and their families. Instead, public money has been shuffled in the same system, benefiting health care businesses but not necessarily patients.
A prime example is the abuse of short-term rehabilitation in nursing homes, improper charges that cost the public more than $1.5 billion a year, federal inspectors for the Department of Health and Human Services reported in 2012. Medicare will pay premium rates for up to 100 days of services in a nursing home to rehabilitate patients. While such efforts can be beneficial, government investigations and lawsuits document a pattern of excessive or fraudulent orders for such services, often just before death.
A nursing home is the only place to find coverage for 24-hour care. But the care itself often falls short. In an analysis this year, federal inspectors found one in three Medicare patients who went to a nursing home from a hospital suffered harm, including preventable infections and medication errors. Other national research confirms that pressure sores, falls and malnutritionare endemic in many nursing homes, and strongly linked to inadequate staffing. A 1987 law required enough staff to prevent such harms, but states’ enforcement has been weak in the face of a hugely profitable, politically powerful nursing home industry.
On arrival May 22 last year, Mr. Andrey was “alert and verbal,” with a good appetite, clinical notes said. Less than a week later, he was eating only half his food. On Day 12, he was found on the floor: He had fallen from bed, hurting his knee. By Day 14, when Medicare had spent nearly $10,000 on his care, a pressure sore was eroding the flesh of his right heel. Despite treatment, ulcers later covered his left buttock and feet. On some days he went hungry, he told his daughter. Rushed workers left his food tray on the air-conditioner, where he could not reach it. Several times, he fell out of bed trying. When physical therapy ended, the wounds became another reason for the institution to extend his stay, now costing Medicare $585.49 a day. His system, likely colonized by bacteria acquired in health care institutions, was breaking down. Demented, contracted, hurting — he had no quality of life, doctors said, urging hospice.
But as the hospital’s own social workers had explained, hospice benefits from Medicare came with a catch: Her father would lose all Medicaid home care. In home hospice, that would leave huge gaps, unless she could tend to him around the clock. The alternative was hospice in a nursing home. As she and her husband took turns at his side, Ms. Stefanides’s father lived on — one day, two days. Death came the third morning, before she arrived, on Feb. 1 of this year, three weeks before his 92nd birthday. The funeral home director told her the deep pressure ulcers on her father’s body were the worst he had ever seen. The records she obtained showed that in the last year of his life, his care cost at least a million dollars.
“He didn’t die in his bed, and that’s what he wanted,” she said. “I still feel that I let him down.”