How we die, and how we finance long-term care

From New Old Age, one of the NYT blogs.

Not long ago Dr. Joanne Lynn, a geriatrician who pulls no punches in her frequent critiques of America’s sorry system of end-of-life care, looked out from the dais of a Washington, D.C., ballroom at a sea of middle-aged faces: health policymakers, legislative staff, advocates for the aged and for family caregivers — an audience of experts.


“How many of you expect to die?” she asked.

The audience fell silent, laughed nervously and only then, looking one to the other, slowly raised their hands.

“Would you prefer to be old when it happens?” she then asked.

This time the response was swift and sure, given the alternative.

Then Dr. Lynn, who describes herself as an “old person in training,” offered three options to the room. Who would choose cancer as the way to go? Just a few. Chronic heart failure, or emphysema? A few more.

“So all the rest of you are up for frailty and dementia?” Dr. Lynn asked.

On the screen above the dais, she showed graphs describing the three most common ways that old people die and the trajectory and duration of each scenario. Cancer deaths, which peak at age 65, usually come after many years of good health followed by a few weeks or months of steep decline, according to Dr. Lynn’s data. The 20 percent of Americans who die this way need excellent medical care during the long period of high functioning, she said, and then hospice support for both patient and family during the sprint to death.

Deaths from organ failure, generally heart or lung disease, peak among patients 10 years older, killing about one in four Americans around age 75 after a far bumpier course. These patients’ lives are punctuated by bouts of severe illness alternating with periods of relative stability. At some point rescue attempts fail, and then death is sudden. What these patients and families need, Dr. Lynn said, is consistent disease management to head off crises, aggressive intervention at the first hint of trouble and advance planning for how to manage the final emergency.

The third option, death following extended frailty and dementia, is everyone’s worst nightmare, an interminable and humiliating series of losses for the patient, and an exhausting and potentially bankrupting ordeal for the family. Approximately 40 percent of Americans, generally past age 85, follow this course, said Dr. Lynn, and the percentage will grow with improvements in prevention and treatment of cancer, heart disease and pulmonary disease.

These are the elderly who for years on end must depend on the care of loved ones, usually adult daughters, or the kindness of strangers, the aides who care for them at home or in nursing facilities. This was my mother’s fate, and she articulated it with mordant humor: The reward for living past age 85 and avoiding all the killer diseases, she said, is that you get to rot to death instead.

Those suffering from physical frailty, as she was, lose the ability to walk, to dress themselves or to move from bed to wheelchair without a Hoyer lift and the strong backs of aides earning so little that many qualify for food stamps. These patients, often referred to as the old-old, require diapers, spoon-feeding and frequent repositioning in bed to avoid bedsores. Those with dementia, most often Alzheimer’s disease, lose short-term memory, fail to recognize loved ones, get lost without constant supervision and eventually forget how to speak and swallow.

What all of these patients need, Dr. Lynn said, is custodial care, which can easily cost $100,000 a year and is not reimbursed by Medicare. The program was created in 1965 when hardly anyone lived this long.

“We’re doing this so badly because we’ve never been here before,” Dr. Lynn said. “But the care system we’ve got didn’t come down from the mountain. We made it up, and we can make it up better.”