Newspaper article

Late-in-Life Care: Fragmentation and Complexity for the Chronically Ill

Newspaper article

Late-in-Life Care: Fragmentation and Complexity for the Chronically Ill

Article excerpt

This is the first in an occasional series on late-in-life health care -- when chronic illness or a constellation of medical problems can cause a cascade of new needs, complications and worries. This yearlong examination of issues faced by such patients and their families is funded through a regrant by Allina Health from the Robina Foundation. It is conducted in conjunction with media partners TPT and Ampers.

A TPT documentary, "Late Life: Redefining Care," will air Tuesday, March 18, at 9 p.m. on Channel 2.

If this day is typical, 106 Minnesotans will die before midnight. Of those passings, 16 will be unexpected. Most of the other 90, though, will represent the sad culmination of lingering diseases.

Given a choice, we would opt to live a long, healthy life and then be one of the 16 -- dying suddenly. But those are the lucky few.

When the Grim Reaper makes a call in Minnesota, the odds are overwhelming that it will come in the guise of cancer, heart disease, diabetes and other ailments that sap life slowly. And whether those diseases strike a younger person or creep in with age, they almost always cause a period of frailty.

We deploy mighty medical arsenals to fight the specific diseases, spending billions every year. Much of that investment comes as last- ditch, life-saving attempts in patients who are near death.

A profoundly fragmented, confusing system

Meanwhile, fragile individuals who have months or years to live find themselves in a profoundly fragmented and confusing health- care system where they too often are treated as disease cases rather than individuals with personal wishes and practical needs.

"We have a health-care system that is great if you have a sudden heart attack or you come down with pneumonia," said Dr. Diane Meier, who directs the Center to Advance Palliative Care at the Icahn School of Medicine at Mount Sinai in New York.

"But it's completely useless during the 10 years that you are living with progressive chronic disease and you need help at home," said Meier, who is also a national adviser to Allina Health's Robina LifeCourse Project, one of several efforts under way nationwide to test models for delivering more supportive, whole-person care to seriously ill patients and their families.

Where are the handymen, advocates and rides?

A weakened woman who fell down a flight of stairs could get thousands of dollars worth of emergency-room treatment. But could she get a handyman to install a hand rail on her stairway?

A man with multiple chronic diseases could see a dizzying array of specialists. But could he and his family get help navigating that system and advocating for their own wishes?

A doctor could prescribe drugs that cost more than a car. But could the patient get transportation to the clinic?

Too often, the health-care system has no answers to such questions. The system evolved to treat episodes of disease, not to provide comprehensive care during the years that patients are chronically ill, say advocates for the growing ranks of frail, late- in-life patients.

U.S. lags in spending on supportive services

While the United States spends more on health care than other developed countries, it spends far less on related social services.

Other countries in the Organisation for Economic Co-operation and Development (OECD) provide an average of $2 worth of supportive services for every dollar spent on health care. That is twice the amount the United States spends per health-care dollar, according to analysis of OECD data by Prof. Elizabeth Bradley of the Yale Global Health Leadership Institute.

Increasingly, health-care experts point to that disparity to explain the reasons that the United States lags behind other countries in life expectancy and other key health measures despite its enormous health-care investments.

Thus, while doctors pull out all the stops for individual medical interventions when life is threatened, ways of helping people deal with the myriad day-to-day needs posed by chronic illness or multiple medical problems are rarely built into the system. …

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