Why it’s so hard to die in peace

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For those of us who had hoped that American attitudes toward death were shifting in ways that would promote a wider reconstruction of the health-care system, there’s discouraging news from Health Affairs, the preeminent journal of health policy. It devotes its latest issue to “end-of-life” care and finds that — at least so far — the power to make health care more compassionate and cost-effective is limited.

That was the vision. Americans would become more realistic about death. Through “living wills,” they’d reject heroic — often futile — treatment to keep them alive. Health spending would be lower (by one estimate, a quarter of Medicare spending occurs in the last year of life). People would die with dignity. They’d be spared needless suffering.

Superficially, the vision seems to be triumphing, according to the 17 studies in Health Affairs. By one study, a third of American adults — and nearly half those 65 and older — have some sort of living will. From 1999 to 2015, the share of Americans who died in hospitals dropped from more than half to 37 percent. Over the same period, the number dying at home or in a hospice rose from less than a quarter to 38 percent. Moreover, at 8.5 percent of health costs, spending in the last year of life is lower in the United States than in some other countries.

But on inspection, the gains seem less impressive. The share of people with living wills has remained stuck for six years. According to another study in Health Affairs, the increase in hospice care is not substituting for expensive hospital care but adding to it. Said the study by Melissa Aldridge of Mount Sinai hospital in New York and Elizabeth Bradley of Vassar College:

“What has emerged [is] a relatively new pattern of hospice use. . . . Hospice enrollment [has become] an ‘add-on’ in health care after the extensive use of other health care services and within days of death.”

Patients receive expensive care until nearly the end, when they’re switched to hospice care. This obviously limits the potential for reducing costs and for relieving patients’ suffering. In addition, spending for the last year of life, though significant, is still a small share of total spending, refuting the argument that the high cost of dying explains why U.S. health care is so costly.

“We found that U.S. health spending [during the last year of life] was less than one-tenth of total U.S. health care spending [8.5 percent] and thus cannot be the primary cause of why U.S. health care is so much more expensive than care in other countries,” concluded another study in Health Affairs headed by Eric French of University College London.

(The fact that the effect on Medicare is much larger reflects simple arithmetic: Because Medicare represents only about a fifth of total U.S. health spending, the spending in the last year is being compared with a smaller base.)

None of this means that end-of-life care can be ignored. Indeed, the problems will almost certainly worsen, because much care-giving is by families and friends. Already, 29 percent of the adult population — two-thirds of them women — consider themselves caregivers.

As the population ages, the burdens will grow. In 2010, the ratio of potential caregivers (people 45 to 64) to those aged 80 and older was 7-to-1; by 2030, it’s projected to be 4-to-1. Alzheimer’s cases are increasing. Spending pressures on Medicare and Medicaid will intensify.

Just whether the persistence of high-cost care reflects good medicine, a deep human craving to cling to life, or both is unclear. But the rhetoric about “end-of-life” care has changed more than the reality. To the question — Can we die in peace and with dignity? — the answer is “not yet.”

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