Forced to Choose: Exploring Other Options - NYTimes.com

I wrote last week about the poor choices facing patients, most very old and within six months of death, who need nursing home care after a hospitalization.

Medicare will pay for hospice, the acknowledged gold standard for those at the end of life and their families, and it will also pay for skilled nursing (known in this universe as the ?sniff? benefit, for Skilled Nursing Facility or S.N.F.). But only rarely will it cover both at the same time, which creates a financial bind.

Rather than pay hundreds of dollars a day out of pocket for room and board in a nursing home, most families opt for S.N.F. coverage. But they pay a price in other ways: they lose the visits by nurses and aides and social workers, the comfort care, the pain relief and the spiritual support that can make hospice such a godsend, whether patients are at home or in nursing homes.

The study I wrote about, by a team mostly based at the University of California, San Francisco, found ongoing repercussions from this forced decision. People were much more likely to die in hospitals or nursing homes when they used the S.N.F. benefit. Though studies repeatedly find that most people would prefer to die at home, only 11 percent did. But those who did not use S.N.F. were far more likely to be enrolled in hospice ? and 40 percent of them died at home.

On the other coast, meanwhile, researchers in Providence, R.I., and Boston exploring some of the same issues have documented still other problems when people nearing death use nursing homes.

This study, published recently by The Journal of the American Geriatrics Society, looked specifically at more than 4,300 patients with advanced dementia who died in nursing homes in 2006 and used the S.N.F. benefit within 90 days of their deaths. About a quarter also had hospice care, either at the same time (permitted only when someone has both a terminal condition and another diagnosis, as when a dementia patient also breaks a hip) or before or after they used S.N.F.

Why look at patients with severe dementia? ?I tried to focus on the most vulnerable part of the nursing home population,? said the study?s lead author, Susan C. Miller, a health services researcher at Brown University. ?They?re almost totally dependent.?

The whole purpose of Medicare?s paying for skilled nursing, recall, is to help patients get stronger and return home, or at least to improve their health. But physical therapy, for instance, may serve little purpose for those who are bed-bound, who are totally incontinent, who can?t feed themselves. ?These are people who are on a decline,? Dr. Miller said. ?They?re not going to get better.?

Yet they received a lot of medical interventions compared to those in hospice care. Those using S.N.F. were significantly more likely to receive feeding tubes, intravenous fluids, injections and medications ? none of which can stop or slow dementia, of course, or are likely to increase quality of life.

?I consider these treatments very aggressive for this group of patients,? Dr. Miller said. Hospice care, on the other hand, lowered the odds of dying in a hospital.

?There needs to be some kind of combined benefit, hospice or palliative care while people are receiving skilled nursing,? Dr. Miller concluded. Otherwise, ?there are incentives to give them care they really shouldn?t be receiving.?

People in palliative care and hospice have complained about this restriction for years, and they may want to keep complaining. The Affordable Care Act calls for a demonstration project of ?concurrent care,? a three-year experiment allowing up to 15 hospice programs around the country to enroll patients who can also continue to receive all the other services that Medicare covers, including skilled nursing.

Afterwards, an independent evaluation is supposed to determine whether people who are old and ill and close to death can benefit from having hospice and other services together and whether that may even save Medicare dollars.

But the statute doesn?t set a target date, so who knows when or whether this experiment will happen? Too bad, because a lot of patients and families would like to know the answer.

Paula Span is the author of ?When the Time Comes: Families With Aging Parents Share Their Struggles and Solutions.?

Source: http://newoldage.blogs.nytimes.com/2012/12/03/forced-to-choose-exploring-other-options/

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