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Study: Shift to Hospice Care Often Comes Too Late

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"This was not what I expected to see," Teno said. "We've done a good job improving the numbers of people receiving hospice care, but the pattern of care we see in this study suggests that hospice has become an add-on treatment to aggressive care."

Teno said there is "a complex set of reasons" why this is occurring. One reason can be a sudden change in health status that doesn't leave people time to prepare. Another reason is that people are referred late to hospice care. Patients may not understand their prognosis, she said, and they may have never had a discussion with their doctor about what is important to them.

Another issue is the way services are reimbursed. There is no question that ICU care and ICU doctors are reimbursed for their services. But Medicare doesn't pay for primary-care doctors or specialists to sit down with their patients and have discussions about end-of-life care. Teno said this type of care was initially included in the Affordable Care Act, but was removed during political negotiations when the bill was making its way through Congress.

The study also found that people with some conditions, such as chronic obstructive pulmonary disease or emphysema, were less likely to get hospice care than someone who had cancer.

Both Teno and Tinetti said the findings show that you need to advocate for yourself or your loved ones. Ask the doctor what the prognosis is. If it's your parent or spouse, talk to them about what's truly important to them. Do they want every measure to be taken or do they want to just be as comfortable as possible at the end of their lives?

"Often, the best way to get your loved one's wishes honored is to get hospice [care]," Teno said.

Tinetti added that there should be standards put into place for who receives ICU care.

"Why do we have to fill out 25 pages of forms to get hospice [care] or a skilled nursing facility, but not for ICU?" she said. "We need to start proactively thinking about ICU care, and what role it plays in the care of the critically ill."

More information

Learn more about hospice care from ElderCare.gov.

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