Although most people would prefer to die peacefully in a comfortable setting, a new study shows that almost one in three spend some time in the intensive-care unit of a hospital in their last month of life while a similar number only get hospice care a few days before dying.
And 40 percent of those late hospice care referrals come right after an ICU stay, the researchers noted.
"People end up with these very short stays in hospice [care]," said study author Dr. Joan Teno, a professor of health services, policy, and practice at Brown University's Warren Alpert Medical School, in Providence, R.I. "Those short stays are difficult on the patients and the families. They don't benefit from hospice's psychosocial support for patients and their families."
Another expert put it this way: "I think what has happened is that we're using hospice [care] as a last resort. It's something we do when people have gotten so bad that they can't respond to any possible intervention," said Dr. Mary Tinetti, chief of geriatrics and professor of internal medicine and public health at the Yale University School of Medicine and Yale New Haven Hospital.
"Hospice [care] should be used as a treatment for those who are focused on quality of life," said Tinetti, who is also the co-author of an editorial accompanying the study. "Some people are going to want to access to palliative care earlier in the process."
The findings were published in the Feb. 6 issue of the Journal of the American Medical Association.
The study reviewed a random sample of 20 percent of fee-for-service Medicare beneficiaries who died in 2000, 2005, and 2009. Each year, fewer people died in the hospital, according to the study. In 2000, 32.6 percent died in the hospital. In 2005, 26.9 percent died under hospital care, and 24.6 percent did so in 2009.
At the same time, however, the use of the intensive-care unit in the last month of life increased for each time period. In 2000, 24.3 percent of people were in the ICU in their last month. By 2005, that number was 26.3 percent, and in 2009 it had risen to 29.2 percent.
During that same period, the use of hospice care also increased significantly. In 2000, 21.6 percent of people received hospice care at the time of their death. That number was 32.3 percent in 2005 and 42.2 percent in 2009.
In 2009, however, 28.4 percent of hospice care was for three days or less, according to the study. And 40 percent of those short hospice stays came on the heels of an ICU stay.
"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."