In 2008, Dr. David Goodman’s sister had advanced cancer and was preparing for death. She died during a medical procedure the day before she was set to enter hospice care.
Instead of being given the chance for comfort, she went through what’s known as “aggressive care,” unnecessary medical procedures aimed at extending a person’s life.
Goodman—director of the Center for Health Policy Research and a professor at the Geisel School of Medicine at Dartmouth College—recently co-authored a study about the kind of care people who end up in hospice receive. He said the same aggressive care his sister experienced is the norm at many medical centers in the U.S.
Goodman’s sister was one of the ever-increasing number of people with terminal illnesses who enter hospice care three or fewer days before their death. From 2000 to 2009, the rate rose from 4.6 percent to 9.8 percent, according to the study.
“Poor communication leading to unwanted care is epidemic in many health systems,” Goodman said in a press release. “The patterns of care observed in this study reflect needlessly painful experiences suffered by many patients, including my sister, and other friends and family members of the research team.”
Goals vs. Realities of Hospice Care
The philosophy of hospice care is to provide comfort so that those at their end of their lives can get through their final days, weeks, or months as alert and pain-free as possible.
However, the study out of Brown University, published in the Journal of the American Medical Association, shows that’s not always the case, as many people undergo unnecessary medical procedures mere days before their deaths.
Researchers analyzed the Medicare fee-for-service records of more than 840,000 seniors who died in 2000, 2005, or 2009. They looked at where seniors died, which medical services were provided during their last 90 days of life, and for how long they received that care.
Hospice as Mainstream Therapy
Hospice care is becoming a much more mainstream practice. However, the study shows that the current fee-for-service healthcare model deprives many seniors of the comfort and psychological support that hospice is meant to provide.
Researchers found that while the rate of seniors in hospice care increased from 21.6 percent in 2000 to 42.2 percent in 2009, the number of those people in intensive care during the last month of their lives increased from 24.3 percent to 29.2 percent during the same period. More than a quarter of those in hospice care were there for three days or fewer, and 40 percent of those late referrals to hospice care came after a hospitalization with an intensive care stay.
“For many patients, hospice is an 'add-on' to a very aggressive pattern of care during the last days of life,” said Dr. Joan Teno, professor of health services policy and practice in the Public Health Program at Brown University and a palliative care physician at Home & Hospice Care of Rhode Island. “I suspect this is not what patients want.”
In hospice care, a person’s final days on Earth are meant to be peaceful. Sadly, it appears that a growing number of dying seniors—14.2 percent up from 10.3 percent—are spending those days transferring to another location, “a significant burden on patient and family,” Teno said. The average number of facilities a dying person is transferred to increased from 2.1 in 2000 to 3.1 in 2009.
The paper’s senior author, Vincent Mor, a professor of health services policy and practice, said these trends reflect more time spent in intensive care, more repeat hospitalizations, and more late transitions.
What’s Causing the Problem and What Can We Do About It?
According to Teno, a mix of regional differences in physician culture, the financial incentives of fee-for-service care, and the lack of timely communication with patients and their family about the goals of care all contribute to unnecessary medical procedures for people with terminal illnesses.
The fee-for-service system, which reimburses care providers based on the number of treatments they administer, creates financial incentives for doctors to pursue aggressive, last-minute measures. Instead, the study authors say, providers should sit down with family members and patients to develop an end-of-life care plan that incorporates their preferences.
“We need to transform our health care system, from one based on fee-for service medicine for the majority of Americans, to one where people are not paid for just one more ICU day,” Teno said in a press release. “Instead we need a system where doctors and hospitals are paid for delivering high-quality, patient-centered care that understands the dying patient's needs and expectations and develops a care plan that honors them. We need publicly reported quality measures that hold institutions accountable to the standard of patient-centered care for the dying.”