While nursing homes are the place where an estimated 30 percent of Americans die, there currently exists no way to compare which institutions do a better job at managing end of life care. A new study appearing this week in the Journal of Palliative Medicine is starting a discussion over the need to create end of life quality measures in order to both inform consumers and provide nursing homes with incentive to improve care.
"Nursing homes are increasingly becoming the place where people go to die," said Helena Temkin-Greener, Ph.D., a professor of Community and Preventive Medicine at the University of Rochester Medical Center (URMC). "By 2020, the percentage of people who die in these institutions will grow to 40 percent. And yet while we have seen an explosion of health care 'report cards' none of them can tell us which nursing homes are better at providing end of life care."
The federal Centers for Medicare and Medicaid Services (CMS) compiles a wide range of information from staffing levels, inspection results, and measures of the quality of care such a pressure sores, infections, and incontinence for more than 16,000 nursing homes across the nation. This data is published on the CMS Nursing Home Compare website. While this information allows consumers to compare the performance of nursing homes for a number of aspects of care, it does not indicate how well or poorly a facility provides end of life care.
"The lack of measures of quality of care provided to dying residents not only denies patients and families the ability to make informed choices, but it also means that nursing homes do not have the information and the incentives to improve quality of end of life care," said Dana B. Mukamel, Ph.D., professor in the Department of Medicine and senior fellow with the Health Policy Research Institute at the University of California, Irvine. "We know that there is a correlation between the publishing of quality measure and subsequent steps taken by providers be that a nursing home or a hospital to improve care."
The study's authors looked at two quality measures: the number of dying residents who were transferred to a hospital and subsequently died there and the use of hospice care in nursing homes. Their goal was to create prototypes of quality measures for end of life care and to demonstrate that such measures could be calculated from information that is currently available and added to the Nursing Home Compare report card.
Fewer hospital transfers particularly at the end of life are considered to indicate a higher level of care in a nursing home. Previous studies have shown that 45 percent of the time such transfers are inappropriate and avoidable. Because transfers increase the risk of illness, heighten stress, and are disruptive, they can accelerate a person's decline in health and quality of life. The study found that 20 percent of long-term nursing home residents died in a hospital.
The use of hospice care in which specialists in areas of pain and symptom management and psychological, emotional, and spiritual support and counseling are brought in to treat dying residents also indicates a higher level of end of life care quality. Currently, an estimated 33 percent of nursing home residents received hospice care at the time of their death.
The authors are also studying two other quality measures that could signal the quality of end of life care pain management and shortness of breath. The results of this study are expected to be published in another forthcoming paper.
"We believe that these measures, which can be readily calculated from data already being collected, have the potential to measure the quality of end of life care in nursing homes," said Mukamel. "This is the first attempt to identify such a measure and we hope that this leads to a long overdue discussion in the health care community regarding this important topic."