New study shows significant gaps in the availability of hospice care
Education, wealth, and age predict locations of hospice
An estimated 1.3 million patients received hospice services in 2006, a 162% increase in 10 years, and approximately 36% of all deaths in the United States in 2006 were under the care of a hospice program.1 Unfortunately, even with the growth in hospice access as a result of the Medicare Hospice Benefit enacted in 1982, a new study shows significant gaps in access due to locations of hospice agencies.
The hospice benefit was designed to improve access to hospice and to eliminate health disparities among different groups of people, says Maria J. Silveira, MD, MPH, assistant professor of internal medicine at the University of Michigan in Ann Arbor, and author of the study that examines the availability of hospice throughout the United States.
"We know that there are disparities in the utilization of hospice throughout the country, and this study was initiated to identify the underserved areas," she says. Using a combination of Medicare data on hospices and federal county-level 2000 census data, Silveira developed a "picture" of the gaps in hospice service. The main office address of the hospice and a 60-mile radius service area were compared to the population in the home county as well as surrounding counties into which the service area extended, she explains.
The map that shows concentrations of hospice agencies looks like a patchwork quilt with the areas of highest hospice availability in the Northeast, upper Midwest, and most of California. There is less availability in states along the Mississippi and in the Rocky Mountain states and the Southwest. Lower-than-average availability of hospice is found in much of the South, Texas, Florida, and the Plains states.
On average, the study found that counties have 2.1 hospice main offices within their borders, but the actual number for each county ranges from none to 125 hospice agencies, says Silveira. When the 60-mile-service area is considered, an average of 52 hospices served each county, but once again, the actual number ranged from none to 280, she adds.
"This study was a pilot study to see if it is possible to correlate the data from Medicare and the census," Silveira says. The fact that a hospice's main office location rather than the main office and all branch offices were used in the initial data may increase the number of hospices serving some counties, she says. "This study presents a big picture rather than many details, so that we can identify other studies needed to determine hospice availability," Silveira explains.
Education, wealth, and age affect availability
After examining the population density of the county compared to hospice availability, Silveira looked at other factors' correlation to use of hospice.
"The three most influential factors related to use of hospice were education, wealth, and age," she explains.
Areas with the higher numbers of people with high school degrees had higher numbers of hospices, says Silveira. "Also, for every 5% increase in the population making more than $100,000 per household, the number of hospices doubled," she adds.
Age also is a strong indication for availability of hospice, says Silveira. "Counties with the lowest availability of hospice averaged 16.2% of the population over the age of 65, and counties with highest availability averaged 14.2% of the population over the age of 65," she says. This finding does jibe with other research that shows elderly people choose hospice less often than they choose nursing homes and home health, she explains.
"We also know that African-Americans and Hispanics traditionally choose nursing homes or home health over hospice, and this study confirms that areas with higher African-American or Hispanic populations have less availability of hospice," Silveira says.
Because her initial study did not look at the availability of nursing home or home health care in comparison to hospice, Silveira plans to include this comparison in her next study. "The data from this study does not account for the availability of these services, so we don't know if people in these areas have access to them in place of hospice," she says.
While nursing homes and home health can provide care, the concern about the lack of hospice availability is the difference in the quality of end-of-life care provided by each organization, she adds.
Rural areas underserved
Although population density was not a key indicator of hospice availability, most hospices are located in areas with larger populations, says Silveira. Another correlation highlighted by the data is that counties that are larger than 1,000 square miles have 7% less hospice availability than counties smaller than 1,000 square miles. Because larger counties are typical of more rural areas, this statistic points out the challenge to hospices that serve rural areas, she points out.
Time and distance are two key challenges for hospices serving rural areas, but some organizations are turning to technology for help, says George Demiris, PhD, associate professor of behavioral nursing and health systems at the University of Washington School of Medicine in Seattle and researcher with the Missouri Telehospice Project. The Telehospice Project is a group of four hospices that are using videophones to test the outcomes and develop best practices for the use of telehospice, he explains. Telehospice is a tool that can potentially be very useful for hospices serving rural areas, he adds.
One of the research projects focused on the use of videophones to include the patient and family caregivers, explains Demiris. "Most agencies invited family caregivers and the patients to their interdisciplinary team meetings, but they rarely attended due to the distance of travel or the frailty of the patient," he explains. By installing a videophone at the patient's home and in the hospice conference or meeting room, patients and their family caregivers can participate, he points out.
The study utilized two groups, one with the videophones and one without videophones. "The patients with videophones were able to direct their questions to members of the team they don't normally meet, such as the medical director," Demiris says. Issues related to pain control or symptom management were brought up by the patient or caregiver and addressed immediately by the nurses or medical director, he explains.
Issues related to pain control or symptom management were less likely to be addressed in as timely a manner in the control group, Demiris says. "Because patients and caregivers might not tell nurses about all of their concerns, nurses did not always know to bring up issues at the team meetings, so they would have to follow up with physicians or other team members after visiting the family," he says.
Staff members and patients using the videophones reported higher satisfaction with outcomes and the process than members of the control group, says Demiris. "The videophone allows patients to participate more effectively in decisions about their care, even when distance is a problem," he adds.
While technology can be used to improve a hospice's ability to serve rural areas, it does not address a significant reason that hospices have difficulty serving rural areas, says Silveira. One of the ways that hospices traditionally had made ends meet financially is to rely upon charity and volunteers, she points out. This need for a strong financial base may be one reason that hospices are located in areas that are more urban with residents who have higher financial resources and educational backgrounds, she says. One solution that would enable more hospice service in underserved areas would be an increase in the Medicare Hospice Benefit, she suggests. "If the Medicare Hospice Benefit was designed to cover the costs of providing hospice care, hospices would not have to rely upon charity and volunteers to cover costs, Silveira says. "This would enable more hospices to provide services in communities that may not have the population, education, or wealth to provide the extra support."
1. National Hospice and Palliative Care Organization. NHPCO's Fact and Figures on Hospice. Alexandria, VA; 2007. Web: www.nhpco.org/files/public/Statistics_Research/NHPCO_facts-and-figures_Nov2007.pdf.