ShareThisWhere you live your last days can make a tremendous difference in how well you die.
A number of recent studies illustrate that despite decades of progress in end-of-life care, the availability or accessibility of hospice care is unevenly distributed across the United States.
One analysis, by researchers at the University of Michigan, combined Medicare data and Census data to create a national look at the prevalence of hospice care.
They found heavy concentrations of hospices in the Northeast, the upper Midwest and metropolitan areas of California, and lower-than-average availability across much of the South, including the rural counties of Texas and Florida, and in the Plains states -- areas that are traditionally medically underserved by many fields.
Beyond geography, the study found that hospice care is scarcer in communities with lower incomes and education levels -- and with larger concentrations of elderly people.
According to Medicare billing records, the average county has two hospices operating within its borders, but the specific numbers range from as many as 125 to none. More than 3,200 hospices around the country get Medicare payments.
Hospice generally involves trying to provide good, compassionate care -- medical as well as pain management and spiritual support -- to patients not expected to live more than a few months.
Although hospice started out decades ago mostly supported by volunteers and charity, it has become mainstream and more likely to be run by for-profit corporations.
Medicare has paid for hospice since 1982, and now covers the majority of such care in the United States -- spending more than $10 billion a year. Even so, only about 40 percent of Medicare patients who die each year receive any hospice services, and half of those die within about two weeks of entering the program -- not much time for patients and families to say goodbye.
Hospice operators say Medicare only reimburses 70 percent of the cost of many services, and Dr. Maria Silveira, the lead researcher for the Michigan study, said that largely explains why hospice is concentrated in higher-income, higher-education areas.
Residents of such areas offer more charitable and volunteer support to hospices, or are better able to pay for quality end-of-life care on their own.
Researchers have also noted that low reimbursement rates from Medicare and Medicaid give nursing homes little incentive to offer specialized end-of-life services.
Although 25 percent of all deaths in America occur in nursing homes, a recent report by the National Center for Health Statistics found that just 2.5 percent of patients in those homes were getting hospice, palliative or other end-of-life care. Nursing homes typically contract with hospices to manage end-of-life care for residents.
A review of the survey data by the Institute for the Future of Aging Services found that just 17 percent of nursing homes have programs aimed at ensuring that patient instructions on resuscitation and other such directives are passed along to nurses and other medical staff in the home.
The survey showed that only 17 percent of nursing homes had special programs and trained staff for hospice or palliative care, a quarter offer pain-management programs and 32 percent have specialized units and staff for dementia care.
Homes with any of those services were more likely to have programs aimed at implementing patients' end-of-life preferences.
One problem is that the Medicare hospice benefit is a "one-size-fits-all" package that defines the same eligibility and services for all patients, no matter what their diagnosis or in what setting they're receiving care, a group of Harvard health-policy experts note in a new paper published in the journal Health Affairs.
Medicare hospice coverage is particularly a poor fit for nursing homes because doctors must certify that patients have no more than six months to live, and patients must give up curative treatment.
Yet studies show that nursing-home residents in hospice are in the program for an average of five months, and that many are dementia patients, among the most difficult condition for doctors to predict how much time remains.
Instead, economist Haiden Huskamp and his Harvard colleagues argue that Medicare should set up a separate end-of-life benefit for nursing-home residents based on their documented need for pain management, counseling and other services, without necessarily having to certify a terminal illness and meeting other requirements of the current hospice benefit.
(Contact Lee Bowman at Bowmanl(at)shns.com)
THE MEDICAL JOURNAL
