Report card gives states low grades in providing end-of-life care
State-by-state analysis points to limited hospice use and low LOS
A state-by-state report card on hospice services shows most states are doing a poor job of caring for the dying. According to the report, patients are spending less time in hospice care than they did in the early 1980s when the movement first started in the United States.
The report, by the Last Acts organization in Washington, DC, found that states are doing little to encourage terminally ill patients to seek hospice care, or to do so earlier in their illness to take the greatest advantage of hospice benefits.
In the report, states were graded on key elements of end-of-life care. This included: advance directive policies, the number of people who die at home, hospice use, hospital end-of-life services, nursing home care, pain management policies, and the number of providers trained in palliative care.
Overall, most states earned C’s and D’s, with few states scoring high marks in any of the categories. More states earned the lowest grade, an E, than those that earned higher marks.
"As this report points out, although we have begun making progress on many fronts, today we find ourselves at a crossroads," says Steven Schroeder, MD, president of The Robert Wood Johnson Foundation in Princeton, NJ. "We need the dedicated support of policy-makers and health care leaders to put us on the path to establishing end-of-life care once and for all as an integral part of American medicine."
Here is a synopsis of the report’s findings in key areas:
• State advance directive policies: Some states’ laws include confusing language or create bureaucratic hurdles that make it difficult for citizens to express their preferences or to designate appropriate surrogate decision-makers.
• Location of death: Although research shows that 70% of Americans would prefer to be at home with loved ones in their final days, only about 25% die at home. Where people die — in a hospital, a nursing home, hospice, or at home — depends on the state or community where they live and the health care resources available there. Research has shown that these factors outweigh patient preferences as influences.
• Rate of hospice use: Hospice care is a "gold standard" for end-of-life care. However, hospice is not widely used in most states. Furthermore, the average length of stay in hospice has dropped to well below the 60 days considered necessary for people to get maximum benefit. In fact, dying patients commonly have the support of hospice care for less than a week. (Click here to see chart.)
• Hospital end-of-life care services: Though the number of organized palliative care programs in hospitals is increasing, such programs are not yet the norm. Nor do a sufficient number of hospitals offer pain management programs and hospice services.
• Care in intensive care units (ICUs) at the end of life: Nationwide, 28% of Medicare patients who die are treated in ICUs in their last six months of life. This rate varies widely, even within individual states. Patients in ICUs typically are subjected to heavy use of technology. This may be at the expense of attention to comfort or against expressed treatment preferences — often expressed as "I don’t want to die hooked up to machines."
• Persistent pain among nursing home residents: Nearly half of the 1.6 million Americans living in nursing homes have persistent pain that is not noticed and not adequately treated.
• State pain management policies: All states have laws addressing the use of controlled substances. Some are effective, but others create formidable barriers to good pain management.
• Numbers of physicians and nurses certified in palliative care: Palliative care training for the nation’s physicians and nurses lags far behind the needs of the aging U.S. population. This is true for medical and nursing students, as well as for the hundreds of thousands of professionals already in practice.
"Dying patients and their families today suffer more than they should," says Judith R. Peres, deputy director of Last Acts and leader of the report’s research team. "We still have a long way to go to improve health care and policy for this segment of the American population."
The National Hospice and Palliative Care Organization (NHPCO) in Alexandria, VA, agreed with some of the findings of the national study and cited late use of hospice as a significant impediment to end-of-life care. "There’s a lack of information about what hospice offers and how it’s paid for," said NHPCO president Don Schumacher, "and we’re hoping that this state ranking will prompt individuals to discuss end-of-life options with their physician and family so they can make informed decisions when the time comes."
A member of the contributing panel, Schumacher says the rankings reflect the use of end-of-life care more than the quality of it.
"There is no doubt that earlier and more widespread use of hospice and palliative care would benefit patient and family," says Schumacher. "The heartbreaking truth is that this high-quality, optimal end-of-life care is available in most parts of America, but it’s not being used until patients are at death’s door. Hospice was never designed to be brink-of-death care, and it shouldn’t be.
"We want to see more people use hospice and we’re always striving for greater awareness, but our frustration with late referrals shouldn’t overshadow our gains in serving the terminally ill. Hospice programs are serving diverse populations and caring for more types of illnesses than ever before, notably Alzheimer’s and heart failure. There’s much work to be done, but we’ve come a long, long way."
(Editor’s note: To see a complete copy of the report, go to www.lastacts.org and click on "Means to a Better End: A Report on Dying in America.")
A state-by-state report card on hospice services shows most states are doing a poor job of caring for the dying. According to the report, patients are spending less time in hospice care than they did in the early 1980s when the movement first started in the United States.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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