State-by-State Report on Care for the Dying

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First Nationwide State-By-State ‘Report Card’ On Care For The Dying Finds Mediocre Care

Last Acts Report Highlights ‘Islands of Excellence’ Despite Grim National Picture

Opinion Poll Shows Americans Dissatisfied and Seeking to Reduce Financial Burden, Physical Pain and Emotional Stress Associated with End of Life

November 18, 2002 - America does only a mediocre job of caring for its most seriously ill and dying patients, according to the nation’s first state-by-state “report card” on end-of-life care released today. Last Acts, the nation’s largest coalition working for better care and caring near the end of life, issued today’s report, grading all 50 states and the District of Columbia on eight key elements of end-of-life care. Most states earned C’s, D’s and even E’s on the majority of the criteria.

Corroborating these data, Last Acts also today released a national survey showing that a significant number of Americans, including those who have recently lost a loved one, are dissatisfied with the way the country’s health care system provides care to the dying. The survey found that 93 percent of Americans believe improving end-of-life care is important.

The “report card” -- Means to a Better End: A Report on Dying in America Today -- evaluates the availability and use of key services. It is the product of more than a year’s study by Last Acts, a Robert Wood Johnson Foundation funded campaign whose honorary chair is former First Lady Rosalynn Carter. Last Acts comprises more than 1,000 Partner organizations, including the American Medical Association, the American Nurses Association, the American Hospital Association, AARP and NAACP. An interactive special report on Means to a Better End, including research findings, is available on The Robert Wood Johnson Foundation Web site, http://www.rwjf.org/special/betterend.

“Changing the way America cares for the dying amounts to no less than a major social change,” said Dr. Steven Schroeder, president of The Robert Wood Johnson Foundation, the nation’s largest philanthropy devoted exclusively to health and health care. “As this report points out, although we have begun making progress on many fronts, today we find ourselves at a crossroads. We need the dedicated support of policymakers 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.”

In the report, each state receives letter grades on each of eight key elements of palliative care. Palliative care, including hospice care, is widely recognized as the best approach for the seriously ill and dying. It relieves pain and other physical symptoms while supporting patients and families emotionally and spiritually and respecting their cultural traditions.

The report was compiled using the most recent data available, which were reviewed by national experts in end-of-life care.

Overall findings are:

	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 percent of Americans would prefer to be at home with loved ones in their final days, only about 25 percent 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.
	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.
	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 at the End of Life: Nationwide, 28 percent of Medicare patients who die are treated in ICUs in their last six months of life. The 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,” said Judith R. Peres, deputy director of Last Acts and the 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.”

Peres noted that the Last Acts report offers a broad-brush statistical portrait of care for the dying across America, not a detailed analysis of each end-of-life care program in every state. “We know most states can cite examples of excellent care and progress being made to improve care,” she said. “For example, over the past five years, we have seen an increase in the number of schools and textbooks teaching end-of-life care to medical and nursing students. State and local coalitions have developed innovative programs to improve care such as those making it easier for people to write advance directives. And more professional groups are getting involved in end-of-life care, including clergy, social workers and pharmacists.

“Fortunately we have examples of good end of life care. These examples take us part-way to understanding what is needed to fix the problem. To complete the journey, we recommend certain improvements,” she said.

The Last Acts report recommends the following:

	Federal Policy: Medicare must be reformed to meet the needs of seriously ill and dying people. Benefits, coverage and payments must be altered to allow for seamless patient-centered care for those facing progressive, serious and terminal illnesses.
	State Policy: In many states, people will suffer needless pain until state lawmakers change the rules that affect doctors’ ability to prescribe needed medications.
	Health Care Leaders: Physicians, nurses and other health care professionals must be specially trained in palliative care, and hospitals and nursing homes should have programs to deliver this care effectively. Research and data collection priorities must be established and funded.
	Families: Citizens need to understand more about end-of-life care choices and join coalitions working to expand the choices in their communities. Before placing a loved one in a nursing home or hospital, families should ask if the institution has a palliative care program– and if not, the family should find an institution that does.

Opinion Poll Shows Desire for Improved Care

Along with the national report card, Last Acts simultaneously released a public opinion poll today showing that the majority of Americans are critical of the care dying people in this country receive. Results also showed that most Americans believe improving care is important.

The survey found that six in 10 Americans give our current health care system a rating of only fair or lower, including a quarter who rate it as poor. Only one in 10 gives the system a rating of very good or excellent.

The poll, conducted by Lake Snell Perry & Associates surveyed 1,002 adults between August 30 and September 1, 2002. Three-quarters of those surveyed reported having lost a loved one – such as a family member or close friend – recently (in the past five years). People who had suffered these recent losses and people who had not were equally critical of the health care system’s care for the dying, with 59 percent and 56 percent, respectively, giving a rating of only fair or worse.

Three-quarters of those surveyed rated the health care system fair or lower on assuring that families’ savings are not depleted by end-of-life care. Almost half (47 percent) gave a rating of poor. Those who had had a loved one die recently were more likely to give a poor rating on this item than those who had not (49 percent vs. 40 percent).

When asked to rate the health care system for its ability to provide emotional support for the dying and their families, 46 percent of the respondents said the system does an only fair or poor job. Four in 10 believe the system is doing a good, very good, or excellent job in this area. Those who had suffered a loss recently were again more likely to give a poor rating than those who had not.

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