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Report card gives states low grades on EOL care
Programs increase but improvement scarce
Though the number of programs to improve care for patients at the end of life have increased, little real progress has been made, claims a new report from Washington, DC-based Last Acts, the Robert Wood Johnson Foundation-sponsored coalition to improve care for the dying.
On Nov. 18, 2002, Last Acts released a report card grading all 50 states on key end-of-life care criteria. The report, "Means to a Better End: A Report on Dying in America Today," gave most states grades of Cs, Ds, and Es (with E being the lowest rating that could be received) in most of the areas studied.
"Changing the way America cares for the dying amounts to no less than a major social change," Steven Shroeder, president of the Robert Wood Johnson Foundation, said in a statement accompanying the release of the report. "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 eight key elements of palliative care: state advance directive policies; location of death; rate of hospice use; hospital end-of-life care services; care in intensive care units at the end of life; persistent pain among nursing home residents; statement pain management policies; and the numbers of physicians and nurses certified in palliative care.
Advance directive laws are insufficient
According to the report, some state laws governing advance directives include confusing language or create bureaucratic hurdles that make it difficult for citizens to express their preferences or to designate the desired surrogate decision-makers.
Only seven states got an A’ for their state advance directive measures: Delaware, Florida, Hawaii, Maine, Maryland, Michigan, and New Mexico.
Those states most closely followed the recommendations for state policies contained in the Uniform Health Care Decisions Act, the report stated. Those recommendations are:
States receiving an "A" scored 4.5 to 5.0 on the above criteria, while states earning an E (Alaska, Kansas, Pennsylvania, and Vermont) scored 0.5 to 1.0.
Only 25% die at home
Although polls show most Americans would prefer to die at home, only about 25% do, the report found. Where people die (location of death) — in a hospital, nursing home, hospice or at home — largely depends on the state or community where they live and the health care resources available there. These factors continue to outweigh patient preferences, the report stated.
The report gave states one of five grades in this area with the top grade reserved for states in which more than 60% of deaths occurred at home, a level below the expressed desire of more than 70% of Americans. But no state received an "A" grade in this category and most states received grade "D," indicating fewer than 30% of patients were able to die at home.
Although the number of organized palliative care programs is growing, such programs are still not the norm, the report found.
Although almost half of all deaths take place in hospitals, many hospitals still do not offer pain management programs and hospice services.
A self-reported survey conducted by the American Hospital Association (AHA) in 2000 and included in the report, found that only 42% of U.S. hospitals reported offering a formal pain management program, and 23% and 14% offered formal hospice or palliative care programs, respectively.
The AHA defines the recommended services as follows:
a) Pain Management: A formal program that educates staff about how to manage chronic and acute pain based on accepted academic guidelines.
b) Hospice: A program providing palliative care and supportive services that addresses the emotional, social, financial, and legal needs of terminally ill patients and their families. This care can be provided in the hospital or at home under the auspices of the hospital.
c) Palliative Care Program: A program providing specialized medical care, drugs, or therapies to manage acute or chronic pain and/or control other symptoms. The program, run by specially trained physicians and other clinicians, also provides services such as counseling about advance directives, spiritual care and social services to seriously ill patients and their families.
While the number of organized palliative care programs in hospitals is increasing, the report stated, such programs are not yet the norm and do not easily fit into the coverage and payment policies of Medicare and other insurers.
"Funding for these programs often depends on cobbling together resources from different departments and funding streams, including short-term grants," the authors state. "Their continuation is jeopardized whenever any of these resources disappear."
No states earned an "A" in this category.
Care in the ICU
Nationwide, 28% of Medicare patients who die are treated in ICUs in their last six months of life, though the rates vary widely, even within individual states.
Patients in ICUs typically are subjected to the heavy use of technology, the report said, sometimes at the expense of attention to comfort or against expressed treatment preferences.
For example, a study of cancer patients being treated in the ICU found that 55%-75% had moderate to severe pain, discomfort, anxiety, sleep disturbance or unsatisfied hunger or thirst, the report noted. Another study of ICU cancer patients established that patients’ expressed treatment choices — detailed in advance directives — did not affect whether life-support efforts were initiated.
Nearly half of the 1.6 million Americans living in nursing homes have persistent pain that is not noticed and adequately treated.
"The percentage of nursing home patients who are considered to be in persistent pain was calculated by finding the percentage of patients in pain, when first asked, who were still in pain when asked again, 60 to 180 days later," the report said.
States where fewer than 25% of nursing home residents have persistent pain would have received an A. (None qualified.)
State pain management policies
Some state laws on controlled substances create formidable barriers to good pain management. The report assessed pain policies using six criteria and assigned a point value to each:
States were given grades, according to their overall score, which ranged from 3 to +9. States in the A group scored +8 to +9 overall; those in the B group scored +6 to +7, etc.
Seven states (Alabama, Florida, Kansas, Nebraska, North Carolina, Utah and Washing- ton) received an "A" grade. Ten states received an "E" grade: Alaska, Connecticut, Delaware, Hawaii, Idaho, Illinois, Indiana, Louisiana, New York, and Wisconsin.
Numbers certified in palliative care
Medical and nursing students do not receive adequate palliative care training and little training is available to professionals already practicing in the field.
As of January 2002, 7,623 U.S. nurses were certified in hospice and palliative care as certified hospice and palliative nurse (CHPN). The Hospice and Palliative Nurses Association has provided this certification since 1994. To be certified, CHPNs must demonstrate both knowledge and competency in hospice and palliative nursing.
On a positive note, the report said, large hospice programs are beginning to acknowledge the benefits of having certified nurses on their staffs. Several programs and state hospice organizations sponsor review courses and provide financial assistance to nurses interested in certification; others offer certified nurses higher salaries.
But while accreditation standards for medical schools now include the mandate to cover end-of-life care, the requirement contains no clear standards for that instruction. As the Accreditation Council for Graduate Medical Education does not yet accredit palliative medicine residencies or fellowships, a limited number of these programs currently exist.
In a statement responding to the release of the Last Acts’ report, the American Hospital Association (AHA) claimed the document did not accurately reflect the many improvements that hospitals and providers have made in recent years.
"The report and report cards bring needed attention to a difficult issue," said AHA president Dick Davidson. "But what is not reflected in today’s report are the collaborative efforts and partnerships that many hospitals are engaged in outside their walls."
In many communities, hospitals are partnering with independent hospices and other organizations to develop new services to offer patients and their families, he said. "It is important that families, caretakers, and health leaders learn more about care at the end of life and the role we all play in provide that care."
"We know most states can cite examples of excellent care and progress being made to improve care," says Judith R. Peres, Last Acts’ deputy director and the leader of the report’s research team."
The fact remains, however, that overall care for the dying is still inadequate in this country and drastic improvements are called for, Peres says. "Dying patients and their families still suffer more than they should. We still have a long way to go to improve health care and policy for this segment of the American population."
The full report is available on-line at www.lastacts.org, including individual state-by-state reports giving state information in fuller detail.