U.S. end-of-life care gets a (barely) passing grade

Survey shows there is much more work to be done

America received a grade of "mediocre" on its care for the dying in a new report from the Washington, DC-based organization Last Acts, Means to a Better End. The report, funded by the Robert Wood Johnson Foundation in Princeton, NJ, provides a state-by-state report card on end-of-life (EOL) care.

Among the key findings in the survey of 1,000 individuals are:

Nationally, only 25% of deaths occur at home, although more than 70% of Americans say that this is where they would prefer to die.

About half of all deaths occur in hospitals, but less than 60% of the hospitals in any given state offer specialized EOL services.

Nationally, an average of 14% offer palliative care, 23% offer hospice care, and 42% offer pain management services. Although these programs are becoming more available, reimbursement issues still are a challenge. Funding for such programs often depends on inconsistent sources, such as donations and private grants.

The percentage of deaths that include a hospice stay varies by state, from about 5% to 42%. Most states have only fair hospice use, with about 12% to 25% of deaths including a hospice stay.

Experts agree that patients need at least 60 days of hospice care to maximize its benefits, but the report found that hospice stays range from 14 to 43 days per state.

In any given state, at least one in four nursing-home residents experiences pain for at least two months without appropriate pain management.

On average, the percentage of U.S. physicians certified in palliative care is 0.33% (33 physicians for every 10,000 people); the average percentage of nurses certified in hospice and palliative care is 0.41% (41 nurses for every 10,000). This lags far behind the needs of the U.S. population.

Twenty states recommend that people draw up a single, comprehensive advance directive (a living will and/or a medical power of attorney), which reduces confusion. Thirty-five states do not require that mandatory forms or language be used for advance directives, which allow people to state their wishes in their own way.

Between 16% and 37% of deaths among Medicare recipients in any given state include hospitalization in an intensive care unit (ICU) during the last six months of life. ICU care often is uncomfortable and unwanted: A study of cancer patients in the ICU found that 55% to 75% had moderate to severe pain, discomfort, anxiety, sleep disturbance, or unsatisfied hunger or thirst.

Twenty-four states have pain management policies that explicitly address the needs of the terminally ill, and 18 policies express concern about the undertreatment of pain in this group. Experts agree that up to 95% of serious pain can be treated effectively, but half of all dying people still experience severe pain.

Hospital not the best place?

One of the more interesting findings is the fact that the vast majority of patients prefer to die at home. "One poll shows that figure as high as 86%," notes Judith R. Peres, LCSW-C, deputy director of Last Acts. "They want to be comforted at home, surrounded by loved ones."

What health care institutions must realize, she notes, is that in the dying process most people prefer privacy.

"A semiprivate room does not lend itself to 24-hour visiting," she observes. "Also, with appropriate palliative care, almost any case can be managed at home."

In essence, she says, it often can be a better "quality" move to let patients go home, rather than to keep them in the hospital; "although a good institution can set the stage properly."

This raises the issues of what constitutes good palliative care. To Peres, it is a holistic concept encompassing biological, psychological, social, and spiritual needs. "Comprehensive, holistic care treats the whole person," she explains.

"Providing comfort involves seeking to eliminate all suffering — physical, emotional — attending to the family system and to spiritual needs." In fact, she notes, there is an entire movement that argues palliative care should not be just for EOL care, but rather should be moved "upstream," to the point at which the diagnosis is made.

Pain management, an important subset of palliative care, is one of the areas in which health care currently falls short, Peres says. As the report notes, 95% of all pain can be treated effectively.

"There are peer-reviewed studies cited in the report," she notes. "However, a well-meaning primary care physician won’t alleviate pain in the same way a pain management-trained physician would." (To see the report, go to: www.lastacts.org.)

Interestingly, people will rate pain management highly as a critical component of care but also say they want to be awake and conscious, says Peres. "However, when they are asked to make a choice, they choose pain management," she asserts.

Using the report card

How can the report card be used to improve care? "For the general public, we hope they can see that the use of advance directives is very important in making their wishes known," Peres says.

Policy-makers, she notes, can compare their states’ laws to those in other states. "They can certainly do something that will make physicians less fearful [of providing the most appropriate palliative care], and these are not budget-busters," she declares.

In addition, the American Hospital Association and other health groups through the Circle of Life awards (also supported by the Robert Wood Johnson Foundation) are working to recognize new approaches to EOL care that can provide models others can adapt to fit their community’s needs and resources.

"Quality managers can take ideas presented in the report; sprinkled throughout are award winners," Peres notes. "They can contact their fellow hospital leaders and see how they put their programs in place."

Need More Information?

For more information, contact:

  • Judith R. Peres, LCSW-C, Deputy Director, Last Acts, 620 Eye St. N.W., Washington, DC 20006. Telephone: (202) 296-8071. Fax: (202) 296-8352.