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End-of-life care (EOL) has received a growing amount of attention in recent years, both in the media and in the health care profession. High-profile programs, such as the Bill Moyers’ series On Our Own Terms, have raised public awareness, while the establishment of local, regional, and national coalitions has signaled a concerted effort to establish quality standards and to improve physician and patient education. (One organization is attempting to establish EOL care standards for the state of Florida. See "EOL project educates communitites, institutions," in this issue.)
But the industry has only scratched the surface, say experts. "In a global sense, we still have a long way to go before we can be assured we are giving the kind of care we should be giving," says Vicky Weisfeld, MPH, senior communications officer with the Robert Wood Johnson Foundation in Plainsboro, NJ. Weisfeld oversees the foundation grant for Last Acts, a nationwide campaign to engage the public and health care professionals in efforts to improve EOL care. At present, it has more than 540 members, including service providers, professional associations, religious groups, and business organizations.
"From a quality point of view, we don’t know if all the people who provide palliative care’ are truly providing quality or are just getting on the bandwagon," she says. "Quality is more than just morphine and an advanced directive." (A collaborative effort in rural Wisconsin has focused nearly exclusively on advance directives, generating an extraordinary response from the public and resulting in a winning QI program. See "Task force initiative leads to 'important’ QI work," in this issue.)
Joanne Lynn, MD, agrees with that assessment. "We have been making progress, but in global terms, EOL care is still unreliable," says Lynn, who is president of Americans for Better Care of the Dying in Washington, DC, and director of RAND Center to Improve Care of the Dying in Arlington, VA. "We all know of situations where a patient is in terrible pain but nobody responds, or a family needs help but it’s nowhere to be found."
Joel Mattison, MD, physician advisor to clinical resource management (formerly "utilization management") at St. Joseph’s Hospital in Tampa, FL, a 910-bed general hospital, is "very disappointed" with the quality of care that exists nationwide with regard to EOL issues. "These projects that are springing up are the result of our patients telling us we are failing them in many places," he says. "Somebody brings in an advance directive, and sometimes it gets followed and sometimes it gets put aside. We should follow most advanced directives; we should all be doing that.
"We’re also falling short with pain relief," he continues. "At least 90% of the people could die without the pain they go through. Sometimes health care professionals are more concerned about patients becoming addicted than they are with treating pain, but if a patient is going to die within the next six months, then addiction is not really a problem."
The overriding irony of the current state of EOL care is that we know how to provide better care, says Lynn. "Our most pressing need," she told the Senate Special Committee on Aging during her testimony last July, "is to use what we already know about relieving suffering." This includes using pain medication appropriately, making supportive services available at home, and providing elementary bereavement services. "Some really simple things that make a big difference," she says.
Lynn is talking about going beyond theory. In a series of collaborative efforts over the past several years with the Institute for Health Care Improvement and teams from nearly 100 pro-vider organizations that wanted to improve EOL care, improvements were made quickly and effectively. "Nearly every team that stayed with the job for a few months made major improvements in something that matters to patients — within this time," she told the Senate committee.
Those improvements included the following:
Lynn says these results were achieved by using rapid quality improvement methods that should be part of the training of all professionals. "Some of them are most elementary," she notes. "Have a team, have a name, identify the aim you will measure, start making small changes, and make them over and over again. This [EOL care] is an arena that has been so ignored that a little bit of attention can make a big difference. We just need to apply the quality basics."
One of the key issues being addressed by Last Acts is the absence of care standards for terminal patients, notes Weisfeld. Along those lines, an organizational task force has created what it calls "The Precepts of Palliative Care." These precepts list five broad goals:
The precepts also include 28 statements that identify what palliative care must cover to reach each of those broad goals. Among the organizations that have endorsed the document are the American Nurses Association and other nursing specialty societies; the American Hospital Association; the American Association of Hospice and Palliative Medicine; the Veterans Health Administration; and the American Pain Society.
"This is a consensus document," says Weisfeld. "We didn’t think we could get anywhere unless there was some agreement on what palliative care was. The precepts have now been endorsed by [more than] 120 organizations, and some have used them in their own internal QI projects." Another Last Acts committee now is taking the precepts and breaking them down into steps organizations can take to improve quality, she reports.
The foundation has funded two other programs aimed at improving standards of care:
"Each is a little piece of the puzzle," Weisfeld explains. "Some deal with cancer centers, one with rural areas, and one with end-stage renal disease. If they can develop good models in those settings, they can be applied in other settings."
A group of providers in Vermont is trying to develop a common protocol for managing pain, Lynn reports. "Every provider will know how to make the protocol work, pharmacies will stock the drugs, and this will both reduce the number and reduce the risk of error in handoffs."
Pain management also is a critical issue for Mattison. "I see pain evaluation as the fifth vital sign. We need to know what kind of pain the patient is in. How do we rate the pain? "One of the real important things for us to recognize is that point in life when a patient ceases looking passionately and desperately for a cure and begins to want to be more comfortable," he continues. "Most patients will tell you that if you listen carefully." This approach can lead to standards such as discharging patients with a controlled level of pain. Mattison also recommends having information about advance directives out in the community, "so people will have one before it’s needed," he explains.
Where should quality managers begin when it comes to improving EOL care? "Find out which things are most important at your care system and start an ongoing, low rumble that we need to get things done," Mattison advises. "Also, start reaching out to other provider organizations that serve the same population. If your problem is patients being bounced from nursing homes to your hospital, it’s not enough just to improve your practices; you have to talk to the nursing homes," he says. "It’s unlikely that any one provider, no matter how good they are, will be able meet all the patients’ needs. You have to develop collaborations."
Improving EOL care doesn’t always result in immediate or even long-term cost savings. "In general, we will only pursue improvement because it will make patients feel better; there’s very little money to be made," Lynn says. "We can certainly improve the allocation of funds, but then someone else is making less money, she says. "We can greatly reduce hospitalizations, but only by enhancing home care and hospice care. You only truly save money if you own all parts of a system, like an HMO."
"Doing right by the patient may not fall within someone’s textbook definition of quality, but certainly one level of quality is how we take care of them," Mattison asserts. "One colleague put it this way to me: When patients are horizontal, they are thinking about outcomes. When they are vertical, they are more like customers interested in satisfaction.’ "As they move toward the vertical, they face change on a daily basis, and we need to know how to recognize that shift and how to respond," he explains. "They want a smile; they want their food salted. Nothing else is important when their only hope is to live another minute."