Melissa Hardy had a sudden urge to talk to her mom. She dialed her number and told her that she had all the fixings for spaghetti.

"She just loved spaghetti," said Hardy, now the executive director of FSU's Pepper Institute on Aging and Public Policy. Plans were made for a weekend dinner.

It was the last time Hardy and her 75-year old mother spoke.

While playing bridge the next day at the Tallahassee Senior Center, Claire Hardy clutched her chest, tightly squeezed the wrist of the woman sitting next to her and collapsed from a heart attack.

An ambulance and Melissa were called. Before she stepped into the hospital emergency room Melissa prepared to face a moment of truth. Her mother had told her that under such circumstances she did not want to be resuscitated. Would she be strong enough, if asked, to comply with her mom's wishes?

"When I got there she was already gone," said Hardy. "She had this thing in her mouth and a tube," Hardy gestured to her throat and shook her head at a painful memory from 1997.

"They had tried to resuscitate her in the ambulance because nobody knew. And I said, 'Oh mom, this is just what you didn't want and I could not keep it from happening.'"

In the six years since Claire Hardy's death, reforms—championed by the Pepper Institute—have made it more likely that Claire's wishes would be followed. In 1998 the Florida Legislature tackled complaints about citizen's dying wishes being ignored and created the Panel for the Study of End-of-Life Care, the first legislatively ordained body ever convened in Florida to deal with the subject.

Tapped to chair the panel was Dr. Robert Brooks, a legislator and a practicing physician from Orlando. Brooks knew well that the panel's charge would mean dealing with a range of emotionally loaded topics, difficult to discuss in the political arena. An academic setting clearly was called for. As it turned out, that was only a matter of looking down the hill a few blocks from the state capitol.

Since its founding in 1985, FSU's Pepper Institute on Aging and Public Policy has become a leading education and research center on all issues related to aging in America. Hardy, the institute's director since 1995, also is a professor of sociology. She helped Brooks coordinate the panel, staff it and administer a series of public hearings, which began in late spring 1998.

For 18 months, the 22-member Pepper panel—which included health-care workers, lawmakers, academics and advocates for the elderly and disabled-carefully studied every facet of end-of-life care in the Sunshine State. People testifying before the panel described a "Gordian knot" of medical tradition, state regulations and patients' natural reluctance to discuss death. The picture revealed considerable confusion over advance directives (formal instructions intended to spell out a person's last wishes concerning medical care); over state regulations covering the elderly, and in particular, over the issue of pain—how to manage it both legally and ethically.

The panel learned that Florida doctors were more focused on curing sicknesses rather than making their patients' last days on Earth as comfortable as possible. State law on relieving pain with drugs conflicted with federal laws governing controlled substances. And people's fear of death left them unable to consider the kind of care they would want in their final days.

The panel eventually concluded that Florida's system of end-of-life care had serious deficiencies including:

• advance directives either were being ignored—mainly because people didn't know they existed—or little-used because the lack of a standardized form made health-care providers suspicious about their legality;
• pain was going untreated because doctors lacked education about pain management and feared running afoul of laws regulating narcotics;
• physicians often failed to talk to their patients about pain, advance directives and related topics;
• the state had no legal guidelines for giving proper end-of-life care to the so-called "unbefriended," those incapacitated patients for whom little is known.

These findings, along with a series of proposals, subsequently were presented to the Legislature by the Pepper panel. New laws, passed in 1999 and 2000, represented a major reform on end-of-life care policies in Florida.

Specifically, the laws—at least ostensibly—did the following:

• guaranteed every Floridian access to effective pain management when they need it most;
• gave pain the status of a fifth vital sign which health-care providers must record on a chart along with blood pressure, temperature, pulse rate and respiration;
• protected doctors from drug violations when prescribing controlled substances specifically for easing pain;
• mandated that health-care providers discuss advance directives with patients and their families and
• ordered the state Department of Health to devise a standard format for advance directives.

National advocates for better health-care for the elderly and terminally ill applauded the new laws.

"All major steps in the right directions," said M. Gary Eakes, an attorney with Partnership for Caring, a Washington, D.C.-based advocacy group for the terminally ill. "Florida took a comprehensive view, looking at many aspects that are not given proper attention."

"Florida is at the top of the pack," echoed Paul Malley, president of Aging with Dignity, a Tallahassee-based advocacy group for the elderly. "(Now) it has an opportunity to lead the nation (on these issues)."

Facing the Florida phenomenon

Despite the considerable progress wrought by the reforms ushered in by the FSU panel, apparently Florida still has a way to go make its end-of-life care as good as it can be.

Last November, the state was given an overall grade of "C" by Last Acts, a national coalition started by the Robert Wood Johnson Foundation to improve the care of dying people. The good news, though, was that "C" was the highest grade average the coalition gave any state. Florida, in fact, posted the fourth highest overall score in the nation (1.8 out of a 4.0 scale, behind New Hampshire (2.0), Oregon and New Mexico (1.9 each). Florida was mainly faulted for its ICU care and the availability of hospice services, posting a failing grade in both areas.

The mixed report casts light on both the progress Florida has made and the unique challenge the state faces. Florida leads the nation in the transition towards an older population. The latest figures show that 18 percent of Floridians, higher than any other state, are over 65. Demographers expect that by 2020 more than 4.6 million elderly residents will call Florida home.

Given this scenario, the Last Acts report card validates the Pepper panel's success in confronting what few states have to. The panel spent most of its energies grappling with the two most vexing issues facing end-of-life-advance directives and pain management. Last Acts gave Florida "A's" in both areas.

Hardy said that Florida's reforms expand the use of advanced directives to include not only terminally ill patients but also those diagnosed with what doctors call an "end-stage condition" (where a person's health is so deteriorated that further treatment is ineffective). The law also applies to coma patients who have no cognitive functions.

The changes helped clear up some of the confusion concerning patient's rights, Hardy says. A person enduring an end-stage condition may decide against life-prolonging treatment knowing that it only delays the inevitable. But when they slip into unconsciousness their adult children often find they can't bring themselves to stop doing everything they can to keep mom alive.

"We hate to talk about death," said Hardy. "We don't want to face it for ourselves and we don't want to face it for the people we love. This is what advanced directives are all about," she explained becoming more animated. "It's what patients want. And it's their right," she said, emphatically.

A plan for death

Not everyone shares Hardy's view about advance directives. Chronic pain can be like a parasite slowly consuming one's spirit. People in constant pain suffer insomnia, anxiety and depression. A loss of self-esteem and an inability to think straight are common symptoms. A key question the Pepper panelists faced was whether a person living in such pain is under such duress that they aren't fully aware of what they're doing when they sign an advance directive.

Jim Towey, who represented Aging with Dignity on the panel and is now the director of the White House Office of Faith-Based and Community Initiatives, fought to prevent advanced directives from being applicable in all cases.

"I support the decision someone makes to withdraw a feeding tube," Towey told Research in Review. "But . . . I argued (that we need) to slow it down and have protections put in place. There needs to be some threshold up front."

The panel ultimately determined that this threshold, now part of Florida law, is when there is no reasonable medical probability that a patient will recover as determined by the attending physician.

But before crossing that threshold, Hardy said the law requires a person must be of sound mind when preparing an advance directive. The panel's goal and the Legislature's intent was to encourage people to think about care decisions when they are healthy—mentally and physically—to discuss their thoughts with the people they love and trust, and to prepare a document that explains in no uncertain terms how they want decisions to be made.

In cases where a patient has lost consciousness, left no written instructions, and has no known relatives then Florida laws requires that a court-appointed guardian, the attending physician and the hospital's ethics committee must all agree to end care.

"That is a reasonable approach to the 'unbefriended' problem, especially for Florida," said Eakes. "The nature of a retirement population is to have a proportion of single elderly people who have outlived all their friends and don't have any relatives."

The final step in guaranteeing patients with the right to direct their care was to have the Florida Department of Health select a specific format for advance directives and make them applicable in all health-care settings. Before 1998, nursing homes, hospitals and other facilities commonly had different forms and paramedics often ignored them, unsure they were being shown a legal document.

That doubt ended with a state-sanctioned advanced directive form and a palm-sized do-not-resuscitate order created by the Department of Health.

"Some people are so adamant about this," said Hardy. "They laminate it and wear it on a chain around their neck. Then if they have a heart attack, lose consciousness and the EMTs come, it's right there on their chest. And there is no doubt what their wishes are."

Upon checking into a Florida medical facility today, a person must be asked whether they have an advance directive. If they don't they must be given a chance to sign one. This forces patients to consider if they want to spend their final days on a respirator and being fed through a tube when there is no medical probability that they would recover.

"Unless there is clear evidence that a person does not want to be on a respirator the tendency is to do more and not less," said Brooks. "All it takes is one multi-million-dollar lawsuit to ruin (a physician's) career."

Now associate dean of the FSU College of Medicine, Brooks said that modern medicine's remarkable ability to keep people alive inevitably brings up a quality-of-life issue, which puts a fine point on all end-of-life care.

"We have the technology to keep many people alive in the sense that their heart is beating but whether they really are having the quality of life that they would want is the question," explained Brooks.

The politics of pain

Of all the issues the Pepper panel faced, none was more difficult to sort through than the phenomenon of pain—both how to evaluate it and how to control it.

Surprisingly, many physicians are not trained to give comfort to patients as their pain becomes more severe and persistent.

"You would think that this is a basic," said Eakes. "But pain is frequently discounted. It's part of the basic condition (of dying). Studies show pain is seriously under reported."

A 1998 survey by the American Medical Association found that only four of 126 American medical schools required that students take even one course on care of the dying. And The Journal of the American Medical Association in 2000 published a harsh assessment of 50 leading medical textbooks, saying that most ignored the subject.

Brooks suggests one reason for this is that in the last century the practice of medicine changed. Its focus went from taking care of people to curing diseases. And although pain may be a constant companion for a terminal patient, a dying person can't be cured.

"Thirty years ago, a medical textbook would have said morphine is evil and it's okay for someone to be in pain," said Kathy Barnett, a pain management specialist at Tallahassee Memorial Hospital. "But there's a new set of facts (today)."

This is a gray area that many advocates of end-of-life care—a place where two well-intentioned acts meet in a head-on collision that results in people suffering needlessly. Most observers agree that patients have a right to pain relief and also that the state has a duty to protect elderly, sick people from being abused with drugs.

"Anybody can knock you up with enough morphine that you're unconscious until you die," said Jack Gordon, a Pepper panelist. A former Florida legislator from Miami, Gordon is now president of Hospice Foundation of America in Washington, D.C.. "That is not pain management. That is not conducive to human activity."

The target of providing comfort to dying people and protection from drug violations against their physicians is so difficult that last year federal drug enforcers finally met with the leadership of American medicine and hammered out a peace pact of sorts. The U.S. Drug Enforcement Administration and 21 health-care organizations, including the American Medical Association, signed a consensus statement recognizing the need for pain management and the danger of drug abuse. The agreement was intended to assure doctors that they would not be subjected to regulatory scrutiny, disciplinary action or criminal prosecution in the act of using controlled narcotics to relieve their patients' pain.

But hospice advocates and medical workers say the agreement did little to allay the fears of many doctors and medical centers. A New York state study and a Journal of Clinical Oncology survey indicates that physicians are still cautious when prescribing drugs such as morphine.

"The DEA can walk into your office and create havoc," said Eakes.

The conundrum is common in Florida, where drug interdiction efforts have been part of the landscape for three decades. But it still frustrates FSU's Hardy.

"Will you look at these figures?" she said, pointing to a 2000 study by Brown University's Center for Gerontology. The report showed that 45 percent of Florida nursing home residents complained of pain, with nearly 35 percent of those describing their pain as persistent and severe. As it stands now, if you are an elderly Floridian living in even a top-notch nursing facility you can have almost a 50-50 chance of being in constant pain, said Hardy.

"These people are dying and suffering and we're worried about abuse?" she asked. "This is a complete misunderstanding of what is drug abuse."

Two of the reforms initiated by the panel may already be helping to alleviate this problem—ordering doctors to talk to their patients about pain and making pain the fifth vital sign to be recorded on a chart at regular intervals.

"Putting it into law adds a new level of commitment by the state," said Brooks. "Towards that end it is clear in state law that relief should be offered and it gives protection to the physician."

Both Brooks and Hardy say they believe a law forcing discussions about pain is essential if a person's right to self-determination is going to be respected.

Talking about Death

On Death and Dying, released in 1969, made Elisabeth Kubler-Ross famous and death an acceptable subject for discussion between patients and doctors. In the years since, the idea has taken hold that patients had a right to know everything their doctor knew and to determine how to treat their illness. But it's difficult to change routines and beliefs that have existed for generations.

"What needs to be done now," said Malley. "Is educating the public and health-care providers. It takes more than laws to make reforms work. It takes time to inform the public."

Malley estimates that less than 25 percent of Floridians have a written advance directive. And Barnett and Eakes point to studies and anecdotal examples that doctors worry about being hauled before a judge if an autopsy of a patient shows large amounts of a controlled drug in their blood at the time of death.

"Media exposure is very powerful," said Barnett. "When a doctor gets investigated and taken to court even though the practice is above board. Well, that drives practices more than any law the Legislature can enact."

Still, despite this persistent knowledge gap among the public, health-care providers and law enforcement, Brooks sees a change ahead for the next generation of physicians. FSU's new med school has installed a curriculum that incorporates the principles of pain management and a patient's right to self-determination. Brooks said the school is determined to improve doctors' bedside manners and to teach them how to listen and talk to their patients. A novel approach to this is using video cameras to record interaction between student doctors and patients, he said.

Hardy sees an opportunity for the new medical school, FSU's nursing school and the university's School of Social Work to join hands on end-of-life issues. As the medical school grows, both Hardy and Brooks anticipate working together again on issues facing the elderly and end-of-life care.

"People tend to feel powerless when dealing with health care," said Hardy. "

"The role of the social sciences in this is communication. It's essential if we're going to respect people's (last) wishes."