Pain control at the end of life

Medical experts say nearly three of every four people who are facing death experience moderate to severe pain, and that more than half die in pain. Too often, the pain could have been eased – but wasn’t, they say.

According to surveys, people have an acute fear of dying in pain. A 1997 report of the US Institute of Medicine, for example, found that the no. 1 fear of people who were dying was the likelihood of being in excruciating pain towards the end of life. And last year, a National Institute of Health study of terminally-ill patients and their caregivers found that patients in pain were more likely to consider euthanasia.

"If end-of-life pain was better controlled, we could put Jack Kevorkian out of business," said Dr. Ira Byock, director of the Practical Ethics Center at the University of Montana in Missoula. "There’s a great deal of knowledge out there. The major gap is in applying what we know."

Medicine has, in fact, made tremendous strides in the last decade in understanding and identifying pain. Sophisticated and safe treatments are available to effectively control pain in 95 percent of patients, experts say. Yet each year, thousands suffer needlessly.

Pain As Fifth Vital Sign

Among the obstacles to patients receiving adequate pain relief are a lack of medical training in pain management, the stigma attached to narcotics and institutional roadblocks from academic and health agencies. Progress in overcoming these stumbling blocks has been slow.

That may soon change, however, because improving pain management, has become an increasingly recognized medical priority. For instance, new practice guidelines require that pain be treated as a fifth vital sign, like temperature, heart rate, blood pressure and respiratory rate.

And in a landmark California case last June, an Alameda County jury ruled that a physician was guilty of elder abuse because he failed to prescribe strong enough medication to an 85-year-old man dying of lung cancer. In the wake of this judgment, a bill was introduced in the California Legislature that would make pain management classes mandatory for physicians and require the California Medical Association to discipline doctors who fail to treat pain properly.

But it’s not just the matter of making patients feel more comfortable. Physicians now recognize that poor pain management may even hasten someone’s death. Patients in pain tend to form blood clots, making them more vulnerable to heart attacks and strokes, and the release of stress hormones in reaction to acute pain weakens the immune system, which compromises one’s ability to fight disease.

Complex Cases Of Pain

Yet "significant barriers" to delivering effective treatment persist, said Dr. Russel Portenoy, chairman of the Department of Pain Medicine and Palliative Care at Beth Israel Medical Center in New York. "Chief among them is the fact that many very good physicians don’t have the knowledge or skills to manage complex cases of pain."

A 1998 survey by the American Medical Association (AMA) found that only four of 126 US medical schools required students to take even one course on the care of the dying, while the 50 leading medical textbooks made scant mention of the subject. Since then, the AMA developed the EPEC Project (Education for Physicians on End-of-Life Care), a program to teach doctors the basis on appropriate care for dying patients. Today, in many states, pain management and end-of-life care have been added to the required curriculum for medical students.

It will take awhile, though, before the new skills become standard practice. In the meantime, many doctors still tend to under-prescribe potent narcotics, in part because they don’t want to be scrutinized by the Dangerous Drugs Board. To discourage abuse of potent narcotics, doctors must wade through a pile of extra paperwork to prescribe opiate painkillers. In the Philippines, for example, physicians are required to fill out special triplicate prescription forms to dispense controlled substances. These are drugs like morphine that is approved for medical use but has the highest potential for abuse. Consequently, many physicians sidestep the paperwork hassles by substituting less potent drugs that do not require a triplicate form. Other physicians worry that giving too much medication could actually cause a patient’s death. "There are many doctors who don’t have a grasp on the use of sedation in the eminently dying," Portenoy complained. "They don’t know the fine line between giving enough to make a patient comfortable without cutting off their respiration."

Time is a factor, too. Busy physicians often have only 10 to 15 minutes to spend with a patient. As a result, palliative prescriptions may be neglected. "Good pain management is time consuming and requires coordinated care among doctors, nurses and other health care professionals," said Dr. Henry Lu, pain management specialist of the Makati Medical Center. "There is no quick fix."

Patient’s Responsibility

Patients also have to take responsibility for ensuring that they get pain relief. Doctors say patients sometimes fail to mention their pain to doctors, perhaps believing that they must live with it.

"Studies indicate patients don’t want to talk about their pain in the time they have with their doctors because they don’t want to look or act like bad patients and antagonize their physicians," said Dr. Kathleen Foley, a neurologist at Memorial Sloan-Kettering Cancer Center in New York. Some patients may be afraid to report increased pain because they don’t want to face the implications: of cancer that may have recurred or spread, or of a medical condition that has taken a scary turn for the worse.

Some patients fear the use of narcotic drugs, such as opiates, because they associate them with junkies desperate for a fix and other troublesome images. They worry they’ll become addicted or develop a tolerance that will render the medications ineffective when they really need them. "Even if they’re dying, people don’t want to be thought of as addicts or lost in a mental cloud, which robs them of who they are," Foley said. "The elderly especially assume that being in pain is an inevitable part of the aging process."

Modern Pain Management

The reality, however, is that patients don’t have to suffer. Patients can take narcotics for a long time without becoming addicted or having the drugs lose their effective-ness. "There is no ceiling for opiates," Foley said. "You can continually up the doses, and they will still be potent." Side effects such as constipation, loss of mental acuity and drowsiness or nausea, can be minimized either by taking other medications or introducing the drug slowly to give the body time to adjust.

Doctors also now have an extensive pain management arsenal that can control even the most severe cancer pain. Depending on the location of the pain, they can also use different methods of dispensing the medications to ensure they go where they can do the most good – and get there quickly.

With the right medication, the terminally-ill can die comfortably. And yes, they can die in dignity – with their pain under control.