Preventing pain in the dying: our role in a sacred trust
By Harold C. Sox, FACP
Several months ago, I appealed for help in defeating the Lethal Drug Abuse Prevention Act. This bill would have seriously slowed our profession's progress in improving pain management for dying patients. Congress did not enact the bill. We succeeded because of an all-out, highly skillful effort by our Washington Office staff and because ACP-ASIM members wrote, called and visited key members of Congress. As a result, legislators backed away from the bill even before the administration sealed its fate by objecting to its inclusion in the spending bill.
We were among a coalition of some 57 health care-related organizations that opposed the bill. When so many organizations all say that a bill will harm patients, its advocates have to have second thoughts. Indeed, some co-sponsors of the bill withdrew their support.
We could view this experience as a disheartening brush with the cynical side of politics. Ideology inspired this bill, and its chief sponsors didn't seem to understand our concerns about the harm it might cause. But we could also see its defeat as an uplifting civics lesson: Many legislators changed their minds when they realized that the bill could put their constituents at risk.
Sen. Don Nickles (R-Okla.), the Senate sponsor of the bill, has promised to revive the bill. If so, we will be ready. Meanwhile, we should take this opportunity to rededicate ourselves to eradicating the despair that patients feel when they confront serious pain.
Patients with chronic disease, especially a disease that ends in death, used to die at a younger age and more quickly of infection, an arrhythmia or simply rapid disease progression. Now, most live longer, to the point where pain, dyspnea or other symptoms eventually dominate their lives.
A research project called SUPPORT catalyzed the upsurge of interest in palliative care. SUPPORT was a randomized trial of a complex intervention to establish goals for the care of seriously ill patients so that they would not die on ventilators or undergo futile resuscitation efforts because of a lack of forethought. The study's most influential finding was the high prevalence of severe pain in dying patients, which is, unfortunately, an indictment of our treatment of pain at life's end.
An episode of severe pain can be a shattering experience that leaves the patient diminished and ever-fearful of a recurrence. We can prevent recurrent pain. And patients, especially the dying, want to hear us say that we will prevent them from suffering. To do so, we must be skillful in the pharmacological management of pain, and we must be part of a safety net that ensures that the patient remains comfortable.
This column is hardly the venue for a treatise on the pharmacological management of severe pain, largely because details do matter. Nonetheless, there are a few important general principles that can help physicians manage pain. First, mild pain often responds to a non-narcotic analgesic and adjunctive treatment, such as physical medicine and massage. Second, severe pain requires strong measures, and we must not shrink from using narcotics in whatever dose is required to provide comfort. Third, we should not prescribe meperidine for chronic pain; it is short-acting, and its metabolites cause delirium. Finally, the severity of the side effects of narcotics is generally not proportional to the dose, and respiratory depression seldom occurs when a dose is increased.
Severe pain has psychological consequences, in part because patients are worried about what it implies about their future. They often need counseling to help them adjust to new expectations. Finally, preventing recurrent pain reduces suffering, improves function, and lowers aggregate drug doses.
Failure to protect dying patients from the ravages of pain is a serious lapse of care. Any physician who has had renal colic or has given birth has had a glimpse of the experience of patients who suffer from illnesses that cause progressive pain. Severe pain can overwhelm patients to the point where they cannot envision a life without pain. Once they obtain relief from the pain, the fear of a recurrence can rule their life. They should be able to rely on their physician to keep them comfortable, a trust that we should regard as a sacred obligation.
Caring for dying patients who have pain requires a team effort to avoid interrupting pain control efforts. The care team must provide continuity of purpose and content of care over time, no matter where the patient is living: hospital, home, nursing home or hospice. A breakdown in communication as patients move between these sites could leave patients without any defense against the pain they fear.
Analgesic drugs in the doses needed for dying patients are expensive. Methadone and rapid-acting morphine, both oral medications, are the least expensive. Long-acting oral narcotics are quite expensive. Intravenous long-acting narcotics are the most costly, in part because of the cost of intravenous pumps to administer the drug. Medicare does not pay for these medications unless the patient is in the hospital or in hospice.
Our experience with the Lethal Drug Abuse Prevention Act is a reminder that the government's reach can extend into the office and even to the bedside. We succeeded against long odds because we spoke for our patients and defended their right to good care. Ironically, this legislation may have helped to awaken and reinforce our feelings about caring for the dying. They depend on us and yet, in their state of grace, they give us strength.
Dr. Sox speaks at pain management forum
The federal government needs to help remove barriers to appropriate pain management so physicians can do a better job of relieving pain, College President Harold C. Sox, FACP, said during a forum last month sponsored by Sen. Ron Wyden (D-Ore.).
Specifically, Dr. Sox said, the government should increase research, better educate and train health professionals, develop quality indicators to measure pain treatment, provide public education and reduce regulations, particularly those that relate to the use of opioids.
Other forum panelists, including representatives from the American Cancer Society, the Federation of State Medical Boards and the Veterans Administration Health System, voiced a similar message, calling for increased research and outreach efforts.
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