Legal and ethical concerns persist about providing adequate doses of opioids for pain and other symptom relief. Myths about the potential to create addicts among terminally ill patients or about the risk of hastening or causing death with overdoses of opioids are hard to overcome.
Doctors who practice state-of-the-art pain management, including prescribing relatively large doses of opioids for dying patients, too often feel threatened by investigation, trial, loss of license, and even criminal penalties if state medical examiners boards or the Drug Enforcement Administration (DEA) claim inappropriate or excessive use and prescription of opioids. Prescribing laws that require strict tracking and reporting of controlled substance use compound these problems.
In fact, research shows that the incidence of addiction in cancer patients treated with opioids is extremely small. Although physical dependency occurs with opioid treatment, it does not lead to any adverse behaviors.
Drugs such as morphine and other opioids used in pain relief are often thought to hasten death, despite a lack of evidence to support that assumption. Because of this fear, some doctors are concerned that use of effective drugs will be seen as having engaged in active euthanasia (i.e., actively killing a patient via lethal injection). (More on this topic is found in chapters 3 and 4.)
Since 1998, Congress has been considering legislation that would have allowed the DEA to determine whether high doses of controlled substances had been used with the intent to hasten death, rather than just an intent to relieve pain. Adding such a threat to physician practice would have hindered effective pain management even further.
The discussion of this proposed law indicated shortcomings in what many policymakers know about pain management and relief: Like many people, they misunderstood the role of opioid analgesics in pain relief. In 1999, new legislation designed to focus on improving pain management was introduced, along with legislation to promote more research into end-of-life issues, increased public access to information, and greater federal attention to the issue.
Legislative efforts are few and have largely focused on pain, ignoring other symptoms that cause the dying to suffer needlessly. Although pain is often cited in surveys about fears of dying, other symptoms can also be quite distressing. Many people may suffer from other symptoms, such as dyspnea, weakness and fatigue, nausea, mouth and skin problems, and depression and anxiety, for long periods during the course of their illness. These symptoms can go on for months or years, not only in the final days or weeks of life. Like pain, these symptoms may be ignored, and they have not been subject to legislative or policy efforts at improving care. And, like pain, many of these symptoms can be relieved, especially if health care providers understand how common - and treatable - they are.
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This online version of the book Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians is provided with permission of Americans for Better Care of the Dying [ www.abcd-caring.org ] and Oxford University Press. All rights reserved.
For further information on quality improvement in end-of-life care visit The Palliative Care Policy Center [ www.medicaring.org ].