According to project director, Mary Baluss, Esq., “There is a gap in the United States between what we know and what we apply [for end-of-life care]. This project is designed to use legal approaches to change that picture. Americans don’t know what good pain management and symptom control is. So they don’t demand better and their advocates are not used to amplifying their demands.” Despite advances that have improved care, many barriers remain, such as accessing hospice, receiving inadequate treatment for pain and other symptoms, and failing to have advance care plans (or failing to have them documented and heeded). Baluss’ work includes educating other lawyers about what patients should expect from the medical community, and what to do when those expectations are not met. “To let someone live or die in unnecessary pain is malpractice, just like any other violation of the standard of care. Failure to heed advanced directives is medical battery. We want to get the attention of risk managers—that will change practices,” Baluss said.
California has legislated a “Pain Patients Bill of Rights” that protects doctors from sanctions if they use aggressive but appropriately documented pain management. Yet even there many doctors simply do not treat pain adequately. Many other states also have protective laws or regulatory guidelines to protect doctors who use opioids to manage pain.
Yet if the medical system is to be accountable for failures in good end-of-life care and chronic pain management, these safeguards have to be effective. “Sure, we have to be concerned about drug diversion. But doctors who are treating legitimate pain patients in a responsible, but aggressive fashion, should not have to worry about losing their licenses or going to jail,” said Baluss. She is currently working with doctors whose licensure has been threatened as the result of perceived over-prescribing of opioid analgesics. Baluss said that these cases continue to come up. She described a physician in Redding, CA, who is standing trial for manslaughter because a patient to whom he had prescribed narcotics combined the drug with alcohol and died. In a similar case, a Florida doctor has been indicted for five counts of murder where patients with legitimate pain misused their medications and died.
“It is important to note that most of these doctors treat chronic pain patients, and there are few actions against doctors treating the terminally ill. But the chill from such cases has its own limiting effect. This year’s congressional Pain Relief Promotion Act will similarly cause doctors to self-limit pain management for the terminally ill,” Baluss noted.
Although it is not a perfect solution, Baluss noted that hospice is currently the best model available for interdisciplinary care of the dying. Medicare pays for most hospice stays, so how it approaches hospice admissions is critical. HFCA and its fiscal intermediaries have, Baluss believes, restrictively interpreted the Medicare Act to replace medical judgment about hospice eligibility with rigid lists of symptoms. These restrictions should be withdrawn.
Baluss plans to use the new website to debunk the myths surrounding pain medication and its use. For more information, contact: Mary Baluss, Bazelon Center for Mental Health Law, 1101 15th St., NW, Suite 1212, Washington, DC or mbaluss@bazelon.org
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