By Larry Beresford and Diane E. Meier, MD
A full-day workshop in Washington, DC, on November 29th delved deeply into the challenge of safely managing the pain of people with serious illness in the midst of an opioid overdose epidemic, highlighting the ways that responses to the public health crisis impact palliative care providers’ ability to relieve patient suffering.
The workshop was convened by the National Academies of Sciences, Engineering and Medicine (NASEM) and its Roundtable on Quality Care for People with Serious Illnesses. Participants discussed the Centers for Disease Control and Prevention’s 2016 “Guideline for Prescribing Opioids for Chronic Pain,” one of several guidelines and policies aimed at stopping the inappropriate use of opioids. While exceptions are written into the policies for patients with serious illnesses and/or receiving care from hospice or palliative care providers, these exceptions have done little to allay prescribers’ and pharmacist fears of legal culpability, and do not change new, systemic barriers to opioid prescribing.
National Overdoses and Unintended Consequences for the Seriously Ill
NASEM’s roundtable took place in the context of the CDC’s latest tally of drug overdose deaths in the United States, which rose to 70,237 in 2016. This was a 9.6% increase from the prior year, despite a continued drumbeat about the dangers of opioid use and misuse. Much of this increase in overdose deaths involved synthetic opioids such as fentanyl, which were manufactured for non-medical purposes, but the consequences of medical prescribing as a gateway were also highlighted in the report. The CDC recently attracted additional headlines with its announcement that life expectancy in the United States dropped for the third consecutive year, principally due to the impact of overdose deaths and rising suicide rates.
Policies have been put in place adversely impacting the ability of seriously ill patients to access appropriate pain treatments.
“We know there’s a crisis of opioid use disorder,” participant Amy Berman, RN, LHD, FAAN, Senior Program Officer with The John A. Hartford Foundation, told CAPC in a phone interview after the conference.” One of the unintended consequences of this crisis is that policies have been put in place adversely impacting the ability of seriously ill patients to access appropriate pain treatments. The problem is the blunt tools being used to combat this epidemic,” Berman said.
Speakers also highlighted the need for more communication and cross-training between often-siloed medical fields, including behavioral health, pain management, palliative care, primary care, and disease-specific specialties. Per Ms. Berman, “The great thing about this roundtable was how it brought together experts from different areas, including payers. CMS was in the room.”
The Importance of Differentiating Chronic Conditions
Jessica Merlin, MD, PhD, MBA, visiting associate professor of medicine at the University of Pittsburgh, encouraged attendees to understand chronic pain and substance use disorder as distinct chronic diseases in their own right. “If the patient has an opioid use disorder, that is a disease which also needs to be treated, and making the diagnosis is the first step toward treating it.”
It is important to avoid stigmatizing language, Dr. Merlin added. Terms like “legitimate pain” or “organic pain”—indicating that there is clinical evidence of pain such as X-rays—are not helpful. Their subtext is judgment on who deserves to receive opioid analgesics or not.
The humiliation and stigma compounds the distress of living with a serious chronic illness.
One of the many chronic pain patients who spoke during the workshop described being screamed at by a pharmacist when trying to fill her long-term and stable opioid prescription for pain caused by long standing collagen vascular disease. He loudly, and in a crowded store, told her to leave his pharmacy, stating that he did not want the business to serve “people like you.” The humiliation and stigma compounds the distress of living with a serious chronic illness and further marginalizes and burdens people with legitimate need for analgesia.
What if a patient with a current or past substance use disorder also has serious illness-related pain?
“This is not a comfortable situation to be in as a clinician, where now I have to be a cop,” Dan Gorman, FNP-C, MSN, OCN, palliative care nurse practitioner at Dana-Farber Cancer Institute in Boston, said during a recorded interview with a real patient that was played during the workshop.
“We want to help the patient, and the last thing we want to do is cause harm. Those of us working in palliative care are not trained in addiction medicine.”
Moving Forward: Advocating For Our Patients and Their Treatment
In addition to the harm to people living with serious illness and corresponding pain—in terms of stigma and the resulting abandonment by both prescribers and pharmacists—the need for education for all clinicians on diagnosis and treatment of substance use disorder, concurrent with treatment of serious illness, was a major theme throughout the workshop. Another was disparities in access to appropriate opioid therapy, including lack of access to these drugs in poorer and/or non-white neighborhoods. Speakers highlighted the need to learn from addiction medicine specialists, a challenge because these services are inadequate in number and capacity. They also called for better data on the impact of suddenly halting patients’ access to long-term opioid prescriptions.
If opioids are a public health crisis, one speaker noted, why isn’t the opioid epidemic treated like other epidemics of communicable diseases, using established tools such as contact tracing and policies to engage on a community level? Speakers noted the need to better support addiction treatment programs and non-pharmacologic alternative pain therapies, including acupuncture and chiropractic adjustment. Very unfortunately for the population of patients living with serious illness pain, comprehensive multimodal pain treatment programs are closing or cutting back their services because they aren’t covered by health insurers.
“We need evidence to support alternative treatments for pain,” responded Trent Haywood, MD, JD, senior vice president and chief medical officer in the Office of Clinical Affairs for the Blue Cross Blue Shield Association. “The more evidence we have, the more we can accomplish. Some plans are showing leadership in these areas and we will disseminate their results.” And yet, as other speakers noted, it is not a feasible policy to do nothing in the face of a crisis while awaiting better data.
Providing Help for Substance Use Disorders
Medication-assisted treatment (MAT) for substance use disorders involves opioid treatment programs and medications approved for this purpose, such as methadone— dispensed daily in licensed specialty clinics—and buprenorphine. The latter can be provided in medical settings, but only by providers who have completed an eight-hour training and qualified for a waiver to prescribe and dispense it, which few have done. Providers are not allowed to prescribe methadone for substance use disorder, which Dr. Merlin called a fragmented approach that deserves reconsideration.
A Call for Stories: The Impact of Opioid Regulation
The American Medical Association (AMA) President-Elect Patrice Harris, MD, MA, who served on AMA’s Opioid Task Force starting in 2014, said that the AMA is collecting stories from front line providers.
One thing providers can do is to compile stories about the impact of well-intended opioid regulation and coverage determinations on their patients and then share them with the American Medical Association and others, including their state insurance boards.
Providers can compile and share stories about the impact of well-intended opioid regulation and coverage determinations on their patients.
Additionally, we encourage providers to review the AMA Opioid Task Force Helping Guide: Physicians’ Progress to End the Nation’s Opioid Epidemic.